Clinical Bioethics Blog : Bioethicist : Bernard W. Freedman : Medical Consulting, Ethics, End of Life Decisions

Medical records:

Waiting for medical records “after discharge” is of no help. 

Reviewing medical records while an inpatient in the hospital allows the patient and/or a surrogate decision maker to obtain the greatest amount of information possible over a cross section of medical specialties providing care.  It can also provide a clear picture of the condition of the patient with respect to cognition, pain and agitation. Review of reports of CT scans, x-rays, and MRI’s can bring a clear picture of improvement and deterioration in the patient’s condition. All of this will enhance consent based upon complete information and make it easier for patients and surrogates to arrive at decisions based upon medical information rather than confusion, fear and guilt.

Yet, almost universally, medical records are withheld from patients, their surrogate decision makers, independent bioethicists, and attorneys until well after the patient is discharged from the hospital. In cases of critical care and end of life this is especially problematic because decisions that will result in the determination of withholding or withdrawing life sustaining treatment forces decisions to be predicated upon a brief summary of care and prognosis provided by one of the physicians caring for the patient.

The patients and their decision makers are entitled to receive all material information required to make an intelligent and informed decision. As the risks of decisions increase the necessity for an increased amount of information must follow.

Today’s patients and decision makers are in a different position than patients 30 or 40 years ago. Their ability to obtain information rapidly using internet searches provide a plethora of information.  Additionally, most medical centers are in the process of transitioning to electronic health records. This will ease administrative problems in getting copies of reports by consultants, radiology, labs, etc to decision makers. Medical centers have the ability to establish a “portal” to physicians but bar access to patients and decision makers.

Accordingly, legislation mandating the release of medical records to patients and surrogate decision makers, in the hospital on a timely basis, must be promulgated with real penalties for failing to do so.

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“Be a good girl and take your medicine.” Part 1

This statement was made to a 60 year old end stage leukemia patient who demanded to be discharged from the hospital. The patient refused the prescribed medications.  No attempt was made to discuss the risks attendant in not taking the prescribed medication. The patient was cogent and articulate - able to make medical decisions for herself. The physician walked out of the patient’s room in the ICU. No social worker, bioethicist had been called to assist. Patient Jane was merely told, “Be a good girl and take your medicine.”

What can we say about the physician who made this statement? One might speculate that perhaps the physician was elderly – old school, etc. He was not. Early forties, well trained, and well respected. Could it be a socioeconomic impasse in communication? Possibly, the pt was poor and black. There was family or friends to advocate on her behalf. Nevertheless the statement breached medical ethics and legal responsibilities. A patient has a fundamental right to determine what medical care she will accept. To ignore these requests constitutes battery and possibly false imprisonment. 

The patient reported that she never really spoke with her doctor. He would come into the room briefly, she said, early in the morning. He spent a short time examining her. Often he was interrupted by cell phone calls. He would say he had to run. The pt reported that the nurses were giving her little attention, save saying that she should take the medicine the doctor proscribed. She told the ICU nurses she was refusing meds and wanted to be discharged. She called me.

I found her curled up in a fetal position shivering with no blanket calling for help. She told me her wishes; her refusal of meds and request to be discharged. She had voluntarily admitted herself to the hospital and saw no reason that she should be kept “like a prisoner” and with her “Constitutional Rights violated." She implored me to help her; she said she had a brief time to live and did not want to remain in this hospital to wait out her days. She was feeling better and "wanted out." I contacted the primary treating physician who said she was not competent to make decisions. I recommended a psychiatric consult to confront this issue. The psychiatrist responded within a few hours and found that Jane was clearly competent to make decisions for herself, but placed her on an involuntary 72 hour hold because he found her to be paranoid that people would not listen to her.

This was a misapplication of the purpose of the 72-hour psychiatric hold statute, used for the protection of a who may cause harm to herself or others. I contacted then psychiatrist to inquire why he felt she might cause harm to herself or others. He did not think she would but did not want to cause "a problem" for the primary treating physician.

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The 9^th Circuit Court of Appeals recently heard oral argument in the case of NATURAL RESOURCES DEFENSE COUNCIL,( NRDC), vs. ENVIRONMENTAL PROTECTION AGENCY, Case# 12-70268, regarding the EPA’s conditional approval of a nano-silver product made by a Swiss company HeiQ Materials. The Amicus briefs describe it as: 

“ the EPA’s unprecedented decision to conditionally register the nano-silver pesticide products HeiQ AGS-20 …as unsupported by substantial evidence. EPA has failed to show that the conditional registration will not cause any unreasonable adverse effect” on human health and the environment. The limited studies to this point have raised significant red flags about nano-silver.”

The Product is HeiQ AGS-20, as described by its manufacturer, provides antimicrobial protection for textiles (e.g. blankets) and medical products … (wound dressings, implants) with unique durability and effectiveness… contribute to healing, increased safety and faster recovery. 

The issue in this case is the legality of the EPA’s interpretation that the interest of the public and of business trumps the EPA’s administrative mandate to first determine the safety of pesticides and to affirmatively determine that a product does not have  “unreasonable adverse effects.” In this case infants and children under 2 have not been studied regarding fabrics containing nano-silver if chewed  by infants or children 1 or 2 years of age. The fear is an increased risk of injury or death.   Although the EPA is required to evaluate risk, they did not do so in the group most likely to ingest nano-silver - infants and children 1 to 2 years old who chew on materials available to them.

During oral argument in the Court of Appeal, one Justice questioned counsel for the NRDC as to whether we should do away with stairs because babies fall down the stairs all the time - isn’t there a risk in everything that we do?

This joking cynicism fails to appreciate the unknown risks of nanotechnology and perhaps parallels the ignorance of the majority of the public as to dangers of working with substances of unknown nature. According to an amicus brief filed on behalf of various organizations, both private industry and governments are spending billions of dollars on research and development of nano technology. Nano-silver is the largest area with the greatest amount of new products at the present time. To date, however, no labeling with respect to unknown risks is required.

The EPA regulates nano-silver products, as pesticides because the intended purpose is antibacterial and antimicrobial. The risks involve potential toxicity from individual one time exposure to dose related effects from the aggregate expose to numerous products such as, sunscreens, food packaging, children’s toys and pacifiers, laundry detergent, personal hygiene products, jeweler, bedding and furniture, underwear, hair brushes, creams, lotions, pillows, and toothbrushes.

Nano materials can be absorbed into the brain (able to get across the blood brain barrier), liver, heart, kidney, spleen, bone marrow as well as the nervous system.

It is the EPA’s job, its burden of proof, to determine before registering a pesticide, that it will not cause any “unreasonable adverse effects” on human health and the environment. That is the EPA’s affirmative duty and thus cannot be delegated to the manufacturer or anyone else. The EPA has in this instance chosen to give a conditional approval permitting the manufacturer to market it for 4 years – and then see what happens.

The justification for giving HeiQ conditional approval, as stated by the EPA: “the Agency has considered the nature and its pattern of use, application methods and rates, and level and extent of potential exposure. Based on these reviews, the Agency was able to make basic health and safety determinations which show that use of HeiQ AGS-20 during the period of conditional registration will not cause any unreasonable adverse effect on the environment, and that use of the pesticide is, in the public interest. “     

Whether this is a sufficient predicate to conditionally approve the product, or whether the EPA is shirking its duty under its administrative mandate, should be at the core of the Court of Appeals’ decision. The statute requires that “ The Agency will approve an application only if:… The Agency has determined that the product will perform its intended function without unreasonable adverse effects …"

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 Hassan Rasouli, previously diagnosed as being in a permanent vegetative state, has now been diagnosed to be in a minimally conscious state. The reason for the change - his physicians noted that he is able to give a thumbs-up when asked by his wife and able to track with his eyes. His physicians are Drs. Brian Cuthbertson and Gordon Rubenfeld, two critical care specialists at Sunnybrook Health Science Center in Toronto Canada, one of the largest trauma centers in Canada, who have petitioned the Canadian Supreme Court for the authority to withholding life sustaining treatment without the consent or approval of the patient’s wife and family and without the review and consent by the Canadian Consent and Capacity Board – as the law requires of them.

We now know that his doctors, who where adamant about terminally extubating him without the consent of the family, were wrong in their assessment that his was in a vegetative state was permanent, (assuming that it was a vegetative state to begin with). Not only did they want to extubate him without the consent of his wife and family, they also wanted to do so without review by an ethics committee, or Consent and Capacity Act of Canada that the law required of them, nor, most curiously, would they provide the Court with a copy of the Mr. Rasouli’s medical records. The doctors argue that no consent is needed because ending someone's life is "not treatment." In short, they wanted to proceed without any questions, oversight or ethically required transparency.

When questioned about this originally, Drs. Cuthbertson and Rubenfeld posited that if they were wrong, they would bear the responsibilities and consequences of their unilateral decision. This was a fatuous statement because if Rasouli was terminally extubated, there would be no evidence or basis to question their decision and thus impossible for them to be held responsible for anything.

In bringing this case to the Canadian Supreme Court they wish to set a precedent that any physician may terminally extubate without consent of the surrogate decision makers nor be subjected to any questions, oversight or ethically required required transparency.

In the United States it has been made clear by the courts, that the critical distinguishing factor between terminal extubation and physician assisted suicide or euthanasia is the patient’s clearly established rejection of artificial life sustaining treatment. Therefore, unambiguous documentation must make this clear. Only by being forthright about these factors can real transparency reflecting respect and dignity for the patient’s life truly exist. 

 In France, at the Centre Hospitalier Universitaire, Henri Mondor,  just outside Paris, they follow a standardized collective decision-making process, noting that “… terminal extubation, very common in the United States, but much less so in France, reinforces the transparency of end-of-life decisions in intensive care units.” They explain:

“This process included three stages. In the initial phase, withdrawal of ventilator support was discussed at a department staff meeting.

 The meeting's conclusions were transcribed into the medical file, and the possibility of extubation was raised with the family during a planned interview.

At least a 24-hour period of reflection was necessary before a new interview, and any opposition, hesitation or lack of understanding by the family at this first interview resulted in suspending the decision.” …

It is a fundamental right and requirement for a patient, to consent to terminal extubation, and only after all risks have been explained and all options presented. In the case of Hassan Rasouli his wife, as surrogate decision maker must consent,

It is this rejection of treatment that distinguishes respecting the patient’s decisions from assisting in a patient’s suicide.

Even in circumstances where consent has been given, physicians must be extremely reluctant and guarded to end a patient’s life, especially in cases where the patient is not suffering from a terminal disease. Surrogate decision makers often have an incentive, personally, emotionally and financially that may make their “consent” to the withdrawal of life sustaining treatment, suspect. 

Must consent to treat, as well as consent to withdraw treatment, be required?

None of this should be interpreted that Drs. Cuthbertson or Rubenfeld are acting in bad faith and do not have the interests of the patient as paramount. Whether or not that are mistaken in Mr. Rasouli's case does not mean that they will not be correct in the next hundred cases. The issue is whether on not consent is a prerequisite to ending someone's life. Stated otherwise, must consent to treat as well as consent to withdraw treatment required.

Wearing two hats is always dangerous - filled with conflict of interest. Drs. Brian Cuthbertson and Gordon Rubenfeld however, seem to want to wear two hats: deciding what the best medically and when it is best to end a patient’s life. Cuthbertson and Rubenfeld must have concluded that a patient’s personal beliefs – their personal life history and experiences, religious beliefs, and cultural customs should be subjugated to their personal beliefs. Yet, their expertise is as critical care physicians, not as oracles.  In areas other that critical care medicine they have no more ability than anyone else and should not hold sway over other peoples decisions.

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The New England Journal of Medicine recently published an article entitled: “ The Palliative Care Information Act in Real Life,” (NEJM 364;No.20 May 2011), regarding a New York statute that requires a physician to have discussions of end of life treatment options with the patient when the patient is “terminally ill.” Alan Astrow MD and Beth Popp, MD, the authors of the article, are troubled by the phrase terminal illness. They argue that the definition in the statute is vague and an improper interference with the physician-patient relationship. The fact that they find the phrase, “terminal illness” troublesome, is troublesome.

