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

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

• Email This
• Print
• Comments
• Trackbacks
• Share Link

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.

• Email This
• Print
• Comments
• Trackbacks
• Share Link

Efforts to encourage (or compel) physicians to lie to their patients were faced years ago when “gag clauses” were inserted into contracts between HMO’s and contracted physicians. The gag clause established a contractual obligation on the part of the physician to withhold information regarding treatment modalities that were not within the HMO protocol of allowable categories of care. 

Contractually, it is common to exclude specific types or categories of care - “We will pay for this, we won’t pay for that.” Every contract of insurance has exclusions. Gag clauses, however, go further. They contractually bar physicians from fulfilling their fiduciary duties to the patient from making clear what relevant treatments are available in the medical community. If there were more effective treatments available, the physician nevertheless had to withhold such information. Physicians, therefore, had to choose whether to breach their fiduciary duty to their patient, or breach their contractual duty to the HMO if they revealed the availability of superior care for the patient.

For a patient, there was no real choice. No information that would enable a comparison between alternative treatments, nor any opportunity to confer with other physicians regarding alternative treatments.

This, to be clear, is fraud: purposeful misrepresentation and intentional withholding of critical information by a fiduciary and relied upon by the patient to his or her detriment, namely serious injury or death.

In 1990s, the AMA asked managed care organizations to withdraw gag clauses from their contracts with physicians. Though gag clauses have drifted, we hope, out of existence, medical rationing resurrects the same fraudulent behavior and, again, attempts to persuade or compel physicians to participate in the entire charade.

Patients will have to be told the truth unless our moral foundations of democracy are to be drastically diminished. If the informed consent process is genuine it must reveal to the patient all alternative methods of treatment – whether they can afford it or not. Patients are accustomed to being told that certain categories of treatments, though needed, may not covered by their insurance. If the policy is ambiguous then that issue of coverage can be legally and rapidly challenged.

Protocols to ration health care, if they surreptitiously contribute to the worsening of illness or death, will once again be an attempt by those who make policy to encourage or compel physicians to change from their absolute loyalty to their patient to become coerced agents of fraudulent socioeconomic policy.

Part III to follow: Efforts to Ration Care and Value Based Medicine

• Email This
• Print
• Comments
• Trackbacks
• Share Link

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.

• Email This
• Print
• Comments (1)
• Trackbacks
• Share Link

Physician Liability: Withdrawing and Withholding Life Sustaining Care From  Conscious, Non Terminal, Incompetent Patients – Part II

There are different standards that must be appreciated and respected before a physician can support a decision to withdraw life sustaining treatment from a non terminal and incompetent patient.

This scenario requires the highest degree of protection for the patient. Our fundamental rights are the most important when we are the most vulnerable. Patients in this category are weak, often confused and subject to the effect of bias and undue influence. When illness requires life sustaining treatment family members may experience sympathy for the patient as well as opportunity to end their burden of caring for the patient. Some family members have said to others: "you have done so much, your life has been put on hold, how can we afford to pay for this care, etc. This can result in a request to withdraw or withhold artificial life support for what may be seen as being in every one's best interest. This often occurs in adult children caring for an elderly parent or spouse.

This responsibility for caring for patients at home falls predominantly on women. Women often care for both an elderly parent and their young children at the same time. Many, as well, must work to support the family. Yet, this understandable burden cannot be used as a justification or rationale for the termination of life sustaining treatment. Physicians must never allow themselves to place the needs of the family above the best interests of the patient. Physicians must not allow family interests to become a guide to decision making – even if it results in volatile or abusive confrontations with, or threats by, family members.

Withdrawing life sustaining care from a conscious, non-terminal patient, even if competent who refuses artificial life support, is thwart with risk for the treating physician. In a California case that was ultimately decided be the State Supreme Court, barred withdrawing artificial nutrition and hydration from a minimally conscious, non-terminal patient when there was not clear and convincing evidence that refusing treatment would be what the patient would want if able to speak for himself.

 

The function of a standard of proof is to instruct the fact finder concerning the degree of confidence our society deems necessary in the correctness of factual conclusions for a particular type of adjudication, to allocate the risk of error between the litigants, and to indicate the relative importance attached to the ultimate decision…. Thus, “the standard of proof may depend upon the ‘gravity of the consequences that would result from an erroneous determination of the issue involved. …courts have applied the clear and convincing evidence standard when necessary to protect important rights.

