Medical Futility in End of Life Care: Exploring Ethical, Clinical, and Spiritual Dilemmas
Phylliss M. Chappell, M.D., Director of Palliative Medicine, Memorial Hermann Hospital, Greater Heights
This session will explore the concept of medical futility, as it applies to end of life care, from the historical origins of the concept in the writings of Hippocrates and Plato, to its importance in the contemporary debate. In the late 1960’s there was a dramatic shift toward patient self-determination in medical decision making, largely in response to the paternalism of physicians who were felt to unilaterally over treat patients and prolong their lives against their wishes or the wishes of their surrogate decision makers and families. Patients feared living – and dying - as prisoners of technology. This perception of physician driven overtreatment resulted in a series of legal cases in which the courts consistently gave patients or their appropriate surrogates the right to withhold treatment, even if that treatment was recommended and life sustaining.
By the late 1980s a controversy began to emerge at the opposite end of the spectrum, as a growing medical consensus developed that life sustaining interventions were not appropriate in all patients. Although the initial debate had focused on patient autonomy and a patient’s right to refuse unwanted therapy, a new debate emerged which focused on patients or surrogate decision makers demanding treatments that the health care team regarded as futile or medically inappropriate. The representative case was no longer the dying patient kept alive by the demands of the medical professional, but the dying patient kept alive by the demands of the family or surrogate decision makers.
By the early 1990’s there was an intense debate in the medical and ethics literature regarding the definition and utility of the concept of medical futility. There was generally agreement that if a patient or surrogate desired an intervention that was truly futile, there would be no duty on the part of the health care team to provide the intervention. To translate the concept of futility into operational policies which could deal with the problem of patient driven over treatment required an accepted definition. A major criticism was that the concept of medical futility was too value laden to allow for a workable definition. In a 1994 publication, the Council of Ethical and Judicial Affairs of the American Medical Association concluded that the concept of medical futility could not be meaningfully defined.
In 1996, a consortium of hospitals in Houston, Texas proposed a multi-step procedural approach to futility “based on open and fair processes involving patients, physicians, and institutions,” which would analyze each case individually. This procedural approach to resolving disputes in health care, which requires consultation with an ethics or medical review committee, is the type subsequently endorsed by the American Medical Association, and which has been adopted by many hospitals nationwide. Opponents to this approach to medical futility disputes raise as their first and most important concern, the fact that life and death decision making is placed in the hands of a hospital ethics or medical review committee.
We will review a number of cases which demonstrate the often difficult practical problems that can arise within the context of the concept of medical futility and explore the ways in which clinicians can attempt to prevent intractable medical futility disputes. We will examine the role and responsibility of clinicians, when appropriate, to redirect efforts from life-saving treatments toward the aggressive pursuit of treatments that maximize comfort and dignity for the patient and for the grieving family.
Families faced with the approaching death of a loved one can most often be guided toward comfort centered care, which may include withholding or withdrawing life sustaining measures, using kindness, sensitivity, and carefully structured discussions. Frequent and clear communication with families, with the aid of professional interpreters where appropriate, and with other members of the healthcare team, is of extreme importance in setting the stage for a smooth transition to terminal care. Ideally, a palliative care plan, which includes psychological and spiritual support for patients and their families, should be created as soon as possible after the diagnosis of a life limiting condition is made.
Recommending a clear and consistent path is preferable to enumerating several possible options, which grieving families may find bewildering. Communication should be direct and empathetic. When clinicians feel that there is no hope of meaningful recovery, this needs to be stated explicitly to the patient and family.
In listening empathically, it is often possible to identify the family’s values, their concerns, and their fears, with the goal of honoring their values and, as much as is possible, addressing their concerns. Patients and their families commonly fear abandonment and need to be reassured that their loved one will be cared for and kept comfortable.
Ideally the patient will die in a manner that is consistent with the Institute of Medicine’s definition of a good death: “A decent or good death is one that is free from avoidable distress and suffering for patients, families, and caregivers; in general accord with the patients’ and families’ wishes; and reasonably consistent with clinical, cultural, and ethical standards. A bad death, in turn, is characterized by needless suffering, dishonoring of patient or family wishes or values and a sense among participants or observers that norms of decency have been offended.”
Dr. Edmund Pelligrino, chairperson of the President’s Council on Bioethics wrote, “The common sense notion that a time does come for all of us, when death or disability exceeds our medical powers cannot be denied. This means that some operative way of making a decision when ‘enough is enough’ is necessary. It is a mark of our mortality that we shall die. For each of us some determination of futility by any other name will become a reality.”