The authors fail to understand basic concepts in clinical bioethics as well as case law as to the duties of physicians dealing with critically ill patients and the provision of information on all relevant and alternative methods of treatment. Perhaps they think like so many others, that end of life care planning is reduced, basically, to one question: If you are close to death and your brain is in a persistent vegetative state do you want us to remove you from life support or not resuscitate you if you go into cardiac arrest? This is not the case. A variety of options are available to patients who are critically ill. It is foolhardy to wait until a patient is unable to actually explain their wishes to the physician and allow an adversarial situation to be created between family members, friends, physicians and other medical staff, as well as possibly leading to referring the matter to the ethics committee, the hospital administration, or hospital attorneys.

A variety of options should be addressed as early as possible and relative to the disease trajectory. In addition to discussing the anticipated medical course, differing degrees of brain injury or damage, the likelihood of recovery and anticipated risks and treatment options and related issues of quality of life. The following are some suggested talking points:

a.     The selection of one person who will act as surrogate decision-maker: the patient must understand that the surrogate decision maker only has any say if the patient cannot speak for herself. It should be made clear that the purpose of the surrogate is to effectuate the wishes the patient, not the wishes of the surrogate. Additionally it should be made clear that the surrogate does not have to be limited to a family member.

b.     A patient has the right to know (subject to the therapeutic exception) applicable Evidence-Based Medical (EBM) information to help the patient understand and evaluate risks and benefits of various treatment options (including lack of treatment) based on clinically significant research, such as: cohort studies, double-blind clinical research, meta-analysis, etc.

c.     Discussion with family and clergy should be encouraged;

d.     Advise that he or she may seek a second opinion. Aside from the fact that the patient may or may not want a second opinion, offering to arrange one will often provide a sense of confidence in the physicians treatment plan.

e.     At some point in time the patient may want to be transferred home on hospice and die peacefully with his or her family rather than in the ICU. Thus, palliative care needs to be explained and the probabilities presented to the patient with respect to longevity and quality of life.

f.      Does the patient have any religious requirements that they wish to follow with respect to receiving pain medication that may or may not hasten death? Many patients are willing to receive pain medication but not to the point where it may hasten death. Others may want to receive all necessary pain medication and sedation should be kept as pain free and comfortable as possible.

g.     Does the patient have religious convictions with respect to receiving blood or blood products?

And so on.

The rights of patients to make their own medical decisions create reciprocal duties on the part of their physicians to respect and uphold these rights.

The authors argue that there is a “standard of care” that dictates when physicians must tell their patients all relevant medical information. This is not true.

The standard is not determined by the medical community, but rather, by the patient him or her self. It is not a medical question; it is a personal, individual and unique decision by the patient, of which can only be made if all medical information and options or explained.

As one commentator advises physicians: “If you don’t speak early, you lose your voice.” Carol Taylor, RN, PhD advises patients: “For someone who sits with families trying to make these life and death decisions, I can say that planning is the greatest gift to your family.”

What is it that stands in the way of early discussion for many physicians?

The authors of the article, Drs, Astrow and Pope, claimed that:

 “… physicians need to feel comfortable communicating their values and experiences and providing non authoritarian guidance and support while expressing interest in and respect for the experiences and values of patients and families.”

This statement is ignorant of the law, foolish and, moreover, it is surprising that the NEJM would publish this misguided advice.

Physicians do not have to feel comfortable. What difference does it make if the physician “feels comfortable” or not when carrying out his or her responsibilities. Many physicians, if not most, will never feel comfortable in such situations. What is important is that the patient is not “comfortable” and may be fearful, confused and in need of all necessary information. (Without the provision of all relevant information, there cannot be any informed consent and the physicians may be found civilly liable in addition to incurring state imposed fines).

Secondly, it is clearly inappropriate for a physician to convey his or her values to the patient. A physician’s values are of no moment whatsoever. It is, on the contrary, the patient's values alone that should guide decision. Indeed, physicians’ values should not even be discussed or mentioned. If so, the patient would receive different guidance dependent upon which physician’s door she walks through.

Thirdly, the physician is always in a position of authority.  The author’s suggestion that they can counsel a patient in a non-authoritarian manner will not work. That cannot be avoided. So, any suggestions, as to a physician’s values must be avoided. The values of the physician are not in issue.

The decisions of the patient should as John Stuart Mill once describe, be a product of  “…free, voluntary and undeceived consent and participation…”

The authors provide us with a scenario of an 85-year-old man with gastrointestinal cancer that had metastasized to the lung.

“… when his cancer and its spread were diagnosed two years ago,

 he was already frail.”

At this point, if not long before, the patient should have been given the opportunity to consider many of the types of questions listed above.

The patient may have benefited from the knowledge, for example, that in a recent study of the 151 patients with metastatic non-small cell carcinoma, early palliative care led to significant improvement in quality of life and mood and that patients receiving earlier palliative care and less aggressive care often had longer survival rate.” If this 85-year-old patient with metastatic lung cancer was not presented with these and like information from applicable and relevant and authoritative studies, then the patient lost the opportunity to have longer survival and improved quality of life.

Finally, Drs, Astrow and Pope are concerned with the interference of the state into the practice of medicine. I agree that interference of the state into the practice of medicine is something that must be vigorously challenged. In this situation, however, the statute refers to the necessity of ensuring the rights of patients rather than medical practice

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Rationing "scarce medical resources" and lying to the patient - do these go hand in hand?

7 comments

Claudia Ruiz M.D • I don't think so, I'm from Mexico, and I have worked plenty with the mayan communities, they really don't have any acces to medicines o medical attention. We did our best to get them what they need, but sometimes it is impossible. Anyways, I never lie to my patients, they deserve to know the truth always. Maybe it is a different situation in the United States and the HMOs, but in principle, I don't think it is ethical to lie and withhold information to people, specially if that information is for the best of the patient.

Henry Levenson,M.D. • No, rationing health care does not equal lying to patients. It is better to explain to the best of your ability why referrals were declined or not authorized. Patients seem to assume that physicians are responsible for the reasons why health care is rationed.

M. Sara Rosenthal • In the U.S., rationing is usually not done according to an ethical framework (such as beneficence); it is usually done according to "ability to pay": if we were transparent about THAT -- we wouldn't have opposition to universal healthcare in the U.S. by the very people who could benefit from it. Transparency about access is really the issue.

Bernard Freedman, JD, MPH • Follow up Comment: Rationing : Withholding Medical Care by Lying to the Patient 

"Rationing" of medical care and “triage” are different. 

Triage prioritizes the use of limited medical resources when sufficient resources are not available. 

Rationing is the withholding of available care for political/economic reasons. 
With respect to rationing, therefore, it must be decided whether or not the patient is going to be told the truth. 

The ethical question here is whether patients must be told that medical care is being withheld, or if a standard practice will sanction lying to their faces. 
In his book “Pricing Life” Dr. Peter Ubel provides us with his definition of rationing. He says that the clinician must, 
(1) Withhold, withdraw or fail to recommend a service that, in the clinician’s best judgment, is in the patient’s best medical interests; 
(2) Act primarily to promote the financial interest of someone other than the patient, including an organization, society at large, or the clinician himself or herself, and 
(3) Have control over the use of the medically beneficial service” (Pricing Life – why it is time for health care rationing, Peter A. Ubel, M.D., MIT Press, Cambridge Massachusetts 2000). 
The phrase “withhold, withdraw or fail to recommend” defines rationing as outright dishonesty with the patient – violative of the legally required fiduciary role in physician-patient relationships. 
So, I agree with Dr. Rosenthal that, indeed, transparency is the real issue

Marie Cartwright • Withholding, withdrawing or failing to recommend a service does not imply, in any way, dishonesty. It rather describes an informed attitude a physician will take towards a patient regarding a particular procedure and their candidacy for that procedure. A physician, for instance, can withhold a procedure from a patient while still being honest about the reasons for doing so, and rightly so. 

In the UK, for instance, candidates for hip replacement surgeries are (or were several years ago) denied the surgery until they brought their BMIs down to a healthy level. In other words, obese candidates were denied hip replacements based solely on their weight. I initially struggled with this particular topic because it seemed to have a tone of infinite regression- patients who required hip replacements would have a much easier time reaching a healthy weight if they had a healthy hip! However, if the supply is far less than the demand, we must also take into account that obese patients who received a hip replacement would also probably need another replacement sooner than those within a healthy weight range. 

In terms of honestly, however, the patient-doctor relationship cannot exist without trust. Lying should never be present, under any circumstances.

Bernard Freedman, JD, MPH • Thanks for the discussion. This is a growing quandary that calls for clarity from medical, ethical and public policy points of view. There is a difference between withholding or withdrawing efficacious treatment and telling a patient what you are doing and why, and “failing to recommend” an efficacious treatment and keeping it a secret under the guise of having what you call an “informed attitude.” So, I must ask, what is it that informs a physician’s attitude that justifies keeping the decision hidden? In other words lying to the person you have the highest duty to be honest with. Yet, you say in the next sentence of your comment that it is ok to” withhold the treatment while still being honest about the reasons for doing so.” I am unclear whether you are really saying that withholding the truth, lying, is acceptable. 
You give the example of the obese patient who needs a hip replacement but is denied the surgery unless he or she loses the weight. The denial may be justified, but is the patient told the reason for the denial? Do you tell your patient that they must lose weight before the hip replacement will be permitted? Of course, I believe, you do. Otherwise there would be no incentive for the patient to lose the weight. 
It is the trust aspect, the moral imperative of truth telling between physician and patient that is, I believe, at risk when rationing truly scarce resources.

Marie Cartwright • I think we are on the same page in many respects here. But, if I may clarify a possible misunderstanding- You said, "So, I must ask, what is it that informs a physician’s attitude that justifies keeping the decision hidden?" I definitely didn't intend to imply that physicians should keep their decisions, or reasons for their decisions, hidden. I believe quite the opposite. By informed attitude, I meant to refer to the physicians as "gatekeepers" who decide who can have what procedure, and when, and their decisions, or attitudes, are informed by factors solely about the patient. Physicians, after all, are the experts that we rely upon to help us better our health and in some circumstances, "save" us. In essence, and hopefully to answer your question, withholding a treatment and withholding the truth are two entirely different things. In my previous comment, I said that withholding a particular treatment is in no way dishonest. However, withholding a treatment without justifying or explaining it to the patient goes against the patient-doctor relationship and also is counter productive for any patient's treatment. 

Regarding the hip replacement patients, I believe the the denial must, in all situations, be explained to the patient. I don't really believe that truth telling is at risk in any situation, much less the rationing situation. A patient must be told why he/she is no longer a candidate for a particular procedure. Even when supply is scarce, to be dishonest serves no purpose.

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Rationing : Withholding Medical Care by Lying to the Patient

Rationing of medical care and “triage” are different.

Triage prioritizes the use of limited medical resources when resources are insufficient for immediate treatment. 

Rationing is the withholding of available care for political/economic reasons.

With respect to rationing, therefore, it must be decided whether or not the patient is going to be told the truth.

The requirement of informed consent cannot cease to exist because of political/economic policy. Nevertheless the degree of informed consent may vary with the degree and type of risk. Informed consent for a blood pressure medication may not require any specific discussion if the medications are reasonably the same in term of efficacy of treatment.

The physician has an affirmative duty to raise the question and answer such questions by describing all “available” treatment.

On the other end of the spectrum, withholding information about hemodialysis in a patient with multi-organ failure requires an explanation of all risks of treatment and non-treatment alike. Life expectancy, quality of life, prolongation of the process of dying and so on must be discussed in specific detail. Religious considerations may come into play as well. For example, some religious doctrines draw a line between “ordinary” and “extraordinary” care – ordinary care being required, where extraordinary care is not.

Nor can a physician simply wait to see if the patient inquires about other treatment that may be available. The physician has an affirmative duty to raise the question and answer such questions and breaking down “available” methods of treatment.

Part II will address policy considerations and legal ramifications of rationing medical care.

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The September 2010 publication of “The Hospitalist” reviews the overall survival rates for cardiac arrest patients.

This article reports that patients frequently have unrealistic expectations and overestimate their chances of survival. Patients predict post-arrest CPR survival at 64%, while the rate is 17%. Most important is that in nearly half of the patients who initially expressed the desire for CPR, once they were informed of the actual estimates, they changed their minds and code status was changed.

It is difficult for many hospitalists to discuss DNR orders with patients. There is not a trusting relationship formed over time. Therefore it is often difficult to broach the subject with patient's or their surrogate decision makers.