The legislature in Pennsylvania dealt with this dilemma by specifically codifying a limitation on physicians precluding the withdrawal of life sustaining treatment in non-terminal patients whether competent or not.

Health care necessary to preserve life shall be provided to an individual

who has neither an end-stage medical condition nor is permanently

unconscious,… 20 Pa.C.S. §5462(c)(1).

If a demand is made by a surrogate decision maker to terminate life sustaining care in a non terminal, conscious and incompetent patient, physicians, as a matter of customary practice, should request immediate review by the ethics committee as well as an experienced clinical bioethicist, followed by written recommendation which should be placed in the patient's chart. This will provide support and protection against liability risk for all physicians on the case, and protect the patient.  Thereafter, if there is any disagreement between the physicians, ethics committee member, bioethicist, or surrogate decision makers, or other family members or close friends, consideration should be given to petition the court for review.

• Email This
• Print
• Comments
• Trackbacks
• Share Link

 

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.

 

• Email This
• Print
• Comments (1)
• Trackbacks
• Share Link

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.”

• Email This
• Print
• Comments
• Trackbacks
• Share Link

 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.

• Email This
• Print
• Comments
• Trackbacks
• Share Link

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

• Email This
• Print
• Comments
• Trackbacks
• Share Link

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.

• Email This
• Print
• Comments (3)
• Trackbacks
• Share Link

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.    

• Email This
• Print
• Comments (1)
• Trackbacks
• Share Link

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.

• Email This
• Print
• Comments
• Trackbacks
• Share Link

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. 

• Email This
• Print
• Comments
• Trackbacks
• Share Link

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

• Email This
• Print
• Comments
• Trackbacks
• Share Link

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.

• Email This
• Print
• Comments
• Trackbacks
• Share Link

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

• Email This
• Print
• Comments
• Trackbacks
• Share Link

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.

• Email This
• Print
• Comments (1)
• Trackbacks
• Share Link

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.

• Email This
• Print
• Comments (1)
• Trackbacks
• Share Link

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.

 

• Email This
• Print
• Comments
• Trackbacks
• Share Link

The Vatican and the 2004 President’s Council On Bioethics establishes a second class group of persons who they deem less worthy of dignity and respect.

On September 8, 2008, the Vatican issued a new statement on bioethics entitled “Dignitas Personae on certain bioethical questions.”  The Vatican’s paper updates church doctrine regarding the ethics and morality of individuals and the duties and authority of physicians in using in-vitro fertilization (IVF).  The Vatican has always demanded absolute and unconditional recognition of the respect and dignity owed to all persons from the time of conception.  This does not apply to persons conceived by IVF, who from the time of conception are relegated to a lesser class of personhood.

The Vatican identifies people born through IVF as not entitled to the same respect and dignity as owed to persons conceived without the interference of medical technology that requires any extracorporeal processes. The premise of the church is children be conceived “by the fruit of the conjugal act specific to the love between spouses.” If not so conceived, the person “… must be given a moral evaluation in reference to the dignity of the human person.”

In 2004, the President’s Council on Bioethics expressed an analogous point of view.

  The Council states that a child’s “being” is determined by in-utero sexual conception, without which the child is without an “identity.” This, the Council argues, is because the “character and significance of human procreation … all of the child’s being and identity, it owes to a continuous developmental process that begins with the union of egg and sperm and continues through an unbroken sequence of embryonic and fetal stages and active within the womb of the mother.”  The scientific basis for the Council’s position is that:

“… through the genetic recombination produced by the lottery of sexual reproduction, genetic novelty is assured, allowing for the gradual evolutionary emergence of new biological capacities and possibilities.  Humanly speaking, because these deep biological facts are lifted into human self-consciousness, procreation commonly establishes ties of belonging, rooted in begetting ritually significant for parents, children, and the larger society.”

It is these “ties of belonging, rooted in begetting” that the Council argues, that are the genesis of human worth and a basis to gauge the dignity and human rights to be afforded to such a person. So, the child lacks (does not lose), per the Councils reasoning, from the time of conception, an identity. Genetically we could see it as an agenesis of identity and dignity – and as a result, never belonging to the human community.   The distinction, therefore, is that a child born through normal sexual in utero conception is a child that is “created” while the IVF conceived child is “made.”