This session will explore the concept of medical futility, as it applies to end of life care, from the historical origins of the concept in the writings of Hippocrates and Plato, to its importance in the contemporary debate. In the late 1960’s there was a dramatic shift toward patient self-determination in medical decision making, largely in response to the paternalism of physicians who were felt to unilaterally over treat patients and prolong their lives against their wishes or the wishes of their surrogate decision makers and families. Patients feared living – and dying - as prisoners of technology. This perception of physician driven overtreatment resulted in a series of legal cases in which the courts consistently gave patients or their appropriate surrogates the right to withhold treatment, even if that treatment was recommended and life sustaining.
By the late 1980s a controversy began to emerge at the opposite end of the spectrum, as a growing medical consensus developed that life sustaining interventions were not appropriate in all patients. Although the initial debate had focused on patient autonomy and a patient’s right to refuse unwanted therapy, a new debate emerged which focused on patients or surrogate decision makers demanding treatments that the health care team regarded as futile or medically inappropriate. The representative case was no longer the dying patient kept alive by the demands of the medical professional, but the dying patient kept alive by the demands of the family or surrogate decision makers.
By the early 1990’s there was an intense debate in the medical and ethics literature regarding the definition and utility of the concept of medical futility. There was generally agreement that if a patient or surrogate desired an intervention that was truly futile, there would be no duty on the part of the health care team to provide the intervention. To translate the concept of futility into operational policies which could deal with the problem of patient driven over treatment required an accepted definition. A major criticism was that the concept of medical futility was too value laden to allow for a workable definition. In a 1994 publication, the Council of Ethical and Judicial Affairs of the American Medical Association concluded that the concept of medical futility could not be meaningfully defined.
In 1996, a consortium of hospitals in Houston, Texas proposed a multi-step procedural approach to futility “based on open and fair processes involving patients, physicians, and institutions,” which would analyze each case individually. This procedural approach to resolving disputes in health care, which requires consultation with an ethics or medical review committee, is the type subsequently endorsed by the American Medical Association, and which has been adopted by many hospitals nationwide. Opponents to this approach to medical futility disputes raise as their first and most important concern, the fact that life and death decision making is placed in the hands of a hospital ethics or medical review committee.
We will review a number of cases which demonstrate the often difficult practical problems that can arise within the context of the concept of medical futility and explore the ways in which clinicians can attempt to prevent intractable medical futility disputes. We will examine the role and responsibility of clinicians, when appropriate, to redirect efforts from life-saving treatments toward the aggressive pursuit of treatments that maximize comfort and dignity for the patient and for the grieving family.
Families faced with the approaching death of a loved one can most often be guided toward comfort centered care, which may include withholding or withdrawing life sustaining measures, using kindness, sensitivity, and carefully structured discussions. Frequent and clear communication with families, with the aid of professional interpreters where appropriate, and with other members of the healthcare team, is of extreme importance in setting the stage for a smooth transition to terminal care. Ideally, a palliative care plan, which includes psychological and spiritual support for patients and their families, should be created as soon as possible after the diagnosis of a life limiting condition is made.
Recommending a clear and consistent path is preferable to enumerating several possible options, which grieving families may find bewildering. Communication should be direct and empathetic. When clinicians feel that there is no hope of meaningful recovery, this needs to be stated explicitly to the patient and family.
In listening empathically, it is often possible to identify the family’s values, their concerns, and their fears, with the goal of honoring their values and, as much as is possible, addressing their concerns. Patients and their families commonly fear abandonment and need to be reassured that their loved one will be cared for and kept comfortable.
Ideally the patient will die in a manner that is consistent with the Institute of Medicine’s definition of a good death: “A decent or good death is one that is free from avoidable distress and suffering for patients, families, and caregivers; in general accord with the patients’ and families’ wishes; and reasonably consistent with clinical, cultural, and ethical standards. A bad death, in turn, is characterized by needless suffering, dishonoring of patient or family wishes or values and a sense among participants or observers that norms of decency have been offended.”
Dr. Edmund Pelligrino, chairperson of the President’s Council on Bioethics wrote, “The common sense notion that a time does come for all of us, when death or disability exceeds our medical powers cannot be denied. This means that some operative way of making a decision when ‘enough is enough’ is necessary. It is a mark of our mortality that we shall die. For each of us some determination of futility by any other name will become a reality.”