Hospice of the Comforter

When we or our loved ones are dealing with a life-threatening or serious illness, it is important that we have reliable and accurate information, so we can make realistic plans and maintain as much control over our situation as possible. Unfortunately, relying on our doctor to bring up difficult topics like prognosis and treatment options may not provide the information we need when we are counting on it most.

A recent federally-funded study reported that only one-third of terminally ill cancer patients said that their doctors had discussed end of life care with them. When doctors are asked what prevents them from raising these issues with seriously ill patients, they often explain that they avoid such direct information because they feel they are doing patients a favor by keeping hope alive. In reality, the study showed that patients who had these talks were no more likely to become depressed or hopeless than those who did not. They experienced a higher quality of life during their final weeks as they were less likely to spend their final days in hospitals, hooked up to machines. They avoided costly, futile care, and were likely to receive more and earlier referrals to hospice. Their loved ones, interviewed six months after their death, were more at peace. In contrast, those whose doctors did not discuss end of life care and options incurred much higher costs, usually resulting from life-prolonging interventions, such as mechanical ventilation. The lack of clear communication was also associated with worse quality of life during the patients’ final weeks, and higher levels of depression during the bereavement period of their survivors. In addition, patients typically did not live longer with aggressive intensive care.

Not every person wants specific information on their prognosis, defined by palliative care expert, Dr. Ira Byock, as “a term for the predicted course of a disease. People commonly use the word to refer to an individual’s life expectancy—how long the person is likely to live—however, prognosis can also refer to the chances that a disease can be cured, the outlook for recovery, and prospects for future function.” Dr. Alexi Wright, a medical oncologist at Dana-Farber states that “About 20 percent of patients don’t want to know prognostic information, but if patients have feelings about the kind of care they want, they should bring it up with their physicians. You want to be treated by a physician who you feel really understands and respects your values.”

So what is it important to bring up with your physician when you are dealing with a serious or life-threatening illness? The American Society of Physicians and the American Society of Internal Medicine have jointly produced a brochure that provides guidance for these tough conversations. It suggests that you do some preparation by asking yourself and your family the following questions:

• As you think about your illness, what is the best or worst thing that might happen?
• What are your hopes for the future? What matters most?
• What are your fears? Are you concerned about suffering? Maintaining your dignity? Being a burden to your family?
• What is most difficult for you about this illness?

Make an appointment with your doctor specifically to discuss questions and concerns, when you or he/she will not be distracted by examinations or procedures. If your doctor is reluctant to set up such an appointment, please insist on it. The following categories give examples of the types of concerns and questions that people often bring up:

Questions About Your Care

• What are the options for my care? What usually happens in conditions like mine?
• Will you keep caring for me as long as I live?
• Will I need to go into the hospital or a nursing home? Will you still be my doctor?
• What can hospice provide for me and my family? When is hospice care an option?
• Who should I call when I have questions? Who should I call at night or on weekends?
• How will I get help with insurance questions and medical costs?
• When I’m ready, will you talk with me about how I may die?

Questions About the Quality of Your Life

• Tell your physician about how you and your family are managing.
• Is there anything more that can be done to help me live comfortably?
• Is there help for my family?
• Who can I talk to about emotional, social, spiritual, or other concerns?

Planning for the End of Life

• Will I know when my condition gets worse?
• When treatment stops working, will you tell me (or my family)?
• Will I get all the care I want?
• What is a do-not-resuscitate order? A feeding tube?
• How will decisions be made if I am too sick to speak for myself?
• Do I need a living will or durable power of attorney?
• I want your best advice–but my family and I want to make the final decisions. Will you support us when that time comes?

In a New York Times article written shortly after her mother-in law’s death, Dr. Pauline Chen reports how the open communication with both doctors and family about the reality of her mother-in-law’s condition allowed her most important needs to be attended to fully.

…in the end, the ongoing discussion and interactions with the doctors and nurses about her desires and her dislikes gave my mother-in-law not only comfort but also a sense of still being part of the conversation, part of “the action,” part of life. And those discussions also gave my husband and his sister opportunities. They sat with their mother and read to her. They fed her when she was hungry and put cool towels to her face when she was hot. My sister-in-law even organized one last social event, a “Spring Fling,” for her mother. The children, grandchildren and two great-grandchildren from across the country filled the room with the kind of lively conversation and laughter my mother-in-law had always loved… After all the festivities had come to an end, my husband and sister-in-law left the room to escort everyone out. I saw my mother-in-law look up toward the sky after they left, opening her mouth as if to speak. I walked closer and heard her say softly to herself, “I am so happy.” 

Most of us who are dealing with such issues would benefit from a full and candid discussion of what we or our loved ones are up against and what our options are. From that point we can put away the anxiety and energy drained by “not knowing.”

Accepting the likely reality of a situation does not take away our hope, we can always continue to hope for a return to wellness, but allows us to proactively put into place what is most important for our comfort, care and relationships.