The concept of personhood has been struggled with for centuries. For Plato, personhood was the essence of the soul. Later, personhood was discussed in terms of Natural Law and the reflection of a truly unique identity, divinely created individual. Thus, the question: are IVF conceived persons, in the eyes of the Vatican, divinely created? If not, we can surmise from the Vatican’s statements that the unconditional respect and dignity enjoyed by all human beings in the eyes of the Church from the time of conception are not applicable to the IVF conceived child.

Under the Doctrine of Faith, the Vatican makes clear that a physician is not permitted to participate in IVF and interfere with the natural sexual procreation:

“… all techniques for heterologous artificial fertilization as well as those techniques of homologous artificial fertilization which substitute for the conjugal act, are to be excluded.  …, the doctor is at the service of persons and the human procreation.  He does not have the authority to dispose of them or to decide their fate.”

So, in order to accommodate the Vatican’s viewpoint, physicians must cease to perform or participate in IVF, and perhaps refuse to discuss the reproductive options available with their patients.  Following this argument further, physicians of would-be parents would have a moral obligation to refrain from using IVF, both for the sake of would-be parents as well as for the overall good of the community. Should physicians shun or care for IVF conceived persons?

It is of great concern that the Council, a pseudo-governmental organization, would stratify the moral and ethical standing of citizens. The Council’s position seeks to supersede procreative liberty and medical decision making with governmental definition of the qualifications to be human. This is antithetical to principles of a democratic society and to the health, welfare and unbiased treatment of persons born with the assistance of IVF.  

It is reported that there are more than 3 million people conceived with IVF. So, what becomes of these persons without a sense of being or identity? How can one be a moral agent in a community where human origins are graded? Are they to view themselves as neutered in someway because of their noncoital beginnings? Should they be reluctant to pass on to their progeny a genetic makeup that has no true identity? Should persons conceived with IVF be seen as lacking ensoulment? The pronouncements of the Vatican and the Council target all persons born with IVF assistance as well as their progeny-forever.  

In-vitro fertilization
Artificial Reproductive Technology
Dignitas Personae On Certain Bioethical Questions
Dignity
Morality
State Paternalism
Religion and medical decision making
Physicians as moral agents

 

• Email This
• Print
• Comments
• Trackbacks
• Share Link

Being right does not make a decision morally correct.

The patient, a 98 year old man was suffering from a dissecting aortic aneurysm of 7.5 cm. He was unresponsive and near death. He previously, and with unquestioned capacity, executed an advance health directive indicating that he refused surgery. He also had previously told his physician that he would rather die than to face the probable mental and physical damage and quality of life deterioration that would accompany such damage. 

Without question, principles of clinical bioethics would demand respect for the patient’s wishes and directives. In this instance, the patient’s spouse nevertheless demanded that surgery be performed. All other family members agreed with the decision to go forward with the surgery, notwithstanding the significant risk.

The hospital’s anesthesiologists initially refused to participate in the surgery, stating that such an operation had never been performed on someone his age and in his condition, and also noted that patient had refused the surgery.

Nevertheless, the patient's clearly stated wishes and health care directives were ignored, disregarded and disrespected. Strong paternalism replaced the patient’s dignity and autonomy.

The surgeons proceeded despite the dangers, because, they said:  “We were doing what we thought was right.”

Was it Right?

1.    The patient’s written “advanced” health directive declined resuscitation and, specifically, surgery for what he knew and understood to be a dissecting aortic aneurysm.

2.    The patient’s verbal instructions were to not do the surgery. The patient clearly knew the risks of the surgery. He knew of the high risk of respiratory failure, renal failure and brain damage.  He declined to undertake these risks and refused treatment.

3.    The ethics committee under pressure from the patient’s spouse, acquiesced, but without any stated basis for their decision. Texas law requires a statement.

This case is a clear example of the failure to follow principles of clinical bioethics – a return to strong paternalism – and the disregard for a patient’s wishes.

This case was reported in the New York Times. The patient was Dr Michael DeBakey, internationally renowned surgical pioneer, who died on July 11, 2008, two months shy of his 100th birthday.

Should the fact that he was an internationally renowned surgical pioneer matter in deciding whether to ignore his instructions?  If anything, it underscores his knowledge of the risks of such surgery.
His wife and family demanded the surgery be performed. 