For an in-depth and legitimate conversation leading to an informed consent to take place there must be a serious and comprehensive discussion of the patient's history and resuscitation statistics to the degree that they are reliable and clinically significant. The article notes that the “presence of hepatic insufficiency, acute stroke, immunodeficiency, renal failure, or dialysis were associated with lower survival rates.” The authors also note that survival rates are lower with metastatic disease and other malignancies.

Age and a history from prior skilled nursing facilities were associated with poorer survival rates and racial statistics also play a part in survival rates. This article discusses a study that reviewed the medical records of 433,985 Medicare patients 65 years and older who underwent in-hospital CPR. Patients 85 and older had a 6% chance of surviving hospital discharge. This, however, is a statistic and cannot be provided to patients without a detailed discussion of their specific medical condition. Survival rates tend to be lower in patients who are black/nonwhite. Blacks and nonwhites are reported to use CPR at a higher rate but with lower survival rates.

Most importantly, any discussion must include a description of the probable quality of life with post arrest survival. The authors take note that in post resuscitation survivors, in 86% of patients with pre-arrest cognitive abilities remain the same on discharge.  Please note that a boilerplate prediction of survival will not pass legal muster.

A Cautionary Note: We should also be alert to the fact that some patients may tend to have a grimmer perspective of survival because of a diagnosis of a malignancy, albeit the cancer is in early stages and not immediately life-threatening. Fear of “cancer” does frighten patients to the point where they will opt for a DNR order prematurely when it may result in an unnecessary early death. Hospitalists, therefore, must include a detailed description of cancer staging, and in such instances take a wait and see position to allow the discussion to continue with the patient’s primary treating physician.

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It is an injustice to cause patients to unnecessarily prolong the process of dying. Actual futile care must be avoided. But it is equally an injustice to easily acquiesce to patient’s demands that my result in unnecessary death.

On August 17, 2010 the Supreme Court of Pennsylvania decided a case involving a non-terminal, profoundly mentally retarded patient. The patient was conscious and non-terminal. David is 53 years old. David's parents were the guardians.

His parents argued that putting him on the ventilator was not in his best interest and requested terminal extubation. The hospital refused. After several weeks his condition improved and he was successfully weaned from the vent.

David was diagnosed as having aspiration pneumonia and was put on a mechanical ventilator. His parents argued that putting him on the ventilator was not in his best interest and requested terminal extubation. David's physicians and hospital properly refused to follow these demands. After several weeks his condition improved and he was weaned from the ventilator.

Notwithstanding arguments that this case is moot, the court went ahead and rendered an opinion The Pennsylvania Supreme Court was asked to review the case to clarify the statutory scheme regarding the right of individuals to make their own decisions and to clarify the procedures for decision-making when a patient is incompetent.

The applicable statute required all things “… necessary to preserve life shall be provided to an individual who has neither an end-stage medical condition nor is permanently unconscious”

 An attorney was assigned to David who argued that a Guardian's decision-making abilities should be consistent with the medical recommendations where the life of an  incapacitated person is at stake.

What, we must ask, was the basis for the parent’s demands. What is it that was not in his best interest? It was not their fear that he would be forced to remain on the vent permanently which would cause him anxiety and confusion, because he was responding to treatment for his pneumonia and was weaned off the vent in a few weeks. He would, as presumably they were told, return to his normal base line. If this was the case, the reason for withdrawing the vent early would have been a decision to  to end his life (kill him) notwithstanding his improving condition.

The level of proof required to justify terminal extubation as being in the patient’s best interest is the legal standard of clear and convincing evidence.

The trial court determined that there was no clear and convincing evidence to justify terminal extubation. The hospital argued that life preserving medical care must be provided and, no consent from a third party is required. Nor must any objection by a guardian or surrogate decision maker be honored.

The Supreme Court of Pennsylvania made clear that there is a public policy to preserve life in circumstances of a non-terminal conscious patient.

Moreover, the court noted that in this instance David never had the ability to appoint a surrogate decision-maker in situations where he did not suffer from an end-stage condition or permanent unconsciousness and his parents were precluded from making a decision to end his life unless there was clear and convincing evidence that he was in end stage disease or permanently unconscious.

Even in the situation of a conscious cognitively able patient we must appreciate that a request to withhold life sustaining treatment in a patient with a non terminal condition,  still requires a showing of clear and convincing evidence that the patient has the capacity to make such a decision.

We should allow some time to pass, have a psychiatric consult; neurologic consult to evaluate any potential underlying injury or insult that might affect the decision-making capacity.

As a patient’s condition improves and the risk of death is diminished the greater the need for a more paternalistic plan of approach when the patient’s or surrogate's demand may result in unnecessary death.

Many patients with mental illness may have capacity to make medical decisions for themselves and many normal cognitively functioning patients may not have capacity. We should not refuse an autonomous decision by a patient, yet we cannot blindly accept a decision by a patient who could return to a reasonable quality of life if treated for a short time.

Physicians must be free to fully evaluate the patient without fear of liability for “refusing” the patient’s demands. As a patient’s condition improves and the risk of death is diminished the greater the need for a more paternalistic plan of approach when the patient’s demand may result in unnecessary death. In this instance the medical record should reflect that the physicians are not refusing the patient’s demands, but first, fully evaluating the patient’s condition before the demands can be accepted. Involvement of bioethics consults and ethics committees will help to protect both the patient from harm and physicians and hospital from claims of liability.

 

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The New Jersey Superior Court–Appellate Division dismissed the appeal in Betancourt v Trinitas finding the appeal moot. The court stressed it's concern over the  “sparse record” presented at the time of  the original hearing in the trial court as well as on appeal and found that the evidence was not “conclusive in several areas necessary to fully adjudicate the substantial issues raised.” This is sometimes referred to as insufficiency of evidence. If the person or entity bringing the case does not provide sufficient evidence the court will dismiss the claim. In this case Tinitas Hospital's request to withdraw the ventilator.

 Ruben Betancourt, 72 years old, was unconscious following the dislodging of a ventilator breathing tube after surgery at Trinitas Medical Center, which resulted in anoxic encephalopathy. He was readmitted to Trinitas in July 2008 with a diagnosis of renal failure. He received dialysis treatments, remained on a ventilator, and feeding tube. The physicians at Trinitas diagnosed Mr. Betancourt as being in a persistent vegetative state and told the family of their intention to stop dialysis and allow him to die.

 “We do not decide the issue but raise it to emphasize why the “thin” and disputed record is so critical to a full analysis.”

The Superior Court in New Jersey (trial court) held a two day hearing and thereafter enjoined the hospital from withdrawing life support without the consent of Betancourt's daughter, Jacqueline, who was appointed his guardian. Mr. Betancourt remained at Trinitas, on the ventilator, receiving dialysis and on a feeding tube until his death in May 2009. The case nevertheless went forward because the attorneys argued that this dilemma is a common occurrence and needs to be clarified by the court.

What this court clarified is that insufficient evidence was presented to consider the issues of withdrawing life-sustaining treatment.  As I pointed out in my previous post: 

            “… the physicians caring for this patient are required to place before the surrogate all medical evidence.

1.        CT and MRI scans,

2.        EEGs,

3.        All respiratory records and any potential to wean him from the ventilator. 

4.        Does he have a tracheostomy?

5.        Are his serious bed sores being tended to or ignored?

6.        What infectious disease is he suffering from?

7.        Is he responding to antibiotics?

8.        To what degree was his brain damaged due to anoxic encephalopathy?

9.        Has the physicians and or hospital discussed the events leading up to the hypoxic event, or hid from it because of concern of liability.

10.      Has all evidence been preserved, provided to the surrogate

11.       Has the ethics committee reviewed the case? If so where is their written report, findings and recommendations?

12.       Have bioethicists and or lawyers participated in conferences with  surrogate?

13.           ETC.

The surrogate cannot perform the job of a surrogate in the dark. This is where detailed records of the conversations and meeting held with the surrogate, family and physicians and reports from the ethics committees are critical to the surrogate’s understanding the issues in order to make a legitimate decision.”

"The uncertainty and lack of true consensus as to Rubin's condition may generate a result that will not only apply to a patient in a non-cognitive, vegetative state, but to a patient who is impaired and in possession of some level of awareness.”

 

Attorneys representing the hospital chose not to bring necessary evidence. Attorneys pick and choose what evidence they wish to disclose as favorable to their client’s position. We can only surmise that the evidence not produced was not favorable. It is often said that bad facts make bad law. A case of great importance to so many must be decided on clear findings of fact.

“…the judge concluded that Ruben was unconscious and in a persistent vegetative state. As it was not necessary to the decision that he reached, the judge made no specific findings, however, concerning Rubin's ability to perceive pain or react to his surroundings. The uncertainty and lack of true consensus as to Rubin's condition may generate a result that will not only apply to a patient in a non-cognitive, vegetative state, but to a patient who is impaired and in possession of some level of awareness.”

The absence in evidence of the usual procedures when an impasse is reached between physicians and patients is to call for help – from consulting bioethicists and ethics committees who will bring to bear physicians of various specialties, lawyers, lay people and clergy from the community. The surrogate decision maker would then have the benefit of views - and the reasons therefore – to consider facts outside any adversarial proceeding.

There was no indication that this review or participation of the bioethics consultant, or even be ethics committee, was involved in the attempt to resolve the dispute between the patient's surrogate and be patient's physician.

Thus, the attorneys representing the hospital did not give to the trial court sufficient facts to make a decision to the grant the withholding of life-sustaining treatment to Mr. Betancourt. .  As the court said in the opinion in this case: “We do not decide the issue but raise it to emphasize why the “thin” and disputed record is so critical to a full analysis.”

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 Ruben Betancourt, 72 years old, was unconscious following the dislodging of a ventilator breathing tube after surgery at Trinitas Medical Center, which resulted in anoxic encephalopathy. He was readmitted to Trinitas in July 2008 with a diagnosis of renal failure. He received dialysis treatments, remained on a ventilator, and feeding tube. The physicians at Trinitas diagnosed Mr. Betancourt as being in a persistent vegetative state and told the family of their intention to stop dialysis and allow him to die.

The Superior Court in New Jersey held a two day hearing and thereafter enjoined the hospital from withdrawing life support without the consent of Betancourt's daughter, Jacqueline, who was appointed his guardian. Mr. Betancourt remained at Trinitas, on the ventilator, receiving dialysis and on a feeding tube until his death in May 2009. The case nevertheless went forward because the attorneys argued that this dilemma is a common occurrence and needs to be clarified by the court. Oral argument was heard in May 2010. The opinion is pending.

 The Wall Street Journal has followed this case, and The Huffington Post ran a column by Jacob Appel yesterday regarding questions of end of life duties and responsibilities of physicians, patients, surrogates, ethics committees and hospitals. The case is Betancourt v. Trinitas Hospital – and should be decided by the New Jersey Court of Appeals any day now. Mr. Appel casts the issues in this case as an economic problem:

“Are there circumstances in which patient autonomy, as expressed through surrogates, should be overruled in the name of resource allocation and/or sound medical practice? If such rare circumstances ever exist -- and I believe that they do -- then Betancourt v. Trinitas offers an excellent vehicle for the courts to clarify the circumstances under which hospitals may override patients and families.”

Firstly, neither this case nor the appeals court opinion should be used as a ”vehicle” to establish policy. Courts do not make policy; rather they apply and interpret the law. The issues here do not pit life v economics or medical care v rationing of scarce resources. It, rather confronts the proper application of the law – which is quite clear – that the decision rests with the patient. Doctors practice medicine they do not make personal decisions for other people. Nor do courts. The patient’s autonomous decision is a fundamental right that cannot be ignored and should trump other important but not fundamental rights guaranteed by the by the US Constitution.

The appropriate question that should be before the court is whether or not the surrogate decision maker, in this instance Mr. Betancourt’s daughter, was actually carrying out the duties and responsibilities of a surrogate. The job of the surrogate requires that he or she be able to, and actually does, understand the medical issues applicable to the treatment decisions that must be made. Without this understanding and the risks and burdens for the patient, the surrogate does not have the capacity or ability to speak on behalf of the patient.

Similarly, the physicians caring for this patient are required to place before the surrogate all medical evidence.

1.              CT and MRI scans,

2.               EEGs,

3.              All respiratory records and any potential to wean him from the ventilator. 

4.              Does he have a tracheostomy?

5.              Are his serious bed sores being tended to or ignored?

6.              What infectious disease is he suffering from?

7.              Is he responding to antibiotics?

8.              To what degree was his brain damaged due to anoxic encephalopathy?

9.             Has the physicians and or hospital discussed the events leading up to the hypoxic event, or hid from it because of concern of liability.

