What to do when patients refuse food and water
Is refusal an alternative to assisted suicide?
Can physicians ethically aid terminally ill patients who seek to hasten their death by refusing food and water? Or is such aid a violation of their obligation to act in the patient’s best interests and, in fact, a form of physician-assisted suicide — a practice banned in all but one of the 50 states.
Two authors from the American College of Physicians-American Society of Internal Medicine’s (ACP-ASIM) end-of-life-care consensus panel argue that the use of terminal sedation and permitting voluntary refusal of food and hydration are both ethically sound "last resorts" that allow patients to exercise control over their end-of-life care, without requiring physicians to take part in an act that many of them find unacceptable.
"We felt, as a panel, that it was important to make a distinction between these extraordinary measures of palliative care that are appropriately used when the rest of our palliative care efforts and protocols have not been effective in alleviating the patient’s suffering, and physician-assisted suicide," says Ira R. Byock, MD, a co-author of ACP-ASIM’s recent position paper, "Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids."1 Byock is research professor of philosophy at the University of Montana, director of the university’s palliative care service, and author of the book, Dying Well.
"Our courts have held that people have a right to refuse any treatment that we offer," he continues. "We as clinicians have a responsibility to serve these patients in a manner consistent with their desire and our clinical and ethical standards."
The position paper, written with Timothy E. Quill, MD, of The Genesee Hospital in Rochester, NY, involves a case study of a patient with an incurable brain tumor who asks to only receive treatment directed at relieving symptoms, not treatment to reduce the tumor size or prolong his life. He was prescribed medication directed at relieving pain and preventing seizures.
After developing severe right-sided weakness, seizures, and mental confusion, the patient, known as "BG," began to continually express a desire to hasten his death. The authors report the patient feared becoming a burden to his family and the developing loss of mental capacity more than uncontrolled pain. He decided to refuse all food and fluids and asked that his physicians support his decision.
Although BG’s physician had moral and legal reservations about hastening his death, the physician wanted to be responsive to BG’s wishes and needs.
In response to the patient’s decision to refuse food and water, the physician discussed with him the symptoms he would experience and the methods by which they would be treated. During the last stages of illness, the patient was given morphine to control pain and ice chips to keep his mouth moist and alleviate pain, but no other food or water.
After nine days, the patient could be roused but spent most of his time sleeping. After the 10th day, the patient became confused, agitated, distressed, and incapable of informed consent. However, he had previously given permission to be sedated if this situation arose, the paper’s authors state.
The physician started the patient on a subcutaneous infusion of midazolam, increasing the amount gradually to achieve sedation. The plan of care was to use whatever dose was necessary to control the seizures and agitation. After six hours, BG appeared to be sleeping comfortably. He died at home, 24 hours after terminal sedation was initiated.
More education needed
The physician’s actions in the above case are consistent with the use of standard palliative care measures, although both terminal sedation (the use of high doses of sedatives to relieve extremes of physical distress) and refusal of food and hydration are considered beyond the palliative care procedures normally required, Byock explains.
Physicians need more education about the process of terminal sedation and supporting the voluntary refusal of food and hydration in order to offer the best range of options to patients who are facing unrelieved suffering after all other palliative measures have failed, he says.
"The panel believes that the controversial nature of using sedation in cases of intractable suffering and supporting patients who deliberately refuse food and fluids is out of confusion about what these acts involve," he explains.
Terminal sedation, in fact, is not solely used in end-of-life care. Frequently, patients in trauma, burn, post-surgical, and intensive care units receive this type of sedation temporarily. However, because those patients are expected to recover, careful attention is paid to maintaining adequate ventilation, hydration, and nutrition.
In an end-of-life scenario, in which the patient has no substantial prospect of recovery, the attention to artificial nutrition, hydration, antibiotics, and other life-prolonging interventions is not the same. The purpose of the sedation, Byock notes, is to render the patient unconscious to relieve suffering, not to end the patient’s life.
