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

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 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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    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

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