10.           Has all evidence been preserved, provided to the surrogate and brought before the court

11.           Has the ethics committee reviewed the case? If so where is their written report, findings and recommendations?

12.           Have bioethicists and or lawyers participated in conferences with physicians and the surrogate?

13.           ETC.

The surrogate cannot perform the job of a surrogate in the dark. This is where detailed records of the conversations and meeting held with the surrogate, family and physicians and reports from the ethics committee are critical to the surrogate’s understanding the issues in order to make a legitimate decision.

However, the issue of the adequacy of Ms. Betancourt’s conduct as a surrogate is not an issue brought before the court and will not therefore be decided on that question. The surrogate stated that Mr. Betancourt is a fighter and would want to fight on. But, fight on toward what purpose? The question here is whether this patient would want to continue to receive arguably futile care because of some realistic hope of survival, or to sustain life because of some religious conviction notwithstanding the diagnosis of a persistent vegetative state, or other values. Merely proclaiming that her father would want to “fight on” and keep his body alive under these circumstances is not enough to establish that she has been fully informed – no different from what every patient in this country deserves from their physicians.

Such dilemmas are not uncommon. Indeed they occur thousands of times every day in this country and throughout the world. Yet, the appeals court questioned this point at oral argument. And, unless it is a common question that needs to be clarified, then there is no reason for the court to issue a substantive opinion.

This case needs to be adjudicated on the facts and admissible evidence and not be made in to some cause célèbre or some “vehicle” to push other’s policy agendas.What must be understood by all is that end-of life cases are deeply personal matters requiring both compassion and forthrightness and transparency by all.

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Red Flags Rules require financial institutions and businesses that give credit to consumers to establish some sort of program or procedure to identify customers who may be involved in identity theft. Since most medical providers provide medical services and allow the patient to pay their bill at a later time, and in concert with insurance benefits, the FTC intends to treat medical practice as a “creditor” and thus come within the scope of Red Flag rules. “Creditor” is defined by this law as any business or organization that defers payments for goods or services.”

On May 21, 2010 the American Medical Association (AMA) filed suit against the Federal Trade Commission (FTC) to exclude medical practices from red flag - identify-theft - regulations.

The AMA argues that physicians are forced by the realities of practicing medicine to defer payment for medical services rendered and that it “would violate the norms of human decency, not to mention principles of ethical conduct...for a physician to demand payment at the time of service in such situations."  This argument will not fly too far. The FTC is not forcing physicians to cease the custom of deferring payment, only that reasonable procedures be established to “red flag” potential or suspicious patients who may be involved in committing identity theft. The FTC says red flags rules are needed to prevent “medical” identity theft.

At this point, we must determine what would have to be done in order to identify or red flag a suspicious patient and whether or not it would interfere with a practice of medicine. The ethical problem in imposing red flag obligations on physicians is that it may set up an adversarial relationship between patient and physician. Questions would have to be asked by physicians or office staff to investigate suspicious account activities, suspicious identification, and so on.  If some suspicion is aroused the medical office would arguably be required to contact some law enforcement entity or FTC or the like, to report concerns.

All of these questions raise significant concern as to the effect it may have on marginalized populations. The difficulty may not be, so much, in obtaining general information by medical office staff, but the inhibition or intimidating chilling effect it may have on patients seeking medical care to be asked for various forms of identification, proof of residence (telephone bills, gas company bills, canceled check for rent and the like). Also, Red flag rules  imposed on medical practice may be used to uncover immigration status. We must keep in mind that it is not the finding of actual identity theft that is the problem but the investigatory process required by red flag laws that will intimidate and frighten patients (children included) from obtaining medical care.

Uncovering identity theft, as well as immigration status are of great importance to the safety of our economy and to prevent economic hardship or devastation. But, it should not be the job of the medical profession to participate in non-medical investigatory inquires. Strict rules applicable to the privacy of medical records are in place under HIPAA.  

Similarly, if a physician or physicians group is put on notice by some law enforcement agency, of potential perpetrator - whose names may be the same or similar to a patient -  of Identity theft such will require the physician to pursue some investigation and report back to the agency with his or her findings. The need for medical care should not be thwarted by fear.

There are significant incentives for physicians to establish some procedure for red flagging patients. The Federal Trade Commission penalties for red flag rule of violators range from $2500 to $3500 per violation.

The issue here is not the good that can result from imposing these otherwise important laws to protect against identity theft, but what bad can result from foisting non-medical responsibilities upon the practice of medicine. It will result in damage to the profession of medicine, the sanctity of the doctor - patient relationship and public health.

There has been ongoing controversy over these laws. On May 28, 2010, the FTC again delayed the implementation of the law until December 31, 2010. The lack of clear definitions as to who is and is not required to pursue some red flag program is the primary reason for the delay. 

Bernard W. Freedman, JD, MPH

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At present the Missouri State Senate is considering new legislation (SB 365), which means to provide health insurance coverage for Phase I and Phase II clinical trials for cancer treatment. The law in the state of Missouri presently limits mandated insurance coverage to Phase III and Phase IV clinical trials.

Aside from the fact that this bill makes no sense whatsoever, it highlights the ignorance of what Phase I or Phase II trials are intended to accomplish. SB 365 seeks to force insurers, non profit health services plans, or health maintenance organizations to treat Phase I and II trials as if they are treatment – beneficial to the patient – which they certainly are not.  Since neither Phase I nor Phase II clinical trials are deemed treatment, or have any reasonable expectation of any real benefit to the patient, it makes no sense to compel payment for claims unrelated to actual health care treatment. 

Phase I trials are used solely to determine levels of toxicity of the drug being investigated. Phase II trial try to determine if the drug being investigated has any effect on the underlying disease, in this instance, cancer. Prior law in Missouri did make some sense by requiring insurance coverage for phase III and phase IV clinical trials would be covered because of, at least, the opportunity of benefit the patient i.e. actual therapeutic treatment. 

The bill then, in contradiction of the scheme of clinical trials, requires that “available clinical or preclinical data must provide a reasonable expectation that the treatment will be superior to the non-investigational alternatives.” This is outright stupidity because by the nature of phase I and phase II clinical trials there cannot be any clinical or preclinical data that provides any reasonable expectation that there is any treatment, actual therapeutic care, that will be gained. The bill seems to suggest that the patient will benefit from coverage for “routine patient care costs incurred for drugs…” The proposed legislation, however, defines “routine patient care cost” are the necessary costs needed to administer the drug under evaluation in the clinical trial, not actual care and treatment that will protect the patient. Accordingly, this proposed legislation is a sham, forcing insurers to pay for investigational drug research being performed by pharmaceutical companies, government, biotech companies, academia and privately run (outsourced) clinical trial programs.  

      All costs for Phase I and II trials should be born by the research investigators, including all necessary medical costs for the patient’s underlying condition as well as care during the clinical trial and thereafter to the degree that treatment is related to ill effects or adverse reaction to the drugs or medical devices being investigated.

This proposed legislation is unconstitutional by interfering in the right of freedom of contract because it requires payment for things outside the purview of the insurance contact for actual medical, therapeutic treatment.            

Many states are considering, or have passed, similar legislation. For example in Arizona (SB 1213 2000) requires cost for patient care associated with clinical trials phase I through 4. Yet coverage is limited when no clearly superior non-investigational treatment exists. California has passed the same legislation limited to , “when no clearly superior non-investigational treatment exists.” The confusion here is that neither Phase I or Phase II trials are “treatment.”

Colorado (HB 09-1059-2009) requires a similar coverage, but only when the physician believes that the patient may benefit from the clinical trial and when the patient has a disabling progressive or life threatening condition.

Connecticut (SB 325-2001) mandates coverage, but only in Phase III clinical trials and only if they involve “therapeutic intervention.” This legislation makes sense because it is limited to instances of “therapeutic intervention.”

Similarly Delaware (SB 181-2001) mandates coverage only when the clinical trial provides “therapeutic intent and where the trial is not designed exclusively to test toxicity or disease pathophysiology. This would, therefore, exclude coverage of Phase I and Phase II trials.

Indiana (HB 1382-2009) is similar to the confusion of the Missouri bill because it requires cost to be paid for Phase 1 through phase IV cancer clinical trials – but only when there is no clearly superior non-investigational alternative care available, and when the clinical data shows that the care method used in the research study is likely to work as well as approved care. This condition may make sense in Phase III or IV trials but not feasible in Phase I or II trials.

North Carolina (SB 199-2001) has some interesting additions. Patients who are suffering from life threatening disease or chronic condition may designate a specialist who is capable of coordinating their health care needs and insurers do not have to pay for “investigative” clinical trials. Similarly Wisconsin (AB 617-2006) limits insurers’ responsibility for payments when trials are intended to improve the participants’ health outcome and not designed only to test toxicity or disease pathophysiology – thus eliminating mandated coverage in Phase I and II trials.

The level of misunderstanding (feigned or actual) of the purpose of Phase I and Phase II clinical trials will have to be dealt with by the Federal Court of Appeals and possibly the Supreme Court to provide constitutional clarity as well as uniformity throughout the various States.

In addition to the confusion is a significant problem of giving credence to recruiting efforts Phase I and II cancer patients by giving the impression that Phase I and II trials are therapeutic and “paid for by your insurance company.” Informed consent is especially important in Phase II and II trials. These laws summarized above should not tend to lessen the requirement of detailed and well documented informed consent.

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Each patient deserves more than a brief discussion about end of life decision-making. In  “A Piece of My Mind” section of this month’s JAMA (volume 303, No.13, April 7, 2010) Paul Kettl M.D. argues for monetary compensation to be provided to physicians for end of life discussion and planning. He fails to make clear, however, that the decision rests with the patient, not what is best for the family.

Physicians must be careful not to wear too many hats and should turn to skilled clinical bioethicists and if necessary the Hospital Ethics Committee for review and recommendations. This will protect the patient’s interests and dignity and the physicians involved in the care from liability. Legal and ethical issues applying to the withdrawal of life sustaining care have become increasingly nuanced and face greater scrutiny and need for transparency. So physicians must be careful not to change hats from physician for the patient  to physician for the family.

Once a patient losses capacity to make medical decisions, many physicians down play patient wishes and seek instead to satisfy family needs. It is not the degree of burden on the family that must inform decision-making. It is what the patient wants that prevails. The patient remains the patient, not the family.  Indeed, it often relieves the family and friends from the overwhelming burden of “deciding” what will happen with respect to withdrawing or withholding life sustaining care. In my experience, surrogate decision makers feel more in control and can make more informed decisions if they are told: “This is really not your decision. We are not asking you to decide if your wife should live or die. We are asking you, because you know her best, to tell us what she would want if she could speak for herself. In order for you to do that the physicians caring for your wife will tell you all the important medical factors, just as they must tell any patient.”

Different disease processes have different disease trajectories that allow the physicians to plan – with their patient - for medical decisions that will have to be confronted down the road. For example, different types of dementia have varying trajectories of cognitive decline. Decline may run from 2.7 to 6.8 years from first diagnosis. Initially cognitive function may not change at all from 9 to 35 months. Thereafter rate of decline vary significantly among patients.  

Dr. Kettl, a geriatric psychiatrist, advocates for payment to physicians to spend the necessary time when patients still have the opportunity to contemplate and develop health directives with the advice and discussion with family and close friends. It is a time when a patient may ask detailed question of her doctor about: prognosis of quality of life; distinguish between ordinary and extraordinary treatment decisions. It is also the time to make non medical decisions including where the want to die, at home or in hospital; the desires for the timing of initiating palliative care and to withdraw or withhold treatment that may only serve to extend the dying process. Early discussion avoids fear that comes when decisions must be made quickly and without the benefit of the patient’s clear and autonomous choices.

Withdrawing care that will result in the death of a patient cannot be treated cavalierly. That is why hospitals must have in place well developed procedures and protocols surrounding any decision to withdraw life-sustaining care. Compensating physicians is crucial to allow specific time, and timely discussion, with the patient before loss of capacity sets in.    

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 It has been 17 years since this bill was first introduced.

