13

Choice in Dying, Inc. is a national, not-for-profit organization dedicated to serving the needs of dying patients and their families. The organization pioneered the living will more than 25 years ago and has distributed approximately 10 million living wills since that time. Choice In Dying advocated the right of patients to participate fully in decisions about their medical treatment at the end of life. It is the only organization that deals broadly and practically with end-of-life issues and provides substantial public and professional education, advance directives, and counseling about the preparation and use of these documents.

Each day, Choice In Dying receives hundreds of calls from the public. Many callers simply ask to receive and advance directive form, but others have deeper questions about the legal, ethical and emotional issues raised at the end of life. Often these calls come from patients and families in the midst of difficult end-of-life care decisions. Several years ago, CID began to develop a counseling service to handle these complex inquiries. With the assistance of CID's more experienced staff members and other professionals in the field, a formal procedure for taking case calls was established and CID's counseling line officially was opened.

The following is a sampling of the calls received during the course of a single week. The names of callers and some details of their stories have been altered to protect their privacy.

Monday 10:15 AM

Mrs. J called with questions about her right to make decisions for her 70-year-old brother Kevin. Kevin was never competent; Mrs. J and the rest of her family had always taken care of him. Now Kevin was ill and needed surgery. The doctors explained the risk that Kevin would be bedridden and unable to interact with his environment after surgery. Mrs. J and her family assumed they would be able to decide what type of medical intervention would be best for Kevin at that point.

However, she became concerned that the ethics committee would make decisions about his care without consulting the family that had cared for him throughout his life. In fact, the committee had not invited the family to participate in an earlier ethics committee meeting in which Kevin's case was discussed. CID advised Mrs. J to seek guardianship of her brother so she would have legal standing to make decisions for him. We also suggested she write a letter to the committee to ensure that her concerns about her brothers future would be addressed.

Wednesday 2:30 PM

Mr. Z called from a religious_affiliated hospital that had a policy against honoring a patient's wishes to refuse artificial nutrition and hydration. Mr. Z knew that his 77-year-old father, who had been admitted to the facility, wanted to refuse his treatment. His father had suffered numerous strokes and had made it clear to his family that he would choose to refuse life-sustaining treatments if he could no longer interact with his family. Mr. Z's mother was the appointed health care agent, and both Mr.Z and his mother insisted that the patient be moved to another facility. While CID was attempting to help the family find another facility, Mr. Z's sister called from another state and insisted that a feeding tube be placed in her father. The physician placed the tube without permission from the mother, the appointed health care agent. CID began a search for a facility that would follow the law and listen to the decisions of the health care agent. We also talked with Mr. Z about how he could open a dialogue with his sister in hopes of resolving the disagreement over their father's care.

Thursday 4:00 PM

Ms. P called when her 93-year-old mother was transferred from a nursing home to a hospital because of an infection and overall physical deterioration. Ms. P's mother had progressive dementia and had been in the nursing home for over 10 years. She was bedridden and unable to communicate with her family or caregivers. Ms. P's mother previously had made clear statements that she did not want to receive any life-sustaining medical treatments, and Ms. P. had signed a valid do-not-resuscitate order on her mother's behalf. Despite the existence of this document, the facility told Ms. P that her mother actually had been resuscitated twice within the past few months. When her mother was hospitalized, the physician suggested artificial nutrition and hydration be initiated. Ms. P looked to CID for information about this treatment.

CID helped Ms. P gather the information she needed to ask the right questions. We also helped Ms. P create affidavits that documented prior conversations with her mother about end-of-life treatment decisions. These conversations convinced the hospital that Ms. P's mother would not want treatment.

Friday 1:00 PM

Ms. T called to ask general questions about the laws regarding physician-assisted suicide. After hearing an explanation of the law and the different court cases, Ms. T mentioned that she was investigating the option of physician-assisted suicide for her father who had cancer. She said her father had asked her to help him have a peaceful death if he was suffering. The daughter believed it might be time to consider honoring this request. The CID counselor helped Ms. T explore some of her concerns about her father's condition and also discussed other options that she might have overlooked, such as hospice care in the home and better pain management. In addition, the counselor sent Ms. T a recent CID newsletter that explored the issue of assisted dying.

The Future of the Counseling Line