No food or drink more controversial
Voluntary cessation of eating and drinking is the more controversial topic. When patients choose to stop taking food or water so they will not prolong their lives — and that choice can be distinguished from anorexia and loss of thirst common in the end-stage of a terminal illness — many physicians consider it to be suicide, which they cannot participate in. However, some argue that this decision is part of the patient’s right to refuse life-sustaining therapy.
The physician’s participation in this act is not technically necessary, says Byock. A patient can choose to refuse food and water without the physician’s knowledge, but without the physician’s support, a patient who feels he or she is ready for death must go through an excruciating ordeal.
The panel wants to provide guidance for physicians who may face that situation, so patients will not be abandoned and physicians will not be pushed into compromising their ethical standards.
"I think it is important to note that Tim [Quill] and I are on opposite sides of the physician-assisted suicide debate. He supports it, and I am ardently opposed to it," notes Byock. "However, we were both able to come together and attempt to provide some leadership in this area, because we both agree on what constitutes excellence in palliative care for patients suffering at the end of life."
Byock is careful to emphasize that the instances in which a physician would be confronted with the need for these "extraordinary" measures are rare, and careful precautions to protect the patient are necessary.
First, say Byock and Quill, proper informed consent is the cornerstone of beginning the process of considering these procedures. Also, clinicians should be sure to carefully screen terminally ill patients for clinical depression because the condition is extremely prevalent and difficult to diagnose.
Second, the patient must be experiencing severe suffering that cannot be relieved by other available means, the authors state. "If either option is being considered by clinicians, patients, or families when the suffering person is not imminently dying, assessments should always include second opinions from mental health, ethics, and palliative care specialists."
It is also inappropriate to discuss those "last-resort" options with all patients who have a late-stage terminal illness. "Information about terminal sedation and cessation of eating and drinking becomes important when patients express fears about dying badly or explicitly request a hastened death because of unacceptable suffering," the authors state.
Terminal sedation should be considered only in the most difficult cases," Byock emphasizes. "In some ways, the amount of discussion and struggle that the health care team goes through in making this decision indicates that they are on the right track. It is never a decision that should be easy."
Even though the consensus panel agrees there is a place for such measures, some clinicians and ethicists oppose any physician role in hastening a patient’s death.
"Those of us who have a principle-based ethic feel that this is demeaning the life of the patient, devaluing the patient, and it is also devaluing the importance of the physician’s role in caring for the patient," states Gregory Hamilton, MD, a Portland, OR, psychiatrist and president of Physicians for Compassionate Care, an advocacy group opposed to the legalization of physician-assisted suicide.
The only appropriate use of terminal sedation would be to "interrupt the pain cycle" with the intention of waking the patient at a later time, he says.
Even if the sedation would allow the patient to continue with a previous intention to refuse food and hydration, it would require the doctors to perform outside their role, he says. "If you are doing it with the intention of dehydrating them to death it is just a form of slow euthanasia. It should not be allowed. It doesn’t give the patient control, it gives the doctor control. It relieves the doctor’s dilemma, and we should not allow it."
Patients who ask physicians to help them end their lives are putting the physicians in an untenable position, he contends.
Byock and Quill acknowledge that many ethicists and physicians see any supportive effort to allow a patient to hasten death as aiding a suicide and find such action unacceptable. Physicians should not feel pressured to consider options they do not consider within their scope of care.
"Physicians who oppose their patient’s decision from the outset must decide whether they can provide all forms of indicated palliation," the authors state. "If the physician feels morally unable to do so, transfer of care to another provider should be considered."
Reference
1. Quill TE, Byock IR. Responding to intractable terminal suffering: The role of terminal sedation and voluntary refusal of food and fluids. Ann Intern Med 2000; 132:408-414.
• Ira R. Byock, Palliative Care Service, University of Montana, 341 University Ave., Missoula, MT 59801.
• Gregory Hamilton, Physicians for Compassionate Care, P.O. Box 6042, Portland, OR 97228-6042. Telephone: (503) 533-8154.
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