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

 

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

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

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

David was diagnosed as having aspiration pneumonia and was put on a mechanical ventilator. His parents argued that putting him on the ventilator was not in his best interest and requested terminal extubation. The hospital refused. After several weeks his condition improved and he was weaned from the event.

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

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

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

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

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

The trial court determined that there was no clear and convincing evidence to justify terminal extubation. Although life threatening, aspiration pneumonia is not considered a permanent medical condition.

The hospital argued that life preserving medical care must be provided and, no consent from a third party is required. Nor must any objection by a guardian or surrogate decision maker be honored.

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

Moreover, the court noted that in this instance David never had the ability to appoint a surrogate decision-maker in situations where he did not suffer from an end-stage condition or permanent unconsciousness.

We must appreciate that even if the patient is conscious and of normal intellectual abilities that a request to withhold life sustaining treatment in a patient with a non terminal condition, there still must be a showing of clear and convincing evidence that the patient has the capacity to make such a decision.

If the patient’s condition is improving, then before acquiescing to a demand to withdraw or withhold life-sustaining treatment, there must be some due diligence effort by physicians and ethics committees that the patient has capacity, by clear and convincing evidence, to make such a decision.

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

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

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

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

 

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New Reform Medical Center

Serving your Community since 2010

Agreement and Release

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

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

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

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

Your ability to contribute to the community in the future;

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

Other factors unique to you, personally.

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

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

Ezekiel Emanuel, M.D.

National Chief of Medical Reform

Dated:                                                                        _______________________________

                                                                                  Patient/Power of Attorney/Surrogate

Approved by the US Government and Consensus Entities

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

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

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

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Transparency:

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

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

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

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

Protocol:

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

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

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

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

Notification of Death

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

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

Bernard W Freedman, Bioethicist

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

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

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

Severance Hospital President Park Chang-il said:

   

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Medical Confidentiality:

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

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

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

Judge Rodenberg responded:

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

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

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

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

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

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

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



Bernard W. Freedman, JD, MPH


 

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HEALTH AND SAFETY CODE CHAPTER 166.039.

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

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

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

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

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

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

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

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

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

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

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

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Advance Health Directive:

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

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

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

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

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

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

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

Comments:

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

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

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

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

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

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


 

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

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

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

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

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

 

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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.

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

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

    It must be clear that no physician or medical staff  is “assisting” in the ending the patient’s life, but  rather following the patient's  decision. Only by being forthright about these factors can real transparency exist.

     It is the fundamental right of all patients to reject medical treatment after all risks have been explained and all options presented and intelligently understood. The withdrawal or withholding of artificial life sustaining treatment  requires the highest level of inquiry and caution.

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

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

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

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A person may lack capacity to decide certain things and have capacity to do others. A person may be lack the capacity to decide sophisticated financial affairs, but have the capacity  to make medical decisions for themselves.

The magnitude of the risk involved and the medical intervention contemplated is central to assessments of capacity. A decision to install a PICC line has a different level of risk than extubating (withdrawal of care) in a patient who clearly requires assistance in breathing. So, we can accept a  consent to a PICC line but not  necessarily to extubate.

Levels of capacity vary overtime. A person may lack capacity, e.g., due to levels of sedation or the effect of sepsis on cognitive function. We should then determine if we can wait for the patient to recover to a satisfactory level of capacity to make a decision for herself.


A person who signs an advance health directive five years earlier does not mean that we are restricted from asking what they want to do in a specific situation, presently. An Advanced Health Directive is made in anticipation of a time when decisions cannot be made. Yet, a person may make medical decision at anytime so long as they have the capacity to do so, and therefore should not be made to feel that they must adhere to earlier directives. A patient’s understanding and ability to reason with respect to medical decisions may in fact increase overtime as the patient’s comprehension and experience of their medical condition improves.

In short, a patient must be able to understand, deliberate, and communicate their choice. The first question is what approach should we take to assess this capacity and secondly what gauge can we apply to determine the amount or degree of understanding required to make the specific decision at hand.

There are two subjective standards that need to be evaluated, and are mutually dependent: how, and in what way information is provided; how, and in what way information is understood, deliberated upon and the voluntariness (or undue influence) of the decision.

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