Doctors Versus Patients: Who Decides Right-to-Life?
In the fall of 2007, eighty-four-year-old Samuel Golubchuk, an Orthodox Jew, was admitted to the ICU unit of Grace Hospital in Winnipeg with pneumonia. Not long after, physicians told Golubchuk’s family that his chances of recovery were nil, and there was no point in maintaining him on a respirator and feeding tube. They advised the family to stop life-support. When the family refused on religious grounds, the doctors insisted that they planned to unhook him anyway.
Their position was supported by a statement of the College of Physicians and Surgeons of Manitoba on “Withholding and Withdrawing Life-Sustaining Treatment,” which declares that “physicians have the authority to make medical decisions to withhold or withdraw life-sustaining treatment from a patient without the consent of the patient or the patient’s family.”
Golubchuk’s family took the case to court. In February 2008, a Manitoba judge ruled in their favor and extended an interim injunction, which prevented doctors from withdrawing care until a full trial could be heard in September. While awaiting trial, three of Mr. Golubchuk’s physicians announced that, ethically, they could no longer justify treating him and withdrew from the case. In June, 2008, after seven and a half months on life-support, Samuel Golubchuk died of natural causes.
The Golubchuk story is not an isolated incident. In a number of noteworthy cases, physicians have succeeded in turning off life-support against the wishes of patients and family.
In Texas, the Advance Directives Act (1999) allows hospitals and physicians, under certain conditions, to unilaterally discontinue life-sustaining treatment they deem to be medically futile against the wishes of a patient or guardian. In March 2005, a Texas case garnered national attention when physicians in a Houston hospital withdrew life-support from six-month-old Sun Hudson, born with a fatal congenital defect—against the wishes of his mother. The infant’s doctors maintained that continuing such treatment would be futile. The Hudson case was precedent setting.
Doctors may decide what constitutes “quality of life” for their patients and deny life-saving treatments to those they feel have no quality of life. Laura Hershey, a national advocate for the rights of the handicapped, in an op-ed (“Handicap Is Not a Death Sentence and Should Not Be Treated as One,” U.S. News & World Report [August 2009]), makes a cogent case against this life-threatening form of discrimination. Hershey, herself a severely handicapped woman who relies on a ventilator for breathing and personal care assistants to bathe, dress, and feed her, writes:
Terrie Lincoln, a disability rights activist, broke her neck 12 years ago in a car accident. Doctors urged her mother to “pull the plug,” because her disability would supposedly deprive Lincoln of independence and pleasure. Sherry Lincoln Sturm refused. Five months later, her daughter was released from rehabilitation. She had a significant disability but was alive and happy. She now has a full-time advocacy job and is earning a master’s degree in social work.
. . . the University of Wisconsin Hospital denied antibiotics to two developmentally disabled people admitted with pneumonia. They needed life-saving treatment, which was withheld, causing the death of one man. The other finally did receive treatment, at the insistence of his family, and survived. . .
These cases and others like them have created shockwaves that reverberate across the religious and bioethical communities. When physicians, in the name of medical futility or quality of life, stop life-sustaining treatments against the wishes of patients or their proxies, they trample on long-standing principles and standards of medicine, bioethics, and halachah. To wit:
In American law and medical practice, an individual who has sustained irreversible cessation of circulatory and respiratory functions, or irreversible cessation of all functions of the entire brain, including the brain stem, is considered dead. Medically, and according to some halachic opinions, the patient is dead once the brain ceases to function and stops regulating breathing; according to other halachic authorities, the patient is still alive until after both the heart and the lungs stop functioning (cardiopulmonary death).
In a number of noteworthy cases, physicians have succeeded in turning off life-support against the wishes of patients and family.