Should we ignore a patient’s clear instructions because he was in some way seen as  “more deserving” of the surgery?

Or should we. as a matter of respect for this man, carry out his wishes?

The outcome of the surgery should not matter to our adherence to bioethical principles. It might however, matter to other patients and families to know that he survived for one year with good quality of life. It may serve as a fictitious beacon of hope and result in unnecessary suffering.

Ignoring the legal obligations and bioethical mandate to follow the autonomous decisions of the patient  may  cause unnecessary problems between surrogate decision makers and physicians and hospitals.

It may also result in claims of civil liability for the unnecessary and prolonged suffering and costs of medical care – the same risks the patient did not want to undertake.

Dr. DeBakey had the “fundamental right,” no different than his right of freedom of speech or his freedom of religion, to determine what treatment he would choose to receive or reject. By issuing a written health directive, and repeating that directive to his physician, he also chose to exercise his fundamental right to receive or reject surgery.

His directive was not inconsistent with customary practice in the medical community.  So, what was the motivation behind his physicians’ and his wife’s  demand that the ethics committee, support going forward with surgery without the patient’s consent?

The patient’s physicians enjoyed a long professional and personal relationship with Dr. DeBakey. They wanted him to receive the benefit of the surgery that he had pioneered and which benefited so many patients across the country. Indeed, it does seem a great injustice for him not to receive that benefit.

Yet, his physicians’ decisions did not honor him. We do not honor someone by ignoring his or her clearly stated wishes.

Yes, Dr DeBakey was happy to be alive and functioning well after the surgery and meticulous care.  His physicians I am sure, celebrated their success.

Yet, it is important to ask, if presented with a similar medical dilemma, with the same array of risks and benefits, would Dr. DeBakey have elected to go forward with the surgery?  I think not. He didn’t like the odds the first time and would not want to take that bet a second time any more than he did the first.
Dr. DeBakey’s physicians chose to take that bet on his behalf even though he clearly refused to do so. They felt that their assessment was better and more important than his. They took the risk with his life and they won that bet for him.

Failure of the Ethics Committee

The larger failure here lies with the Ethics Committee of Methodist Hospital System. Their duty was to inform this patient’s physicians and other interested parties, of the bioethical issues that were presented by this dilemma, and to explain their thoughtful application of these principles. They should have, and were obligated to have, provided a written recommendation and their reasoning and justification for supporting or not supporting the proposed surgery.

In fact, Texas law requires that a report must be issued. The law also requires that the report be made a part of the patient’s record. Thus, the Ethics Committee report should have been made part of the Dr DeBakey’s medical record:
Texas Health & Safety Code, Chapter 166. Advance Directives

    § 166.046.  PROCEDURE IF NOT EFFECTUATING A DIRECTIVE OR
TREATMENT DECISION. (a) If an attending physician refuses to honor a patient's advance directive... the physician's refusal shall be reviewed by an ethics or medical committee.  (c) The written explanation must be included in the patient's medical record.

Instead, no written report was issued. According the New York Times report:

“The majority ruled in a consensus without a formal vote. No minutes were kept.”

The Ethics Committee ran from their responsibilities and kept their meeting and determinations and discussions secret. There was no formal vote. No minutes were kept, and so, in essence, the Ethics Committee never, officially, met.  There was no transparency to this momentous, life and death, decision.  

The Ethics Committee at Methodist Hospital System acted with cowardice, which is defined as failing to act in the face of great difficulty and opposition. Instead, all of the ethical issues and principles, the hours spent in comprehensive educational studies, and years of experience by the members of the committee, were worthless. Instead of fulfilling their role, the Committee silently acquiesced, and the reason for having a medical Ethics Committee in the first place, was thwarted.

We must keep in mind that ethics committees are not intended to be a substitute for the best judgment of a physician. The opinions of physicians are not subjugated to ethics committees.

The Hospital Ethics Committee’s role is to inform the decision making process by providing an intelligent and well thought out review of the bioethical issues and applicable ethical principals and legal mandates that must be taken into consideration. Instead, the Ethics Committee of Methodist Hospital System backed away from the task.  They could not ethically or legally justify ignoring the patient’s clearly stated directives. Dr DeBakey’s wife insisted, and his physicians wanted, that surgery should be performed.

