Ignoring an Advanced Health Directive - Why?

Posted on August 4, 2008 by Bernard Freedman

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.

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Should we assist a pateint in facing moral delemmas in end of life care?

Posted on July 13, 2008 by Bernard Freedman
To what degree should a physician and bioethicist go in effectuating the patient’s decisions in end of life care?

The patient 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 then to return home to be with his wife and children, and with the assistance of hospice, die as comfortably as possible. The patient feels that this will be best for him and helpful to his wife and children to go through this process with him. His physicians support this decision.

Before leaving the hospital, however, the patient’s sister flies in from Philadelphia – distraught, angry, and out of control. She cannot accept that her brother is “going to give up.”  She vehemently expresses her disdain for the physician’s and her sister-in-law’s support of her brother’s decision.  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 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.

What if anything should be done at this point to assist this patient in dealing with this dilemma?

Should we meet privately with the patient and emphasize his right to refuse treatment and return home with hospice care, and ask if he wants us to intervene in any way?

Should we attempt, without further discussion with patient, to meet with the patient’s sister, and/or wife and other family members to discuss the patient’s rights and the need to respect his wishes.

Would our approach be influenced by learning that:

1.    The patient’s sister has a history of violence and has been in prison for assaulting and battering other people on numerous occasions?  or,

2.    That the sister is an orthodox Jew whose religion demands that a person must not do anything (including withdrawal of treatment) that may hasten death?


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Failure to Communicate

Posted on June 29, 2008 by Bernard Freedman

Advance Health Directive: Patient has an advanced health directive 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.


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Concerns over the performance of liver transplants at UCLA

Posted on June 17, 2008 by Bernard Freedman

According to the LA Times, four Japanese citizens, otherwise barred from entering the United States for criminal activities, received liver transplants at UCLA. There has been no statement as to whether these patients were on a waiting list, and if so, where they placed. Nor has it been revealed what the etiology of the liver disease was - the major consideration in determining the candidacy for the transplant.

 One of the patients, reportedly a Yakuza Gang Boss, was helped by the FBI to obtain a US visa in the hope that he would provide the FBI with information in return for arranging the surgery . It is unclear if the FBI assisted in facilitating the surgeries. Additionally a donation of $100,000 was made the patient to the UCLA Medical Center Discretionary Fund.

The surgeries were performed between 2000 and 2004, and in each of those years more than 100 patients died awaiting liver transplants in the Los Angeles area, according to the LA Times.

According to UCLA procedures for liver transplant: “… each patient's case will be presented at a weekly meeting of the UCLA Liver Transplant Consultation Team. This group includes specialists from surgery, adult and pediatric hepatology, cardiology, pulmonary, nephrology, hematology, infectious disease, psychiatry, as well as transplant coordinators and social workers. Thereafter, a determination is be made, to ensure the patient's candidacy for transplant.

Long-term survival is significantly affected by the etiology of liver disease. Without an appropriate assessment of the etiology of liver disease a waiting list becomes meaningless. There are clinically significant differences in the mortality risk ratio which are dependent upon a variety of disease processes as well as the age of the patient

Dr. Ronald Busuttil, the surgeon performing the subject liver transplants, reported in a peer review journal that the etiology of disease is determinative of ranges of the mortality risk ratio from 1.00 for PBC  to a mortality risk ratio of 3.50 for malignancy. Patients older than 55 (at least one of the patients was over 60 years of age at the time of surgery) have an increased mortality risk ratio of (RR 1.59) due to age alone.  
  
Questions:
1.    Should  UCLA be asked to disclose to the news media the listing criteria and etiology of disease of these four patients?

2.    Should the UCLA Ethics Committee have been consulted before these surgeries went forward?
 
3.    Should investigations by governmental agencies, be it the FBI or the Department of Home Land Security, be helped by medical centers in allowing informants to be placed at the top of the waiting list for organ transplant?  







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The Need for Transparency when Withholding or Withdrawing Life Sustaining Treatment

Posted on June 12, 2008 by Bernard Freedman
    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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Approaches to issues of futility

Posted on June 9, 2008 by Bernard Freedman
Dealing with issues of futility are extremely difficult for physicians and patients to face and effectively deal with.

The attached power point presentation was used at a continuing medical education lecture by Bernard W. Freedman, JD, MPH, at Good Samaritan Hospital in Los Angeles on October 4, 2006.
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Autonomy: The Patient is the Patient

Posted on June 3, 2008 by Bernard Freedman
    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 points of view.   All of these approaches may ignore or discount the patient's actual wishes.  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 role to please or placate their patient's family and friends.



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Capacity: What do we need know about patients before we can do what they tell us to do?

Posted on June 2, 2006 by Bernard Freedman
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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