According to any of these definitions, Samuel Golubchuk was alive medically and halachically when his physicians wanted to stop his life-support. Dr. Leon Zacharowicz, a New York neurologist who advised the Golubchuk family, reported in court affidavits that Grace Hospital wanted to cut off life-support based on its claim that Mr. Golubchuk had only limited brain function—even though he had never been evaluated by a neurologist or received such essential diagnostic tests as an EEG or CAT scan. Indeed, at one point, after the court had issued a temporary injunction, Samuel Golubchuk was described as “awake, alert, sitting up in a chair at times, more interactive and shaking hands purposively” (Jonathan Rosenblum, “A Warning from Canada to Those Who Value Life,” [Jewish World Review, July 14, 2008] ).
Physicians who unilaterally make life-and-death medical decisions for their patients violate one of the cardinal principles of contemporary medical ethics—patient autonomy. Patient autonomy is the right of a patient to determine his or her mode of medical treatment or to reject it. Patient autonomy declares that patients with the capacity to make their own decisions may solely determine the course of their medical treatment—not their family, friends, or physicians.
What Drives Physicians’ Treatment Decisions?
A major force driving hospitals and physicians to make end-of-life medical decisions against the wishes of patients and their families is economic: In 2008, according a report on 60 Minutes (“The Cost of Dying: End-Of-Life Care,” November 22, 2009), “Medicare paid $55 billion just for doctor and hospital bills during the last two months of patients’ lives. That is more than the annual budget for the Department of Homeland Security or the Department of Education. And it has been estimated that 20 to 30 percent of these medical expenses had no meaningful impact.” Many physicians and hospitals are understandably reluctant to maintain a patient in a $10,000 a day ICU unit when—in their opinion—his or her chances of returning to any meaningful quality of life are virtually nil.
To be sure, physicians face serious ethical dilemmas in end-of-life care: When patients are end-stage terminally ill and experience poor quality of life, should CPR be initiated when their hearts stop? Should ventilators be attached when they can’t breathe on their own, and feeding tubes be installed when they can no longer eat? Doctors witness the seemingly endless suffering of patients who return to the hospital with repeated infections, critical drug reactions, and decline in mental status, frequently accompanied by persistent pain and depression. But, sadly, too often, physicians are compelled to make their patients’ end of life medical decisions by default—it is estimated that no more than one-third of Americans have advance directives such as living wills or healthcare proxies.
As Orthodox Jews, we have a major stake in preparing our own advance directives; halachah offers us much guidance in medical decision-making. Halachah teaches that every moment of life, every breath, is infinitely precious, and must be preserved—even at the expense of desecrating Shabbat. Yet, at the same time, Jewish law is exquisitely sensitive to the belief that life is not an absolute value: we may not need to initiate or continue aggressive medical interventions when the pain and suffering of a terminal illness makes living unbearable. These medical decisions are truly matters of life and death, which require consultation with a rav who is both an expert in this area of halachah and clinically knowledgeable.
Caution: Hospitals—Use in Emergency Only!
Which choice is more critical–choosing your personal physician or your hospital? Medical experts advise healthcare consumers to select a highly rated area hospital before choosing their primary doctor. According to a major study, one in five deaths that occur in the ICU were misdiagnosed, and correct diagnosis would have resulted in different treatment in approximately half of these cases (“Study Reveals Misdiagnosis in One Out of Five Deaths,” American College of Chest Physicians news release, February 15, 2001). In hospitals today, too many individuals are admitted for routine diagnostic workups or surgical procedures and are then subjected to life-threatening conditions resulting from misdiagnoses, medication and treatment errors, and, perhaps, worst of all, virulent hospital-based infections such as MRSA and C. diff.
Taking Charge of Our Healthcare
Our lives are too precious to allow just anyone to make life-and-death medical decisions on our behalf. With all that’s happening in healthcare today, we need to ask ourselves some hard questions: Who will advocate for us in hospitals? Who will fight for us should physicians attempt to stop life support against our wishes and halachic sensitivities? Who will coordinate and monitor our medical care in hospitals? How do we take charge of our healthcare?