The New York State Senate will pass the Family Health Care Decisions Act (FHCDA), setting forth clear guidelines for family members and others close to the patient to make medical decisions for incapacitated patients. It will also provide physicians with uniform protocols to follow. In many instances there will continue to be confusion and concern for the rights of the patient. Diligent and thoughtful efforts will be needed to apply these guidelines properly. The following are some of the important points for clinicians:

If there is disagreement about whether the individual lacks decision-making capacity, the matter is referred to the hospital or nursing home ethics committee for resolution.
 
       
The FHCDA directs the surrogate to make decisions in accordance with the patient’s wishes, including the patient’s religious and moral beliefs. 

A surrogate may withhold or withdraw life-sustaining treatment for an individual if that individual will die within six months with or without treatment, as determined by two independent physicians, and treatment would be an extraordinary burden to the patient.

A surrogate may also withhold or withdraw life-sustaining treatment if the patient has an irreversible condition, as determined by two independent physicians, and treatment would involve such pain, suffering, or other burden that it would be inhumane or extraordinarily burdensome to provide treatment under the circumstances. 

 
For Individuals Without a Surrogate:

The attending physician to act as surrogate for routine medical treatment. 

For major medical treatment, a physician may act only upon the concurrence of another physician that such major medical treatment is necessary. 

A physician may withhold or withdraw life-sustaining treatment for individuals without a surrogate only upon the independent concurrence of another physician that life-sustaining treatment offers no medical benefit to the patient because the patient will die imminently and the provision of life-sustaining treatment would violate accepted medical standards.

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The Senate Judiciary and Public Affairs committee in New Mexico passed (5 to 4) the Domestic Partnership Bill - 800 pages long that gives unmarried same-sex and opposite-sex couples the legal protections and benefits of married couples on issues including medical decision-making. It is anticipated that republicans will oppose.

It must be made clear that patients are not restricted in nomination who ever they want to act as their surrogate decision makers. It is the person who best knows the patients wishes and values that should act as the surrogate decision maker in all instances.

Some states provide for priorities to family members, for example, calling for the spouse to make decisions, if they agree. The patient however can overrule this by nominating who they wish, irrespective of family or other relations.

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A recent article in the Journal of the American Medical Association, JAMA, discusses the need for effective public health announcements to encourage people to explain their end of life wishes and their values, goals and preferences. It has been well established that physicians are reluctant to discuss end of life choices with their patients and the norm has been to put it off until the patient is in advanced terminal disease when it is, indeed, more difficult to discuss. Studies have also shown that the majority of patients said they would choose to forego futile care but few are presented with this option.

The failure to have this conversation at an appropriate time may end up having the patient frightened and confused and unable to have a meaningful discussion after being fully and intelligently informed about the risks of further treatment and the progression of their illness and the physicians frightened to raise the subject late in the game and give their patient the impression that he or she is being giving up on.

Legislation was proposed in recent Health Reform bills requiring physicians to “offer” to discuss advanced health care planning was met with chants of “Death Panels” in the media partly as a result of prior vice presidential candidate Sarah Palin’s claim’s of “Death Panels.” She based this on President Obama’s choice for Chair of the NIH Department of Bioethics and concurrent, and seeming conflicting position, as White House Office of Management and Budget - Ezekiel Emanuel. Emanuel has forthrightly stated that young children and elderly should not receive basic health care, not only in times of epidemics or pandemics but in general as it applies to scarce medical (economic) resources. This was easy fodder for Palin’s accusations of death panels in proposed health reform legislation.

In the JAMA article Drs. Terri Fried and Margaret Drickamer; argue for public health announcements to urge advance care planning.

“Delivering these messages will require broad outreach,such as through the use of public service announcements.…Although the process of personal participation in ACP should take place on the clinical level with an individualized interaction between patient and clinician, the process of encouraging participation in ACP must occur on the population level

This will be difficult especially t this time because of recent increased mistrust of government proposals. In my view the trust exists between physicians and their patients and thus the answer lies in vigorous efforts to educate medical students and physicians in the need for, and the methods of discussing advanced care planning at an appropriate time. 

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Physicians continue to tell patients what they would do if it were their mother. This is just another form of paternalism and disregard for autonomous decision making.

Physicians remain exceedingly reluctant to confront the difficult subject of end of life care. The New York times, on January 11, 2009 published an article, by Denise Grady, - “Facing End-of-Life Talks, Doctors Choose to Wait.” Discussing a survey of 4,074 doctors who took care of cancer patients, who had only four to six months left, but was still feeling well. 65 percent said they would talk about the prognosis, but wait to discuss end of life preferences.

Dr. Daniel Laheru of Johns Hopkins Oncology Center explained: “The natural tendency is not to provide more information about this than you have to,” - “It’s such an uncomfortable conversation and it takes such a long time to do it right.”

Yet, delaying the discussion invites confusion as to what the patient wants, overwhelming grief for the patient, family and close friends and the wasting medical resources and results in unnecessary expense. Physicians must get used to using the trajectory of disease to guide them in choosing the right time to discuss patient "preferences"  and not limit the discussion to the right to refuse treatment.

As Malcolm Fisher, Clinical Professor, University of Sydney, Intensive Care Unit, explained so well: “If you don't talk early you'll lose your voice.”

                   “If you don't talk early you'll lose your voice.”

Built into some legislation in many states interprets “autonomy” in end of life cases as the "dignity" to refuse treatment and avoid what is termed a protracted death – but not the opposite. There is generally not an explanation that a patient may demand the continuation of life sustaining treatment and make that clear in an advance health directive. This slant on autonomy has caused some patients to be fearful of obtaining, or even discussing, advanced health directive with their own doctors, leaving their physicians without the benefit of knowing their wishes. It is meaningless and ludicrous for physicians to guide their patient with an indication of what they would recommend to their mother.  Saying "if it was my mother, I would..."  is an irrelevant  way around    obtaining an actual informed consent.

                                                  Death Panels

The perception by many people, including physicians and nurses, is that advance health directives are used only to refuse life sustaining care. Thus, the feared “death panels” loom in the minds of many people. Many commenting and discussing advance health directives limit their discussion to refusing treatment, chanting the slogan of a "Right to Die." This is a misinterpretation of the  "Patients Self Determination Act, passed by the United States Congress in 1990. There is no "right to die," there is a right to indicate, in advance, one's preferences for medical treatment if they are unable to make their wishes known during some future incapacity - this encompasses one's preference to receive treatment as well.

Clinical bioethicists must work to dispel this dangerous assumption. Forms provided by States and directives provided by hospitals or prepared by lawyers must make this conspicuously evident.

It is not the job of Bioethicists to emphasize the right to refuse treatment, but instead to make clear the right to deliberate, after being fully informed on all important issues, risks, alternative methods of treatment, and quality of life expectations. It is the job of Bioethicists to educate physicians during times of conflict as to the applicable ethical precepts and legal requirements.

We should use the word “autonomy” not as a conclusion, but as a starting point, not to merely ask the patient what they want to do, or a surrogate decision maker what they think is best, but to begin a process of communication including all consulting opinions to evaluate the risk to burden of disease and quality of life. This is where we may find what is really meant by the word dignity.

So, autonomy, then, is a concept intended to inform our approach to the patient as well as a basis to respect a patient’s perception of their own life.

It is critical for us to understand the capability of a patient’s or surrogate to understand and deliberate on the medical issues. Just because someone has been named as a surrogate decision maker does not mean that that person is capable of listening, deliberating and deciding. If not, they cannot legitimately act as a surrogate and can therefore, with proper documentation, be disregarded. A second surrogate is often listed in an advance directive. Otherwise there can be an effort made to identify another person who knows the patient’s values. If all fails, the ethics committee can be convened to assist the primary treating physician.

These issues must be sorted out, not assumed. Bioethicists should be able and competent to assist or mediate most controversies, as well as assist an ethics committee in considering the applicable ethical and legal issues.

Questions for bioethicists to consider:

1. How do we educate surrogate decision makers as to their acceptable roles and duties?

2. When should we decline to follow the apparent wishes of the patient, or the stated desires of the family?

3. When is it prudent to exercise what is known as the “therapeutic privilege” and turn to a more paternalistic approach to patient care?

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New Reform Medical Center

Serving your Community since 2010

Agreement and Release

As you enter this Hospital you understand, acknowledge and agree that this hospital rations medical care and services. This means that the hospital and physicians can determine that you may not be entitled to certain medical treatment, even if it is of benefit to you. Your physicians and hospital may conclude that medical costs to the community outweigh the benefits of the otherwise beneficial medical treatment for you, if one or more of the following criteria exist:

Age, (younger than 5 or older than 68);

Mental Abilities, (e.g., Dementia, Parkinson's disease, Schizophrenia);

Economic status, e.g., having exhausted all savings and home equity;

Your ability to contribute to the community in the future;

Non-existence of family and friends to object to our withholding medical treatments;

Other factors unique to you, personally.

Your understanding and acceptance of this agreement will benefit others of your fellow citizens through savings of scarce medical resources. Thank you for making medical care assessable for others.

I, (Patient’s Name) hereby release this hospital and any and all physicians who may participate in my medical care from any and all claims of negligence or wrongdoing of any kind.

Ezekiel Emanuel, M.D.

National Chief of Medical Reform

Dated:                                                                        _______________________________

                                                                                  Patient/Power of Attorney/Surrogate

Approved by the US Government and Consensus Entities

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In Bioethics we learn that the patient has a right to make autonomous decisions. There has, however, been a bias built into to applicable legislation in many states, which interprets “autonomy” as the dignity to refuse treatment and avoid what is termed a protracted death. This slant on autonomy and the right to refuse treatment can cause some patients to be fearful of having an advanced directive, or, cause death due to withholding of artificial life support when not intended or requested by the patient.

It is not, the job of Bioethicists to emphasize the right to refuse treatment, but instead the right to deliberate after being fully informed on all important issues risks, alternative methods of treatment, and quality of life expectations.

Similarly, it is not the job of a Bioethicist to assist in effectuating the perspective or opinion of a patient’s physician, but rather to educate the physician during times of conflict as to the applicable ethical precepts and legal requirements.

We use the word “autonomy” not as a conclusion, but as a starting of point, not to merely ask the patient what they want to do, or a surrogate decision maker what they think the patient would see as best, but to begin a process of communication including all consulting opinions and discussions of cultural and religious and personal beliefs about morality, human rights and fundamental ethical treatment and respect for the patient. This is where we may find what is really meant by the word dignity.

So, autonomy is a concept intended to inform our approach to the patient as well as a basis to confidently respect a patient’s perception of their own life. It is critical for us to understand the ability to proceed and understand, and the actual potential of deliberating on medical decisions by a patient. These issues must be sorted out, not assumed. The degree of explanation to a patient, and the duties of the patient’s physician, changes with each patient, the unique effects of the disease or illness in terms of the patient’s experience and quality of life. Issues of undue influence must a part of our consideration, including pressures from family and financial motivations on the part of utilization reviews and the like.

How do we educate the patient’s surrogates in their acceptable role and duties?

When should we decline to follow the apparent wishes of the patient, or the stated desires of the family?

When is it appropriate to exercise what is known as the “therapeutic privilege” and turn to a more paternalistic approach to patient care?

Each of these questions may open up a Pandora's box of problems, but nevertheless must be confronted with the assistance of Bioethics consultations, mediations, and assistance from appropriate consulting physicians.

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This is the kind of case that courts dread. Baby RM has congenital myasthenic syndrome (CMS) and is on a respirator. The physician supports the mother’s request to terminally extubate. The father implores to the contrary. To make a decision the court must hear evidence, the kind of that will provide a clear picture of this child’s diagnosis and most importantly prognosis - short term and long term.

Before the court can make a ruling this dilemma is best brought before the hospital ethics committee to review this case in detail, hearing from any physicians who are most familiar with this child’s problems, for example, pediatric pulmonology, pediatric neurology and physical therapy who could possibly work with this child – or not. The ethics committee would properly be composed of physicians from a variety of medical specialties, lawyers, lay people and clergy. 

Thereafter, a written explanation and recommendation would be provided. Quality of life at present does not necessarily reflect the probable quality of life in the future. This ethics committee process is designed to confront severe dilemmas in medicine with the experience of having done so numerous times before, should be of great assistance, both to this child’s physician, parents as well as the court - if still necessary.

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At the 42d meeting of the American Society of Nephrology in San Diego this week, entitled “Renal Week,” Elisa J. Gordon, PhD, MPH, of Northwestern University presented a study on informed consent, that found that  “kidney transplant consent forms are written at considerably higher reading levels than they should be.”

