Hospice Ethics Institute Explores End-of-Life Issues

When a person faces a critical illness in a hospital, usually the medical personnel focus on trying to prevent death. In a hospice, patient, family, and care providers accept that death is coming and try to make the experience as dignified, peaceful, and comfortable as possible.

"For a long time, we've assumed that the ethics we've developed in a hospital setting can be brought whole-cloth into hospices, but that isn't the case," said Margaret McLean, director of Biotechnology and Health Care Ethics at the Markkula Center for Applied Ethics.

To tailor a discussion more specifically to the needs of hospice caregivers, the Ethics Center has teamed up with San Jose's Hospice of the Valley (HOV) to offer a Hospice Ethics Institute, July 28­30. Talks, hands-on workshops, case studies, and interdisciplinary conversation will be part of the event.

"Hospices face more and more issues in the gray area that falls into the category of ethical dilemmas," said Jessica Klinghoffer, HOV quality improvement and community education manager. Some of these arise from a difference between how hospices and hospitals offer their services. In a hospital, the emphasis is on the individual patient's autonomy. "In a hospice, the patient and family are the unit of care, which means that several different points of view come into any decision," she continued. "Sometimes those points of view are in conflict."

As an example, Klinghoffer gave a hypothetical case of a daughter who promised her mother that she would never put her in a nursing home. When the promise was made, the plan seemed feasible, but the mother's condition became unmanageable for the daughter. Unable to quit work to care full-time for her mother, the daughter was forced to leave her mother with no caregiver during the day. "In a hospice, we would work with the daughter as she struggles to reconcile her promise to her mother with the danger to her mother's safety if she is left home alone."

Hospices also confront "the whole range of bedside dilemmas that arise in caring for terminal patients: feeding tubes, pain management, total sedation, and assisted death," McLean said. In total sedation, patients are put into a deep sleep so they don't experience agonizing physical symptoms. They are maintained in this deep sleep until they die.

Klinghoffer raises the question: If total sedation is ethical for physical symptoms, should it also be available for psychic pain, for example for patients who suffer because they no longer have any quality of life? Institute participants will discuss this and other dilemmas.

Faculty will include:

From the Samaritan Pain Management Center:
Medical Director Robert Presley, M.D.

From the Ethics Center:
McLean; Center Executive Director Thomas Shanks, S.J.; and Center Scholar Dale Larson, assistant professor in SCU's Division of Counseling, Psychology and Education

From Hospice of the Valley:

Klinghoffer; Executive Director Barbara Noggle, R.N.; Medical Director Ted Cohen, M.D.; and Social Services and Bereavement Coordinator Corrie Marcellino, LCSW.

The cost is $300 and includes all programs, food, and lodging on the Santa Clara University campus. For more information about the institute, contact Klinghoffer at 408-947-1233.

"Are We Living Too Long?" a video featuring Margaret McLean, Ph.D., director of Biotechnology and Health Care Ethics at the Markkula Center for Applied Ethics, won a President's Award in November from the National Hospice Organization (NHO). Produced by Hospice of the Valley, the video records a seminar on ethical decision making at the end of life in which McLean and other ethics experts participated. NHO is a 7,000-member national association devoted to the promotion of hospice care. Its Awards of Excellence Competition honors "highly creative programs that go beyond traditional methods of hospice education," according to the Awards Committee. Hospice of the Valley's video "Are We Living Too Long?" was selected from approximately 100 entries to receive this honor.