Medical records:

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

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

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

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

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

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

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

Why Wait

The determination of a patient’s capacity to make decisions is based upon her understanding of her disease or illness and the risks and benefits of treatment. If she is unable to articulate a clear understanding it may be determined that she lacks the necessary capacity to make her own decision and is further taken out of the loop of information and adequate and legitimate updates on her condition. Concomitantly, surrogate decision makers are not always available to see the treating physicians and consults, and often get a cursory explanation of the patient’s condition.

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

67%: Making sure family is not burdened financially by my care
66%: Being comfortable and without pain
61%: Being at peace spiritually
60%: Making sure family is not burdened by tough decisions about my care
60%: Having loved ones around me
58%: Being able to pay for the care I need
57%: Making sure my wishes for medical care are followed
55%: Not feeling alone
44%: Having doctors and nurses who will respect my cultural beliefs and values
36%: Living as long as possible
33%: Being at home
32%: Having a close relationship with my doctor

Why Wait?

As time progresses and severity of illness increases, being able to say what she – the patient - actually wants is of paramount importance. Respecting person’s wishes is both ethically required and legally mandated because we recognize that each of us is owed the respect to decide what is done to our bodies, how we wish to live. These human rights are not relinquished when sever illness must be faced. The need to provide timely information to the patient must not be ignored. If the determination of the true wishes of the patient are, in fact  paramount in decision making than the earlier information is provided then there is a greater probability of knowing – with confidence – the wishes and decisions of the patient. Moreover, be speaking early the patient has the opportunity to ask questions of her physicians that she deems important. All this is lost by waiting. When a patient loses capacity the physicians are forced to turn to the surrogate decision maker who may be reluctant to express the wishes of the patient or unable to face the harsh realities of the situation and delay decisions.

1  A surrogate cannot be permitted to cause a delay in decision making which will harm the patient by causing unnecessary suffering and costly delays.

2  If a surrogate cannot or will not be fully informed and understand the diagnosis and prognosis, he or she may not continue as surrogate

3  If a surrogate cannot or will not decide – find a new surrogate, or move to a best interest standard.

Often the surrogate is a family member suffering from fear and grief, often at odds with the views of other family members and friends. There is an understandable empathy for people in this position and the desire to help them through such a hard time in their lives is great. Yet, it is not the job of a physician or nurse or bioethicist to become involved with the surrogate to the point that the surrogate’s feelings seem more important than the need to uncover by the most reliable means possible under the circumstances to know the true perspective and intentions of the patient.

It must be of crucial importance to maintain focus on the patient’s wishes and not see the surrogate and family as a filter or as an easier method  to arrive at a decision. The surrogate must make a decision, not based on a consensus of the family or the advice of the doctor or nurse, but on the best and clearest representation of the wishes of the patient.

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

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

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

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

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

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

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

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

The FCC adopted rules for Medical Body Area Networks (MBANs), with multiple body-worn sensors “MBAN” that monitor blood glucose, pressure monitoring, electrocardiogram readings, and even neonatal monitoring systems. The monitors can be used in the hospital setting, nursing facilities to identify life-threatening symptoms before they reach critical levels.

Under Part 95 of Medical Device “MedRadio” Service no application will be required to use body area networks

According to a study by the Institute for Healthcare Improvement, a monitored hospital patient has a 48% chance of surviving a cardiac arrest—this number plummets as low as 6% without monitoring.
 

The challenge has been security. FCC chairman Julius Genachowski told a press conference at George Washington University Hospital (GWUH) in Washington, D.C that the move would “represent a multi-industry effort to foster innovation in the spectrum band by allowing distinct but compatible users to share these airwaves.”FCC will permit a wireless electromagnetic spectrum, the 2.36-2.40 gHz band to be used with interference from WiFi transmissions or other wireless consumer devices and , hopefully, significantly reduce the risk of  hacking. 

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

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

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

 Dementia is now a leading cause of death in the United States

A study was published this week in JAMA (Journal of the American Medical Association) regarding nursing home patients with advanced dementia and who have feeding tubes inserted. The results showed that the frequency of feeding tubes is  greater in for-profit hospitals versus government or state owned hospitals. 

"A higher rate of feeding tube insertions also was independently associated with for-profit ownership vs hospitals owned by state or local government...

