Health Literacy

Help Them Talk: Communicating With Patients and Families About End-of-life Decisions

Article from the Boston Globe’s On Call Magazine, September, 2002

By Helen Osborne, M.Ed., OTR/L
President of Health Literacy Consulting

It is hard to talk about death. Patients and their families, understandably, don’t like to think about making sad and irrevocable decisions. Health providers, too, can feel uncomfortable when they are asked to counsel families facing very difficult choices. But uncomfortable feelings don’t change the fact there are things to be said and choices that should be made.

Americans are more likely to die in healthcare institutions than anywhere else, says Martha Jurchak, RN, PhD, CS. In fact, 80 percent of deaths in the United States occur in hospitals or long-term care facilities. To help ease the stress of communicating about end-of-life decisions, patients, families, and health professionals often request consultation from a hospital’s ethics committee, pastoral care department, palliative care staff, or social work service. As the assistant director of the Ethics Service at the Brigham & Women’s Hospital and Faulkner Hospital in Boston, Jurchak is often asked to respond to this type of request.

Many patients are cognitively impaired at the time of their death, Jurchak points out. They may be unable to understand or respond correctly to a basic question such as, “Do you know where you are?” It may be impossible for them to articulate their thoughts about complex treatment and care decisions. When this is the case, a family member or a healthcare proxy may need to decide such issues as whether to accept or refuse treatment.

For example, Joan has cancer. Although it had been treated successfully for several years, it has now returned and Joan is acutely ill and in an ICU. She is unable to communicate for herself, and so it falls on her family to meet with the health professionals directly responsible for her care and choose from among a range of treatment options, including the choice of only providing comfort measures. The family must weigh the uncertain benefit from unpleasant and painful interventions against the almost certain risk that Joan will die without them. Ultimately, they must make this decision based on Joan’s health history, personal values, and likely quality of life. Although, they may ask the health professionals for guidance, there are no clear right or wrong answers to give. Jurchak, though, says that as a health professional there are things you can do to help patients and their families grapple with these tough end-of-life matters.

Serve as a coach. Although you may not necessarily have the answers, you are certainly likely to be familiar with the situation the family is in and the effects of the choices they face. You can help by listening to the family’s concerns and offering objective information. In cases like Joan’s, for example, you can let the family know what treatments like intubation or dialysis are like. Once the family has this information, they can better weigh the risks and benefits and make a decision that is in Joan’s best interest.

Look for ways to offer time. Most end-of-life decisions can be postponed a few hours, or sometimes even days. Some life-sustaining treatments can be tried on a time-limited basis, such as a 2-week trial of dialysis. At the end of this period, patients and families are likely to have the knowledge they need to make an informed choice about continuing the treatment or stopping it. Even in emergencies, families may have a few hours or even overnight to make decisions that affect life and death. “Families rarely ever need to answer this minute,” Jurchak says.

Be a continuing presence. Patients and families faced with end-of-life decisions are likely anxious, scared, and stressed. Often, they find comfort in the presence of a nurse or other health professional. Once you establish a relationship with patients and families, try to maintain a presence throughout their decision-making process. If you need to leave, such as at the end of your shift, act as a “bridge” and introduce the next nurse to the patient and family members.

Try, also, to be present at discussions when the doctor is talking about treatment options and end-of-life decisions. By hearing firsthand what the doctor has to say, you have a frame of reference you can later use when patients and families ask questions or want more information.

Assess the effect of talking about your own experience before sharing it with the family. If your Uncle Charlie was in a situation similar to Joan’s, it may or may not be helpful to share this experience with her family. Assess who would benefit when you disclose personal information. Some families might be comforted, saying, “Thank you for sharing that information. You’ve made this situation seem so human.” Others may shrink away and respond, “I don’t know why you’re laying that burden on us.” Use your clinical judgment to assess whether the family you are working with would benefit from hearing about your personal experience and generally offer it only when requested.

Provide a human connection. Some patients and families welcome your handshake or hug and others do not. People’s comfort with these gestures may depend, in part, on their culture. However, Jurchak says you should not get caught up in too many intellectual worries about what is prohibited or accepted within a person’s culture. “When someone is very sick,” she says, “sensitivity and genuine human desire to be comforting goes a long way.” It’s important to offer a human connection, while also remaining respectful and attentive to both their needs and values.

Request help from a neutral third party. At times, patients and families may be unable to make well-reasoned and thoughtful end-of-life decisions. Consider asking for consultation from a neutral third party who is experienced in these types of situations. Many healthcare institutions, including the Brigham & Women’s Hospital, encourage patients, families, and clinical staff to request a consult from the Ethics Department. In this consultation, someone from the Ethics Service facilitates a discussion with the patient (if possible), family, and health providers about a range of treatment options that are consistent with the patient’s cultural and religious background, religious beliefs, and personal values.

Help families anticipate end-of-life choices. The Patient Self-Determination Act mandates that hospitals and other healthcare institutions inform and educate patients about advance directives. In Massachusetts, this is the Health Care Proxy — a legal document that allows people to appoint someone to speak on their behalf in medical situations if they cannot do so themselves. Many other states also recognize a Living Will, a legal document that outlines specific instructions about end-of-life decisions. Although it’s almost always uncomfortable talking about end-of-life issues, the best time to do so is before a family is faced with a life-threatening illness or emergency. Let patients and their families know a good time to discuss such matters is when they share a common experience in which someone faces an end-of-life decision. Help them use this experience as a springboard to talk about what they would want in a similar situation.

To Learn More

  • Martha Jurchak, RN, PhD, CS, is the Assistant Director of the Ethics Service at Brigham & Women’s Hospital and Faulkner Hospital. You can reach her by phone at (617) 732-7794.
  • Aging with Dignity, is a Web site that includes a link to a document called “Five Wishes” that can help people plan for care at end of life.

Printed Resources

  • Ferrell, B. et al. Beyond the supreme court decision: nursing perspectives on end of life care. Oncology Nursing Forum. 2000; 27:445-455.
  • Miller, P. et al. End-of-life care in the intensive care unit: a challenge for nurses. American Journal of Critical Care. 2001;10.4, 230-237.
  • Quill, T. Initiating end-of-life discussions with seriously ill patients: addressing the “elephant in the room”. Journal of the American Medical Association. 2000:284: 2502-2507.

Article reprinted with permission from On Call magazine and published by a division of Boston Globe Media.