She is of the view that consent forms should be written at a 5^th to 8^th grade reading to ensure that transplant candidates are well informed about transplantation processes, understand the material, and can provide informed consent.

My concern is that many physicians see forms as a satisfactory replacement for actually sitting down with a patient and explaining, not only generalized information regarding kidney transplants but also the specific and unique condition, risks and prognosis for each patient.

Physicians must not labor under the impression that a form satisfies their legal and ethical obligations for a real consent based upon all material information. If the question of informed consent is ever raised in a legal setting that form will not solely provide evidence of an actual informed consent.

This process should not be delegated to a medical assistant to “get the form signed.” The format and language used should, as Dr Gordon stresses, be assessable by all. Care however must also be taken to document the informed consent process and an explanation provided of the ability and level of understanding the patient or his or her surrogate decision maker. 

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Transparency:

The salient ethical, moral and principle necessity to terminal extubation is the transparency of the conduct of all physicians and medical staff, and fundamental understanding by the patient family and or friends as to why it is being done and how it is being done. It is therefore the obligation of the primary treating physician (PMD) to assure full communication and full documentation.

All must keep in mind that the critical distinguishing factor between terminal extubation and physicians assisted suicide is the patient’s rejection (by the patient of patient's surrogate) of artificial life sustaining treatment followed by the alleviation of pain and discomfort of the dying patient. Unambiguous documentation must avoid any appearance of physician assisted suicide. Only by being forthright about these factors can real transparency exist. 

It is the fundamental right of all patients to reject medical treatment after all risks have been explained and all options presented. It is this rejection of treatment by a patient that distinguishes the act of caring for the patient from assisting in a patient’s suicide. The principle of the “double effect” in the use of elevating doses of opioids that may depress the respiratory system that is intended to diminish or alleviate the patient’s pain is not considered assisting the patient to end their life. Although ordering of opioids may hasten death it is the intention of alleviating pain after and only after, the patient’s refusal of life sustaining treatment. After a patient is extubated, the goal of medical care must shift to the treatment of symptoms.

Families will receive complete explanations that death will occur after an unknown period of time after extubation. Whether a family should be present during terminal extubation may depend upon their complete understanding and acceptance of the act and its consequences. It is generally best to have family and friends leave the room at the time of extubation.

Protocol:

1.            Terminal extubation can only be performed after a collective decision-making process. It should be discussed by a group, for example, Primary Treating Physician and any of the following; Consulting Pulmonologist; Respiratory Therapist; Bioethicist; Nursing Director of Critical Care; and Critical Care Nurses involved in the patient’s care.

2.            If possible, at least a 24-hours period should pass from the time of the decision to the time of extubation. If a surrogate has made the decision, the surrogate must review, understand, sign and have witnessed a Form for Withdrawal of Treatment. It is wise to offer the opportunity for the surrogate decision maker to meet with clergy. In light of the recent case law it is appropriate to ask the surrogate decision maker if there is someone in the family who is objecting to the terminal extubation. This will serve to protect the patient life as well as the physicians and hospital from potential liability for terminally extubation of the patient when a family member is objecting. If this cannot be worked out court assistance may be necessary for the protection of all concerned. (A sample form is included below).

3.            The PMD should personally perform or supervise terminal extubation. Involvement of the PMD reflects the importance of end-of-life care and sensitivity to the family. Terminal extubation therefore should not be seen or conducted as an everyday medical procedure. The PMD must be sensitive in providing any cultural or spiritual factors needed to allow the utmost respect and dignity to the patient, family and friends.

4.            NOTE: Patients who are in a minimally conscious state or have a non-terminal illness will require the Ethics Committee to meet and confer directly with the PMD and relevant consultants and review all necessary medical records before a decision to terminally extubate may be made. In this regard the PMD and Ethics Committee must determine that there is clear and convincing evidence that the patient would reject artificial life sustaining treatment under the medical circumstances existent at that time. All family and friends who can be reasonably located will receive notice of the intent to terminally extubate and given at least 24 hours to object. If there is any objection, risk management and legal counsel will be consulted immediately. 

Notification of Death

Notification of death should be delivered in person, whenever possible by the PMD. The family frequently must be contacted by telephone if they are not present at the time of death. Family notification may be accomplished by any physician or nursing staff and should be documented.

 For an excellent discussion, see: http://www.google.com/search?client=firefox-a&rls=org.mozilla%3Aen-US%3Aofficial&channel=s&hl=en&source=hp&q=www.ethics.va.gov%2F...%2FNET_Topic_20050330_Terminal_Extubation.doc&btnG=Google+Search

Bernard W Freedman, Bioethicist

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The Los Angeles Daily News, July 11, 2009, wrote, “One doctor, who chairs the Northridge Hospital Ethics Committee, did raise the important and relevant issue of excessive, costly, end-of-life care that has no potential for significantly extending life. If consumers had to pay a significant copayment, they might not demand unreasonable or unadvisable care."

http://www.dailynews.com/editorial/ci_12817975

If this physician actually said this, of which I am doubtful, then it must be pointed out that a decision to terminate life sustaining treatment based on or informed by economic considerations is unethical and of great concern. Discussions of terminating life sustaining treatment must be grounded in evidence of the patent's intent, degree of suffering, quality of life, etc., but certainly not by demanding payment from people to persuade them to stop medical treatment and die.

Bioethics deals with the application of ethical and legal principles in medicine, not economic expediency. Physicians, and ethics committees across the nation struggle to understand each patients needs and wishes: what dignity means to them,– their religious, ethnic and racial points of view - their fears, mistrust and sometimes misplaced trust which may result from the undue influence of family, friends, business associates and others. As the California Court of Appeals wrote: “…the decision must ultimately belong to the one whose life is in issue.”

There are many people who appropriately face the economic realities of everyday hospital services. Reducing medical costs, oversight of physician owned hospitals who often generate higher costs due to the ordering of tests which have an economic benefit for the physicians ordering the tests, defensive medicine, reducing medical errors that result in serious injury and run up unnecessary medical costs, sometimes for patients who will need specialized medical care for the rest of their lives.

But, it is not for the chair of an ethics committee to declare what life is worthy of receiving life sustaining care based upon economic principles. Physicians and ethics committees must deal with the individual patient, one patient at a time.

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A South Korean Ethics Committee uses a staged approach to Withdrawing Life Support

In follow up to this blog’s April 23, 2009 post: “Letting the Conscious But Incompetent, Non Terminally Ill, Patient Die.” A South Korean hospital used a staged approach to consider the withdrawal of artificial life support based upon the condition of the patient.

On June 11, 2009 an Ethics Committee at the Yonsei University Severance Hospital in Seoul Korea decided to remove a 77-year-old woman in a vegetative state from a respirator in accordance with a Supreme Court ruling. 

Severance Hospital President Park Chang-il said:

   

“Though we should comply with the Supreme Court ruling, the patient is not facing impending death. So after conducting several meetings, we made the decision,” … “Under the three-stage guideline for death with dignity we came up with, we will make a prudent decision for patients who are in the second stage like the patient in question.”

Stage 1: patients facing impending death due to irrecoverable diseases such as brain death or impairment of multiple organs.
Stage 2: Patients in a vegetative state on respirators.
Stage 3: Patients able to breathe on their own.

Life support for patients in the first and second stages will be removed when certain criteria are clear such as patient self-determination, family consent and the ethics committee’s conditions are met.

In the light of the case discussed in the April 23 post, ethics committee should be required to pursue, with greater scrutiny depending upon the cognitive level and medical condition of the patient. It is unlikely that the ethics committee in Seoul would have approved of discharging a conscious but incompetent, non-terminally ill patient and resultant death.

Remember: The greater the cognitive and medical condition of a patient, the greater the level of scrutiny that is required before life sustaining treatment can be withheld or withdrawn. The greater the ambiguity the more need there is to err on the side of protecting the patient and to err on the side of life. Such an effort serves to protect the life of the patient and protect physicians and hospitals from potential liability.

 

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I agree with the court’s rulings in the case of Daniel Hauser, highlighted in the media recently. In this case there is as absolute need to continue chemotherapy. It should however be pointed out that the Court ignored Mrs. Hauser’s demand for confidentiality and contributed to this case becoming a spectacle in the media and making Mrs. Hauser the focus of overwhelming media attention, pitting her beliefs against most of the country's. This injudicious conduct may have contributed to the panic of the mother to leave the jurisdiction and hide herself and her son.

The legal issues in this case are, as noted by Arthur Kaplan, from the University of Pennsylvania, on Anderson Cooper's program, are easy. Dr. Kaplan also noted that in many cases psychologists come on board and are generally successful in swaying the family and the minor patient toward recommended treatment. People struggle with medical decisions to withdraw and withhold medical care each day. Many of these dilemmas deal with children. Irrespective of the religious beliefs of the parents this child would nevertheless be required to undergo chemo therapy over the objections of the parents. If the parents were members of the Church of Christ - Christian Science or Catholics, Jews, Muslims, Jehovah's Witnesses - the same legal and ethical issues would have to be confronted.

Patients and their physician, family and friends need to feel free to turn to the court for assistance in controversies surrounding withdrawing and withholding medical care without fear of becoming involved in a media circus.

In this instance the parents adhered to beliefs of a Native American religion.Judge Rodenberg, without any legitimate connection with the legal issues presented, chose to publish his confidential question and answer cross examination of Daniel Hauser, on the court's web site, including inquiry about a Native American religion. This would not have occurred with other more traditionally recognized religions. There is no religious justification to withhold life saving treatment from a minor and the Judge had no legitiamate reason to make it a focus of inquiry.

The Judge ignored Daniel Hauser's right as a minor to confidentiality and this testimony should never have been published.

Daniel Hauser's physicians ignored their bioethical duties to utilize the services of a clinical bioethicist, a psychiatrist or psychologist to intervene and assist in facilitating the exchange of information regarding different treatments and the effectiveness, risk and effect on quality of life of these treatments verses the failing to treat.

If the testimony of Daniel Hauser is accurate, his personal physician never actually sat down with him and established a line of communication  and did not engender a sense of trust.

P 25 of Daniel’s testimony:
Q.  So he [Dr. Bostrom] did not actually tell you, you had cancer?
A.  Right.

Q.  Okay, so you learned of that from your mother?
A.  Right.
…
Q.  So you and Dr. Bostrom never talked to you like I am talking to you right now?
A.  No.

Daniel was able to understand the purpose of his biopsy procedure, the necessity of determining and distinguishing types of cancer, the need for an ultrasound and that ultrasound reflected the possibility of a pulmonary embolism, which could lead to his death.  

Page 39:
Q.  There was a problem with your left arm at some point?
A.  If I moved my arm too much or jerked it, it could break off and go to the heart and I could have a heart attack.

Q.  Did someone tell you that?
A.  Yeah, the nurse did... I think they did an ultrasound or something……… I think (my arm) was warm…they found it was a clot and they said that could cause problems if it broke loose?

So, after one time of chemotherapy he experienced significant illness, weakness, and was caused to fear for his life.  The judge did not directly ask him nor did he indicate any conversation with his physicians in which he was told that his life depended on him receiving continued chemotherapy.

Notwithstanding his age and his inability to legally consent or refuse treatment, a 13-year-old patient should be told, on a level that he can understand, of the ramifications and risks of accepting or refusing therapy.

Medical Confidentiality:

On the issue of the medical confidentiality Daniel was entitled to have his medical care and medical history kept confidential.  Notwithstanding his mother and/or father’s refusal of treatment, Daniel, through his mother demanded confidentiality. Mrs. Hauser specifically asked the judge to maintain confidentiality for her son.  

Page: 60.  Mrs. Hauser asked the court for a private conversation.

Mrs. Hauser’s demand: “I do not want this out of this room, okay?”

Judge Rodenberg responded:

“Well although you need to be mindful… my plan was to file a copy of the [Daniel’s testimony and medical information] … because – just so you are understanding, the public has a [page 61] legitimate interest in knowing what happened here today.”

The public, because of media attention, may be interested in a lot of things, yet, that does not mean that a patient loses his right to keep his medical care confidential. There is no evidence that Daniel Hauser ever put himself into the “public arena” and waived any confidentiality with respect to his personal life and/or medical care. Confidentiality should have been maintained.

If the court views that disclosure of information is necessary, than historically, the full name of the patient is kept confidential and the case is referred to as, for example, In re Daniel H.