White residents had the lowest likelihood of feeding tube insertion, while black residents experienced nearly a 2-fold increase in the likelihood of feeding tube insertion...

Written advance directives, do not resuscitate orders,and orders to forgo artificial hydration and nutrition were independently associated with lower likelihood of feeding tube insertion."

Previous studies have found that the survival rate of patients with advanced dementia who have feeding tubes are not improved. It is estimated that one-third of nursing home residents with advanced cognitive impairment have feeding tubes inserted and the majority of these tubes are placed during acute care hospitalizations. Thereafter, many chronically ill patients continue to be maintained on tube feeding in ICUs in the last six months of life.

The use of advance health directives decrease the rate of patients on feeding tubes. Yet, as dementia advances it becomes increasingly difficult to obtain advance orders from patients who have lost the capacity to make decisions for themselves. It is estimated that the prevalence of dementia is 6% to 10% of people over 65, and thereafter continues to increase with age. The number of people aged 65 years and older is expected to increase from 35 million in 2000 to 71 million in 2030. The number of people aged 80 years and older is also expected to more than double,from 9.3 million in 2000 to 19.5 million in 2030.http://www.cdc.gov/pcd/issues/2006/apr/05_0167.htm

Failure to obtain advance health directives grievously impacts the lives of these patients and caregivers as well. 

Early detection of dementia and early intervention to fully inform and ascertain the wishes of patients are therefore of great importance. Such efforts must be translated into public policy.

 A face to face meeting between physician and patient or surrogate, clearly noted in the record, establishing an actual informed consent is the most reliable. This honors the patient's dignity, and also protects physicians and hospitals from claims of wrongful death or physicians assisted suicide.

Further comments by the authors of the study published in the JAMA study are available, at http://www.eurekalert.org/pub_releases/2010-02/bu-sec020810.php

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

A verdict was rendered yesterday (Feb. 2, 2010) in Oregon City Oregon finding Jeffrey and Marci Beagley, Oregon City's Followers of Christ Church, guilty of criminally negligent homicide in the death of their 16-year-old son, Neil. Their son died in June 2008 due to a chronic undiagnosed urinary blockage. Neil became significantly ill about one week before his death due to renal failure. He became weak, could not get out of his bed, and had pain in his abdomen and restricted breathing. Jeffrey and Marci Beagley’s Christian faith called for them to seek healing from the Lord and thus as Neil became worse his parents attempted to heal him with prayer, anointing with oil and laying on of hands. It was uncontested that earlier intervention would have saved his life.

A physician and bioethicist, Dr. Douglas Dickema, testified at trial that it was reasonable for the parents fail to seek medical attention because: "If you don't think your child is dying, you may not bring them to the emergency room." For example, he said: "It may take three days of (a child having) seizures to get them into my emergency room."

Dr. Dickema is the chair of the Committee on Bioethics of the American Academy of Pediatrics. It seems that Dr. Dickema did not testify as a bioethicist but as a physician who represented that he knew what was a reasonable expectation of when a parent should seek medical attention for their child. Legally, however, the standard is what a reasonable parent would do in similar circumstances.

It was often repeated during the trial that Neil himself told his parent that he did not want to go to the doctor. Aside from the fact that he was 16 years old, he did not have the benefit of being informed as to the risks, including death, of refusal of treatment.

A study at the University of California at San Diego from 1975 to 1995 found that of 175 children 140 children died because treatment was withheld based upon religious beliefs.  There was a >90% survival rate of the children who died if treatment had be instituted.

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

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

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

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

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

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

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

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

                                                  Death Panels

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

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

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

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

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

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

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

Questions for bioethicists to consider:

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

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

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

• 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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

• 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

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

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

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

Severance Hospital President Park Chang-il said:

   

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Medical Confidentiality:

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

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

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

Judge Rodenberg responded:

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

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

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

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

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

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

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



Bernard W. Freedman, JD, MPH


 

• Email This
• Print
• Comments
• 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

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

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

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

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

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

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

Ethical issues & Legal requirements:

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

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

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

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

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

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

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

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

 

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

Advance Health Directive:

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

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

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

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

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

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

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

Comments:

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

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

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

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

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

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


 

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

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

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

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

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

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

 

• 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

    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