End-of-life counseling is intended to enhance the quality of life at one of the most difficult times. Indeed our very best research, such as a recent article in the Journal of the American Medical Association (Bakitas et al., 2009), finds that such counseling is successful in doing just that. End-of-life  counseling is a conversation between a physician or other health professional and a patient and/or the family of the patient, and is intended to address a host of concerns including advance care planning, organ donation and care of the dying and the bereaved. It is not the decision of a government or insurance company bureaucrat. It is not intended and is not used to deny people medical services or to save money.

    Careful examination of end-of-life issues needs to incorporate research, ethical and legal considerations. It is the hope of the Executive Committee and the ADEC Scientific Advisory Committee that the following information will be of use to ADEC members as they participate in professional and personal conversations about end-of-life care.

Research

The existing research literature related to end-of life care indicates the following summary points:

1. Most people are not aware of their options for care at the end of life, therefore counseling is important so that they know their options (Silveira et al., 2000).

2. People’s desires about what kind of care they receive may change over time as they experience illness so that end-of-life counseling needs to be repeated periodically (Ditto et al., 2003; Ditto et al., 2006; Larson & Tobin, 2000)

3. Patients and families who receive end-of-life counseling are highly satisfied with the service (Morss et al., 2008).

4. Terminally ill patients who receive end-of-life counseling have a much higher level quality of life in their final days (Bakitas et al., 2009; Werth, 2005):

5. 5.Although end-of-life counseling has been associated with lower costs for terminally ill people, this lower cost was actually associated with better quality of life at the end of life (Zhang et al., 2009).
   

Ethical

A matter at stake for Americans in this end-of-life counseling issue involves ethics, and three basic principles that inform ethical decision-making are at the heart of the fight over end-of-life counseling: (i) beneficence, (ii) justice, and (iii) autonomy. These ethical principles inform quality medical care.

                Beneficence involves making efforts to promote the welfare of others, in fact, to improve others’ well-being. This ethical principle is embedded in the Hippocratic Oath that enjoins physicians to help or at least to do no harm.

                Justice requires us to treat all persons fairly, equitably, to give each person his/her due. Injustice occurs when persons are denied without good reason benefits that are their due or when an excessive burden is imposed.

                Autonomy is a deeply-held American value among the majority culture, and it is part of the ethical principle of respecting human persons. What this principle means is that adults are capable of making their own decisions. This principle promotes the American values of choice and self-determination. The history, practice, and tradition of palliative medicine and hospice care have been built around these three ethical principles. In particular, the American majority culture strongly endorses autonomy, and the whole idea of end-of-life counseling is to provide persons with the ability to make an informed decision about their care and to keep control over what will happen to them should they ADEC News: Health Care Reform and End-of-Life Decision-Making – A Statement from ADEC be incapacitated. Rather than take away their independence, the point of end-of-life counseling is to promote persons’ autonomy and respect for their own (and their loved ones’) decisions.

Legal

State legislatures have passed laws, reinforced by court decisions that permit advance directives in the form of living wills, durable power of attorney or both. The U.S. Supreme Court has made it clear that a person may refuse medical treatment, including life-sustaining treatment. These statutes and court decisions very clearly indicate that a person may choose not to have a living will or to designate a power of attorney, but also that a person can decide to select palliative care rather than, or in addition to, aggressive treatment.

Federal law provides examples in at least two major cases: (i) the Patient Self-Determination Act passed in 1991 following the Nancy Cruzan case; (ii) Medicare provisions allowing reimbursement for end-of-life counseling signed into law by George Bush in 2008.

Research has demonstrated the value of end of life counseling in providing education that leads to improved care outcomes for patients and families faced with life-limiting conditions. As health professionals we must be guided by ethical principles that support the need for end-of-life counseling; to do less would be unethical. Both case law and legislation support the increased provision of end-of-life counseling. Current inaccurate fears about providing this necessary component to our health care system are unwarranted and should be dispelled.

Bakitas, M., Lyons, K. D., Hegel, M. T., Balan, S., et. al. (2009). Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: The Project ENABLE II randomized controlled trial. JAMA: Journal of the American Medical Association, 302(7), 741-749.

Ditto, P. H., Smucker, W. D., Danks, J. H., Jacobson, J. A. (2003). Stability of older adults' preferences for life-sustaining medical treatment. Health Psychology, 22, 605-615.

Ditto, P. H., Jacobson, J. A., Smucker, W. D., Danks, J. H., & Fagerlin, A. (2009). Context changes choices: A prospective study of the effects of hospitalization on life-sustaining treatment preferences. Medical Decision Medical Decision Making, 26, 313-322.

Larson, D. G. & Tobin, D. R. (2000). End-of-life conversations: Evolving practice and theory. JAMA: Journal of the American Medical Association, 284(12), 1573-1578.

Morss, S., Shugarman, L. R., Lorenz, K. A., Mularski, R. A., & Lynn, J. (2008). A systematic review of

satisfaction with care at the end of life. Journal of the American Geriatrics Society, 56, 124-129.

Werth, J. L. (2005). Becky’s legacy: Personal and professional reflections on loss and hope. Death Studies, 29, 687-736.

Zhang, B., Wright, A. A., Huskamp, H. A., Nilsson, M. E., et. al. (2009). Health care costs in the last week of life: associations with end-of-life conversations. Archives Of Internal Medicine, 169 (5),480-488.