Medical ethicist, Daniel Callahan, in commenting on the complicated ethical and religious dilemmas created by rapid technological advancement in medicine said that we have created “longer lives and worse health, longer illnesses and slower deaths, and longer aging and increased dementia (cited in Richter et al., 1995).” Drs. Railey and Childs (1999) contend that “these ‘advances’ have left our patients and their families with many more questions than answers.” Being professionals in long-term care, we know that advance directives may be a partial solution and that there are compelling reasons to incorporate discussions about advance directives into clinical practice, especially before decisional capacity is lost.

As Emanuel (1996) points out advance directives “should be encouraged because they certainly do not cost more [in terms of time spent] and they provide a means for patients to exercise their autonomy.” Johnson, Pfeifer, and McNutt (1995) add that “this discussion as well as the advance directive itself represent the beginning, not the end, of a dialogue.” The more we communicate with our residents/patients and the more educated we become about the topic, the more we will be able to help our residents/patients make well-informed decisions about their care.

The following is a list of recommendations for assisting patients/residents with dementia complete advance directives that was distributed at a workshop co-facilitated by Dr. Paulette Sansone and Dr. Ilan Ledner entitled Advance Directives and Individuals with Dementia: Legal, Practical, and Ethical Issues at the NYCLTCEN’s last conference on June 8, 2000, at Fordham University called Ethical Decisions in Dementia Care: Looking Beyond the Diagnosis.

• Be a strong advocate on behalf of patients/residents completing an advance directive, particularly a Health Care Proxy.

• Treat every patient/resident as a unique individual. Don’t make assumptions or value judgments.

• Approach the patient/resident several times if necessary. Because mental status often fluctuates in dementia patients, try to interview the person when he/she is at his/her best, usually in the morning.

• Try to ascertain whom the patient/resident trusts to make health care decisions on his/her behalf. Ask the question on at least three different occasions for purposes of consistency.

• Determine if the person designated is a reasonable choice.

• Have the Health Care Proxy form signed and witnessed and document its completion in the patient’s/resident’s chart.

• Be sure to inform the person who has been chosen as the health care agent. Encourage and facilitate communication between the patient/resident regarding the patient’s/resident’s wishes about life-sustaining treatment and end-of-life care.

• If the patient/resident seems to understand the implications of the Living Will and DNR, then have him/her complete these documents as well as make a note in the medical chart. If in doubt, involve other members of the health care team when the discussion takes place.

• Be sure treatment options are in compliance with your organization’s/facility’s Mission, policies, and procedures.

• Provide education and training to patients/residents, families, and staff as appropriate regarding dementia, advance directives, end-of-life care, values, and the individual’s right to accept or refuse medical interventions.

• Enlist the support of physicians, as well as other members of the health care team regarding the importance of advance directives.

• Refer any case conflicts to the Ethics Committee, if you have one in your facility/organization. The New York City Long-Term Care Ethics Network is also available for consultation (718-796-2444).

• Be supportive of patients/residents, family members, friends, and staff who may be struggling with these difficult end-of-life decisions.

• If you need additional information, educational materials, and/or legal advice on end-of-life issues contact: Partnership in Caring (formerly known as Choice In Dying) at 1-800-989-9455.

Emanuel, J. E. (1996). Cost savings at the end of life: What do the data show? JAMA, 275, 1907-14.

Johnston, S. C., Pfeifer, M. P., McNutt, R. (1995). The discussion about advance directives. Archives of Internal Medicine, 155, 1025-30.

Richter, K. P., Langel, S., Fawcett, S. B., Paine-Andrews, A., Biehler, L., & Manning, R. (1995). Promoting the use of advance directives. Archives of Family Medicine, 4, 609-15.

Posted on 12/22/00.

RECOMMENDATIONS FOR ASSISTING PATIENTS/RESIDENTS WITH DEMENTIA COMPLETE ADVANCE DIRECTIVES published in Winter edition of the Ethics Network News and is posted on-line at: https://www.angelfire.com/on/NYCLTCethicsnetwork/F2000
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