We need to prepare advance directives now (ideally, in consultation with a rabbinic authority in these matters), and appoint a healthcare proxy, while we are still able to do so. Advance directives, which generally include both a living will and the appointment of a healthcare proxy, provide healthcare professionals with critical information about our medical treatment preferences, in the event that we are incapacitated and unable to make our own decisions. Without advance directives, we burden family members with making life-and-death decisions for us—even though they may not be aware of our wishes. Often, when there is no designated healthcare proxy or clear directives, bitter family conflicts ensue over what course of treatment their loved one would have wanted.
To help one prepare advance directives according to halachah, the Rabbinical Council of America has produced a healthcare proxy and guidelines for end-of-life medical decision-making available at www. rabbis.org. Agudath Israel of America offers a different version of a halachic living will, available online at www.jlaw.com, under “halachic forms.”
The OU, through its Department of Community Services, has launched a major campaign to educate the public about the why’s and how’s of making halachic healthcare proxies/living wills. Additionally, in partnership with the New York Legal Assistance Group (NYLAG), the OU offers free online registration of one’s halachic healthcare proxy/living will. The Registry maintains a copy of one’s halachic proxy/living will on a secure web site that can be accessed instantly by any healthcare facility. Registration is vital because in many cases, a patient has to be rushed to the hospital and the family cannot locate the halachic healthcare proxy/living will. The Online Registry ensures that one’s healthcare wishes will be respected. You can get more information about this OU initiative at http://www.ou.org/community_services/pg/C1620.
Halachah teaches that every moment of life, every breath, is infinitely precious, and must be preserved—even at the expense of desecrating Shabbat.
Appointing a healthcare proxy is a critical step in taking charge of your healthcare. But, it is only the first step. Empowering a personal healthcare advocate to monitor your medical care and speak vigorously on your behalf should the need arise may be even more important. In fact, your personal advocate may very well be your healthcare proxy.
Your advocate should be thoroughly familiar with your medical history and your current medications, specifically, which drugs you are taking, their dosage, and why they were prescribed. Most importantly, your advocate needs to closely monitor your medical care at a healthcare facility from admission through discharge. He or she should represent your interests by working closely with your doctors to assure that you receive the best possible care.
Whenever I hear what appear to be legitimate complaints about medical care, I urge family members to speak up. I tell them that by speaking out on behalf of their loved ones, they also give voice to those patients who, unfortunately, don’t have family or friends to advocate for them. I believe it is a mitzvah to advocate as strongly as possible for the best possible healthcare. Pikuach nefesh—saving lives, means we have zero tolerance for substandard medical care. And when it comes to pikuach nefesh, we’ve got to get it right the first time: there may not be another chance!
Giving It Your All
The Torah cautions us to take especially good care of our health: “Only guard yourself and guard your soul me’od, greatly . . . and, in a subsequent verse, “Guard your souls greatly . . .” (Deuteronomy 4: 9; 15). The key word in these verses is me’od, “greatly.” I suggest that in the former verse, me’od should not be translated as “very” or “greatly,” but as it is in the beginning of Shema: “You shall love God with all your heart, and with all your soul, and with all your might [me’odecha].” The Torah teaches us that loving God with all your heart and all your soul is not enough. We must also love Him with all our might, by dedicating all our resources—our unique talents and abilities, our wealth and a healthy body—to His service. God gave us the great gift of life. We must safeguard it with all of our might.
Rabbi Zev Schostak is the Director of Pastoral Care at the Gurwin Jewish Nursing and Rehabilitation Center in Commack, Long Island. He is the chair of Gurwin’s Ethics Panel and served as a Senior Fellow at the Institute for Medicine in Contemporary Society, State University of New York at Stony Brook, where he lectured on bioethics in the medical school. Rabbi Schostak speaks and writes extensively on end-of-life and aging issues in halachah. This article is dedicated in loving memory of Goldie Wrotslavsky of Oak Park, Michigan—Torat chesed al leshonah!