This case is an illustration of conflict of interest, family confusion and anger and the need for forthright and consistent application of clinical bioethics experience for the benefit of all patients.

Dr. DeBakey had the “fundamental right,” no different than his right of freedom of speech or his freedom of religion, to determine what treatment he would choose to receive or reject. By issuing a written health directive, and repeating that directive to his physician, he also chose to exercise his fundamental right to receive or reject surgery.

• Email This
• Print
• Comments (2)
• Trackbacks
• Share Link

    The salient ethical and moral principle applicable to physicians’ responsibilities in following a patient’s rejection of artificial life sustaining treatment is the transparency of the conduct of all physicians, medical staff and fundamental understanding by the family and or friends as to what is being done and how it is being done.

    It must be kept in mind that the distinguishing factor between terminal withdrawal or withholding of artificial life sustaining treatment and euthanasia is the patient’s rejection of treatment, either directly or through a properly informed surrogate, of artificial life sustaining treatment. Unambiguous documentation must set forth all discussion between the patient or surrogate, and physicians, nurses, bioethicists, social services and family members.

    It must be clear that no physician or medical staff  is “assisting” in the ending the patient’s life, but  rather following the patient's  decision. 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 and intelligently understood. The withdrawal or withholding of artificial life sustaining treatment  requires the highest level of inquiry and caution.

    Terminal withdrawal or withholding of artificial life sustaining treatment should only be carried out after a collective decision-making process. It should be discussed by a multidisciplinary group including:  Primary Treating Physician, consulting physicians, Bioethisist; Social Worker, Nursing Director of Critical Care; and Nurses involved in the patient’s care.

    If possible, a 24-hour period should pass from the time of the decision to the time of actual terminal withdrawal or withholding of artificial life sustaining treatment. If a surrogate has made the decision, the surrogate must review, understand and sign a form requesting a withdrawal and withholding of treatment.

    It is the primary obligation of a patient’s primary treating physician to assure full communication and documentation. The primary treating physician may delegate this duty to the consultant primarily responsible for the care of the patient.

• Email This
• Print
• Comments
• Trackbacks
• Share Link

    Many patients facing illness or disease that places their lives at risk do not generally ask why their life is at an end. Instead they often ask, “Why did I live at all?”  “What difference did my life make? It is remarkable how disempowered one feels when seriously ill. Dr Paulina Taboada, describes it:

     “Indeed, perhaps the most devastating aspect of despair is the inability to find meaning.” 

    When we become weak, confused and exhausted we often enter into a void where our thoughts and decisions are distanced from us. As football coach Vince Lombardi said, "Fatigue makes cowards of us all." Many find it easy to say: “whatever you think is best” to their doctor. And, many physicians are accustomed to hearing that.  Suggestions or directives from physicians carry great deal of weight for both the patient and family. But it is not for a physician to take on the dual role of doctor and decision maker.

It may seem easier for a physician to say what her patient “should do,” or state what “she would do” if she were the patient. It may be less awkward and unnerving to merely ask “what does the family want to do?” It may seem easier for a bioethicist to act as a mediator to find a meeting point between doctor and patient or surrogate point of view as to what the patient would want if we could ask her today.  The patient at all times must be the patient – whether competent or incompetent, conscious or unconscious the patient’s wishes are of paramount importance.

Physicians must be mindful of the fact that family members are not their patients, and It is not a physician’s job to please  family and friends.

The Supreme Court of California stated:

A doctor might well believe that an operation or form of treatment is desirable or necessary, but the law does not permit him to substitute his own judgment for that of the patient by any form of artifice …  Our conclusion that the patient's choice must be respected regardless of the doctor's judgment does not denigrate professional standards of care. Rather, it attests to their continuing and critical importance in maximizing the broader precept of self-determination that transcends a particular course of treatment. 

Thor, v. Solono County, SUPREME COURT OF CALIFORNIA
                5 Cal. 4th 725; July 26, 1993, Decided

"If a right exists, it matters not what "motivates" its exercise.  We find nothing in the law to suggest the right to refuse medical treatment may be exercised only if the patient's motives meet someone else's approval."
Bouvia v. The Superior Court (1986) Court of Appeals of California; 179 Cal. App. 3d 112

• Email This
• Print
• Comments
• Trackbacks
• Share Link