For the Supreme Court of the United States, Justice Rehnquist wrote:

It is a hallmark of our juvenile justice system in the United States that virtually from its inception at the end of the last century its proceedings have been conducted outside . . . the public’s full gaze and the youths brought before our juvenile courts have been shielded from publicity. (Smith v. Daily Mail Publishing Co., 443 U.S. 97, 107, 99 S.Ct. 2667, 2671, 61L. Ed. 2d 399 (1979).

In West Virginia for example, in a case involving education records, the state Supreme Court of Appeals recognized the public policy of protecting the confidentiality of juvenile information in all court proceedings:  
    
"we are loathe to allow one of the last bastions of privacy, juvenile confidentiality, to be diminished in the least bit,"

 Unfortunately, normal and customary procedures for dealing with ethical issues in the medical community were not utilized and basic law protecting a child’s right of confidentiality were cast aside.



Bernard W. Freedman, JD, MPH


 

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HEALTH AND SAFETY CODE CHAPTER 166.039.

PROCEDURE WHEN PERSON HAS NOT EXECUTED OR ISSUED A DIRECTIVE AND IS INCOMPETENT OR INCAPABLE OF COMMUNICATION

For the most vulnerable patients, without friends or family, life for some medical patients in Texas, is cheap.  On vague and specious grounds and without proper oversight or transparency, physicians may withdraw life sustaining treatment from a patient, even if the patient is conscious, talking, and aware of his or her surroundings. This statute allows this to occur if a physician treating the patient concludes that the patient will die within six months and there is no advance health directive to the contrary.

There is a fundamental liberty interest which permits a patient to refuse life-sustaining treatment. There is also a fundamental constitutional right, which each person has, to his or her life.  This right is protected by the due process clause. Yet, Texas law makes a presumption that leads to an unjustified decision to withdraw life sustaining treatment. The statute declares that merely because a patient has not filled out or written an advance health directive does not mean they don’t want to die.  So, under Texas law, a conscious, but incompetent patient will be allowed to die if a physician, with “reasonable” medical judgment decodes that the patient will die within six months. “Reasonable” medical judgment is a low standard for the death of a patient. It does not require a "probability of death" with 6 months – only a reasonable and unchecked judgment. Moreover, the available safeguards which would require the review by a hospital ethics committee, or a court of law, is not a hurdle that is required to be cleared before removing the patient from life sustaining care. As long as there is no advanced health directive, and no family or friend to object, a physician can order the cessation of life support, if a non-treating physician or a member of the ethics committee agrees. Nor is there any effort or requirement of due diligence that must be made to locate friends or family.

In looking at this statutory scheme we should keep in mind the words of another Texan:

           "You do not examine legislation in the light of the benefits it will convey if properly administered,but in the light of the wrongs it would do and the harms it would cause if improperly administered."
Lyndon B. Johnson

A conscious competent patient (with a terminal illness) who asks for help to end suffering may not be helped by their physician to end her life. This is considered physician-assisted suicide and is prohibited by law.  However, under Texas law, a conscious patient who cannot decide for him or herself, and therefore needs the utmost protection, can have life-sustaining treatment independently halted by their physician and die without violating the patient’s constitutionally protected right to life. To overcome a fundamental constitutional right a full and comprehensive review of all relevant facts, opinions, motivation, bias, undue influence, is guaranteed by the due process clause of the fourteenth amendment. Why were these safeguards unconstitutionally cast aside by the Texas legislature?

It is clear that the right of a patient to withhold or withdraw from any treatment, including life sustaining treatment, is predicated on a legal tradition protecting the autonomous decision to refuse unwanted medical treatment. However, we must be careful to make the distinction that the right to refuse treatment is the patient’s right, not the right of a physician or hospital, or legislature. A presumption that the patient would choose death rather than life seems to be founded on a legislatively created principle that people, without known friends or family, rights can be disregarded and that the economic interest of the state is sufficient to overcome life. The Texas law that permits a casual and unregulated state imposed medical decision making scheme is unconstitutional.

In most circumstances, there are no specific statistical data on death from a specific disease within six months.  When there are one or more studies, they are based upon information gathered from different medical communities with different demographics . The data will vary based on the age, type, and extent of disease and with different accompanying disease processes.  Nevertheless, this statue presumes that a physician, irrespective of her specialty, is aware of all studies, and that all studies are based on relevant and sound epidemiological principles, and sufficiently powered biostatistical results.

In this way, patients are left to the creative medical imaginations and empirical and anecdotal experience. which will vary between physicians, that will determine a decision of life or death. 

Review by the entire ethics committee, with a written explanation, must be legally mandated. There is, at present, a Bill in the Texas Legislature to amend  this statute, Section 166.039. A requirement for mandatory ethics committee review should be included.

The Texas statute’s 6-month standard is illusory and prone to ethnic, racial, socioeconomic status and age bias. This, more often then not, will be a member of a minority group, whose family and/or friends cannot be located, or the patient is simply alone. So, the statute targets the most vulnerable patients who need the highest level of protection.

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It must not be too easy to withhold life sustaining treatment from any patient. When it comes to a conscious patient, who is not suffering from a terminal illness, we have to be unquestionably sure we know what we are doing.
    
A consulting physician contacted me expressing great concern that a 60 year old female patient who would likely die without surgery was being discharged. He said, “The patient is not terminal and is treatable. She needs surgery to survive – probably amputation of one or both lower extremities. The family wants her to be discharged home for hospice care and be allowed to pass away comfortably. The primary treating physician agrees with the family that this is best for her. This is not right.”

The primary treating physician explained to me that he had been caring for this patient for many years. She has little understanding of her underlying disease.  Her affect is flat.  He thinks that she has complete occlusion of both popliteal arteries, gangrene, and will need an amputation of the left and possible the right leg.  She has well-controlled diabetes; and recurrent VRE infections. She has bilateral pneumonia and bacteremia. She does not have the capacity to make her own medical decisions. The family wants her to be discharged home under hospice care and allowed to die comfortably.

I interviewed the patient and asked if she wanted to go home: she said “yes.” I asked her if she understood that she would most likely need to have an amputation of one or both of her legs if she was to survive. She said, ” if it is needed so I do not die – yes, I want that.”  I asked her questions about her life and family. She answered all questions appropriately, albeit with a slow response and little emotion. Her son, the surrogate decision maker, felt that she would refuse further treatment “if she understood things.”

I urged a psychiatric (was she suffering from a major depressive disorder, negative or positive family experiences, expectations of family vis a vis her illness) and neurologic consult (was she suffering from some transient mental confusion, was any medication she was taking impacting her ability to communicate or consider her options, would waiting help?)  be ordered. A consulting physician asked for an infectious disease consult. (was she suffering from metabolic encephalopathy accounting for her flat affect etc.). Thereafter a bioethics meeting could be arranged to consider all opinions to gain a overall understanding of her cognitive state. Physicians could ask questions of the family and vice versa.

A psychiatrist determined that the patient did not understand the nature and risks of her medical condition and therefore lacked capacity to make any decisions. Accordingly, her request for the surgery could be disregarded.  I discussed with him the fact that she was a non terminal patient who was conscious and responding to questions. He responded that the patient’s son's demands for discharge without further care were “perfectly reasonable and appropriate under the circumstances” as her care would be an incredible burden on the family.

The primary treating physician agreed, explaining that he was overwhelmed with the complex and unrelenting medical problems that this patient had endured. It was clear to me that he cared deeply for this patient and had struggled desperately in treating her over the years.  No further consults were ordered and the patient was summarily released from the hospital within moments of the conclusion of the psychiatric evaluation, without any further dialogue.

Ethical issues & Legal requirements:

Case law, legislation, bioethics protocols and literature have grappled, for many years now, over how best approach terminating or withholding life sustaining treatment. Most cases have confronted situations where a patient is in a persistent vegetative state, or a terminally ill patient who could avoid needless suffering and prolongation of the process of death. For example, the California legislature passed into law §4650 of the Probate Code, declaring that “…The prolongation of the process of dying for a person for whom continued health care does not improve the prognosis for recovery may violate patient dignity, and cause unnecessary pain and suffering, while providing nothing medically necessary or beneficial.”

In the conscious but incompetent, non terminally ill patient, however, these concerns do not apply. Nor are there any concerns here regarding demands for treatments that are medically futile. So, what are the ethical and legal issues presented in this scenario? A “best interest” criteria seems inapposite.  We cannot ethically conclude that this patient’s best interests are served by allowing her to die. It may be seen as beneficial to her family to avoid the burden of physically and financially caring for her. Considerations of burden on families are important and relevant, but not a justification for death due to lack of treatment.

The basis for an autonomous refusal of further treatment requires a sufficient showing, at the least,  that the patient has a clear and comprehensive informed consent, as well as time for reflection and deliberation, while understanding that death will likely follow if treatment is stopped. Case law refers to this level of proof in this situation as “clear and convincing evidence.” There, however, is no showing here that this patient would, if “satisfactorily” competent, refuse treatment. The psychiatric exam that concluded that the patient did not understand the nature of her disease process and the risks of treatment (and non treatment), did not establish anything of value. Yet, this brief, psychiatric exam  was sufficient enough to allow this patient, over my strenuous objections and pleas to stop, to be put on a gurney and wheeled out of the hospital by her son within moments of the psychiatric exam, and with out a neurologic and infectious disease evaluation. This patient understood that if she did not have surgery she would die, and that she would require one or both of her legs amputated. She understood that and asked for surgery so she could live.  What more must be required of her?

The California Supreme Court, in the case of Conservatorship of Wendland, required a showing by a conservator, of "clear and convincing evidence" that an incompetent, non terminal patient, would want to die, before life sustaining treatment could be withdrawn.

The lesson of this post, and the point to remember, is that the greater the cognitive and medical condition of a patient, the greater the level of scrutiny that is required before life sustaining treatment can be withheld or withdrawn.  We can look at this by considering six basic categories of the condition of a patient:

1.    Terminal and Persistent Vegetative State (PVS);
2.    Terminal and Minimally Conscious;
3.    Terminal and Conscious;
4.    Non Terminal and PVS
5.    Non Terminal, and Minimally Conscious;
6.    Non Terminal, and Conscious    

At each level, our degree of concern and the absolute necessity to delve further into the medical, personal, ethical and legal bases for the decision must escalate.  Primary treating physicians have help available to properly and earnestly accomplish this. Consulting physicians, clinical bioethicists, hospital ethics committees, and if necessary, courts of law, are available to achieve an ethical, legal and life and death determination.

The greater the ambiguity the more need there is to err on the side of protecting the patient and to err on the side of life. Such an effort serves to protect the life of the patient and protect physicians and hospitals from potential liability.

 

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In 1996, Pfizer needed a randomized trial for a new broad spectrum antibiotic and sent a team of its doctors into the Nigerian slum City of Kano during a meningitis epidemic. It was represented, to be a "humanitarian mission.”

A team of Pfizer doctors arrived at the Nigerian camp where meningitis had killed at least 11,000 people.  They set up near a medical station run by Doctors Without Borders who were providing standard treatment. At the Kano Infectious Diseases Hospital, 200 sick children were picked. Half were given doses of the experimental Pfizer drug called Trovan and the others were treated with an established antibiotic.

Eleven of the children died and many more, it is alleged, suffered serious side effects ranging from organ failure to brain damage. After two weeks Pfizer summarily left the camp. Pfizer denies these allegations. The company claims only five children died after taking Trovan and six died after receiving injections of the certified drug Rocephin, (ceftriaxone). It is alleged that parents were not told that their children were to receive an experimental drug. It is reported, by Pfizer, that consent was obtained from the Nigerian state and produced a letter of permission from a Kano ethics committee which was a document that was alleged to have been a backdated form approved by the committee for a medical trial performed one year after this incident. 

Certainly, such conduct raises serious ethical questions, which reportedly targeted Pfizer with civil and criminal actions. In December 2000, the Washington Post published a lengthy examination of the trial. The Washington Post similarly found that Pfizer carried out the experiment on 200 children at a makeshift epidemic camp in the northern Nigerian town of Kano. The articles reported that Pfizer had no signed consent forms for the children and relied on a falsified ethics approval letter to defend the design of the experiment. 

The Third Circuit Court of Appeals stated, regarding Pfizer’s conduct,  that "the administration of drug trials without informed consent on the scale alleged in the complaints poses a real threat to international peace and security…and  "fosters distrust and resistance to international drug trials, cutting-edge medical innovation, and critical international public health initiatives in which pharmaceutical companies play a key role. ... As this case illustrates, the failure to secure consent for human experimentation has the potential to generate substantial anti-American animus and hostility."

Comment:

The fundamental ethical predicate in randomized clinical trials is that, based upon the state of knowledge at the time, it does not establish that either arm of the trial is superior to the other.  This is generally referred to as “equipoise” without which a randomized clinical trial may not ethically go forward. To administer an experimental drug to children with meningitis when an effective proven medication is available, needlessly and purposefully exposes patients to serious injury or death.

The attempt to avoid the legal protections for patients in the United States by carrying out randomized clinical trials in Africa, is particularly damning. We should, however, keep in mind that related problems exist in pediatric oncology Phase I Trials in the United States. Phase II and III trials analyze benefits and compare results to standard treatments. Phase I studies do not. They are, simply stated, experiments with no legitimate expectation of benefit to the research subject. In order to permit a child’s participation in a Phase I trial the law requires an informed consent to the parents or guardian. ( It is not legally clear whether a parent or guardian can consent to exposing their child to unnecessarily harmful experimentation.) Telling them about risks, however, does not discharge that requirement. It is an informed consent that must be obtained, not merely offered. It must be presented to the child and parents in an unbiased way, and it must also be comprehended. Neither research physicians nor the Institutional Review Boards (IRBs) have been effective in accomplishing this task.

The tendency of research subjects to confuse their participation in clinical trials with personalized medical care is commonplace. There is an inherent conflict of interest between research physicians and child research subjects due to a misconception that treatment will be provided. This conflict may be most severe when it involves pediatric cancer patients and their parents. Children suffering from a terminal illness, whose quality of life may be eroded by pursuing hopes for survival in a phase I drug trial, where no real hope exists, need rigorous protection. Their perspective is not only a product of hope but also the result of repeated and purposeful misrepresentations by researchers and university medical centers that research subjects in phase I drug trials will receive “treatment.” Experimental toxicity studies however are not treatment. This misrepresentation has often been referred to as a “therapeutic misconception.”  

For many people a university medical center inspires a sense of awe and can engender their confidence and trust. This may account, in part, for a child’s or parent’s belief that there will be some benefit in participating in a Phase I trial.  There is a tendency in the recruitment process in Phase I trials to exploit this trust.

In a study published in the Journal of  Oncology (Perceptions of Patients and Physicians Regarding Phase I Cancer Clinical Trials: Implications for Physician-Patient Communication, three hundred twenty-eight patients and 48 physicians completed surveys regarding expectations regarding treatment outcomes. Although 95% of patients reported that quality of life was at least as important as length of life, only 28% reported that changes in quality of life with treatment were discussed with  physicians. In contrast, 73% of physicians reported that this topic was discussed.  As to risks of the Phase I trial, 91.5% of the physicians believed that they discussed the risks, while only 73% of the patients recalled discussing of risk.

Discordance Between Patients and Physicians About Consultation Content
                                                                              Physician       Patient     
Discussion Topic                                                   No.     %         No.     %             P*
Changes in quality of life with treatment              171     73.4      65      27.9     < .0001
Changes in length of life with treatment               140     59.6     69      29.4     < .0001
Changes in quality of life without treatment         145     62.5      67     28.9     < .0001
Changes in length of life without treatment          123     52.8      67     28.8     < .0001
Possible side effects from treatment                     217     92.0   184     78.0     < .0001
Possible benefits from treatment                           212     90.2    185     78.8     < .0001
Possible risks from treatment                                214     91.5    170     72.7     < .0001
*McNemar’s test.    

It is important to note that the word “treatment” is used with respect to a Phase I clinical trials. Yet, a Phase I Clinical Trial is not “treatment” it is experimental testing which, hopefully, will lead to a treatment.

IRBs are required by statute to determine, without any specific guidelines to help them, that there are adequate provisions for “…monitoring the data collected to ensure the safety of subjects."  Yet, no monitoring is generally done by IRBs. The President’s Council for Bioethics found that:

" Amazingly, no one - not the director of NIH, the commissioner of the FDA, or a representative of the Pharmaceutical Researcher and Manufacturers of America - knows how many people participate in biomedical or other research studies in the United States each year. … no comprehensive data exist on specific aspects of research. No one can say how many research participants suffer serious, unexpected adverse events each year, either for a specific study or in general, and of those, how many sustain a permanent disability or die unexpectedly. "

The problem is perhaps best described by the Chairman of the Council, Leon Kass who, in his discussion with the panel of the President’s Council, raised the issue of simply being honest with research subjects:    

"If one simply says ‘they are the only subjects that are possibly available to advance our knowledge,’ however truly necessary that it is as a condition for using them, the question is whether it’s sufficient and whether one doesn’t want to try some kind of honest way to elicit their identification with the enterprise and not simply exploit their desperation.  It’s not an objection to proceeding with the research, but the question is:  How should they be regarded?  How should they be treated?  How should they be spoken to?"

  Hence, we must not labor under the misperception that lack of candidness and legitimate informed consent in clinical trials is limited to villages in Africa. Problems exist in the United States and must be seen as work for clinical bioethicists to improve the process of informed consent in Phase I trials, especially with children, and to put in place protocols to expose conflicts of interests.

 

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Advance Health Directive:

Patient has an advanced health directive, witnessed, notarized and in the format of a legal document done by his attorney, rejecting treatment if he has a terminal condition with the probability of death within a few months; and/or an irreversible condition requiring artificial life support. Patient’s daughter is designated as surrogate. The document is notarized.
This 84 year old man is admitted for pneumonia; dementia; depression; anemia; malnutrition; renal failure, and hypernaturemia.

History: Dysphasia, anorexia, ataxia, poor intake, altered level of consciousness, restless, hypotensive, shortness of breath, bilateral rales. He is unable to give any history himself.

Admitting: Diagnosis: Acute pneumonia on top of interstitial lung disease and bronchiectasis.
The patient is intubated and noted to have renal failure, thrombocytopenia, leukocytosis, anemia, and deteriorating mental condition.

Patient’s daughter advises that her father never wanted to be maintained on artificial life support. Options are discussed with daughter, who requests that a do not resuscitate order be instituted.
Daughter advises bioethics consultant that she is waiting to hear from doctors regarding their opinion as to whether or not the pulmonary condition is irreversible, as described in the advance health directive. If so she wants to refuse continued artificial ventilation. Pending the receipt of that information she requests that no tracheostomy be performed. She insists that the patient not be sent to a skilled nursing facility.

Nevertheless, it is recommended, and the daughter consents to a tracheostomy. Daughter has not, however, been told any opinion as to irreversibility of respiratory failure. Attempt at weaning is ordered and patient is extubated. He deteriorates and is reintubated the same day. Pulmonologist, without consulting patient's daughter, writes order that patient be transferred to a skilled nursing facility.

Daughter is advised by nurse about the transfer order and refuses transfer. She reiterates that her father would not want to live in a skilled nursing facility on artificial life support. Under these circumstances he would reject continued artificial ventilation. Daughter says she does not want futile care. Patient’s daughter, and bioethics consult request a meeting with pulmonologist. There is no response from pulmonologist, one-way or the other.

The pulmonologist ceases to participate in case without any discussion with daughter. Daughter requests and signs withdrawal of artificial ventilation form. Three days later the daughter is notified that her father has been extubated and transferred to a skilled nursing facility. She, however, is unable to locate her father at that facility and is told that her father "never arrived." She calls the hospital and is told that he is no longer a patient at that hospital. She thereafter discovers, through the nursing administration office, that her father has died and that his body has been in the hospital's morgue for 3 days.

Comments:

1.    Physicians as well as patients and family often have difficulty withdrawing life-sustaining treatment. The daughter never received an answer as to the probability of death or of the irreversibility of the patient’s condition - the criteria set forth in the advance health directive. Her decisions were not informed.She felt abandoned by the pulmonologist who seemed to "just disappear."

2.    There is no obligation for a physician to treat a patient in a way that is contrary to the physician’s conscience. A physician does have the obligation, however, to inform a patient, or if necessary a surrogate decision maker, as to the diagnosis and prognosis, including risks of treatment and of non treatment. Before signing off the case the pulmonologist, should have and easily could have advised the daughter that he was withdrawing from the case and discuss options, which should have included arranging for a new pulmonologist on the case.

3.    There is reluctance on the part of many physicians to discuss end of life care and options. An Institute of Medicine study on improving care at the end of life found that there is often:
a) Overuse of care that is inconsistent with patient preferences and prognosis;
b) Underuse of care to treat symptoms;
             c) Untimely referral to hospice;
             d) Poor palliative care;
             e) Poor communication regarding prognosis and treatment preferences.

In a cohort study of 1573 patients, prolonged ventilation was not generally discussed:
         12% of patients discussed preferences with their physicians,
         20% said that they wanted it,
         80% said that they did not want it.
Annals of Internal Medicine: 1 July 1997 | Volume 127 Issue 1 | Pages 1-12

4.    After withdrawal or withholding artificial life support, the need for palliative care must be conscientiously provided to patient and/or surrogate decision makers. Responsibility for patient care does not end with a decision to withdraw artificial life support.

5.    Support for family members should continue. This case illustrates that physicians can lose interest in a patient after a decision to withdraw or withhold life-sustaining treatment.  In this instance this may have contributed to the failure to maintain a line of communication with this patient’s daughter, including advising her of her father’s death.


 

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The patient, Larry M, is a man in his 40s with a wife and three children at his bedside. He is in end stage liver cancer. He has been receiving total parenteral nutrition and IV fluids and has now decided to have his feeding tube and IV fluids withdrawn and to then return home with his wife and children, and with the assistance of hospice, die as comfortably as possible. The patient feels that this is be best for him and helpful to his wife and children to go through this process with him. His physicians fully support this decision.

Before leaving the hospital, however, the patient’s sister flies in from out of state, distraught, angry, and out of control. She cannot accept that her brother is “going to give up.”  She vehemently expresses her disdain for the physicians and for her sister-in-law’s support of her brother’s decision to withdraw artificial nutrition and hydration and leave the hospital.  In the hospital room, sister begins to yell and throw chairs around the room.  The nurse calls security. The patient requests that his sister not be escorted out of the room, and sister agrees to “calm down.”  The sister, however, continues to subject the patient’s wife to verbal abuse. The patient does not want to expose his wife to this abuse, and is concerned that after his death there will be alienation of his wife and children from the rest of the patient’s family.  Accordingly, in order to appease his sister and to protect his wife, the patient agrees to remain in the hospital with continued artificial nutrition and hydration.
The original decision to return home was freely arrived at. His new decision to remain in the hospital is not.  Nevertheless, Larry M has changed his mind based upon factors important to him: namely, his wife and children’s future relations with his family and his sister’s anguish that he, in her eyes, do all he can to survive as long as possible.
It is not the duty of a physician or bioethicist to act as security guards or family councilors.  Bioethicists can mediate the impasse. A bioethicist could privately ask Larry M if he thought it might be helpful if he, and or physician, met with his sister and other family members to discuss the Larry’s terminal medical condition and his right to make unencumbered decisions, and also consider other approaches.

Approaches to consider:
Time is often an important factor. In this instance the patient’s sister has flown in from out of state, probably in a heighten state of panic and fear for her brother. Allowing some time to pass without argument or attempts at persuasion, may allow the sister to cool down to the point of being able to understand the reasons for her brother’s decision.

 
Medicine: Family members living far from the patient have not been a part of the medical care provided or the suffering that patients have endured over the course of their illness.  Apprising them, in some detail, of the long and arduous courses of treatment and make them feel a part of the process and part of the decision making process and enable family members to support the patient wishes and to move from anger and fear for her brother to support and compassion for the patient.
Physicians and nurses may tend to loose interest in patients after withdrawal of aggressive treatment, and may be seen as abandoning the patient. So, physicians and nurses should maintain ongoing and meaningful contact with the patient and family.

In some instances, it has been shown that patients, who would otherwise elect to withdraw from artificial nutrition and hydration, continue to request it in order to satisfy the concerns of family, notwithstanding abdominal discomfort and nausea. Discussions with family and physicians and nurses regarding concerns of withdrawal of artificial nutrition and hydration are generally helpful to the patient and the family.  

 

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