Sunday night I attended a workshop in Concord delivered by Harvard MA resident and hospice nurse Sue Dobbie. Sue has spent 40 years as a nurse, primarily in home care and hospice, and currently works at Community Health Network in Holliston, MA, which provides nurses to home care and hospice agencies.
Sue led a discussion of the 5 Wishes document, which is published by Aging with Dignity. 5 Wishes helps families plan for terminal illnesses in a sensitive and thoughtful way, to be sure that the person who is dying can have the medical treatment and palliative care that he or she prefers, and that final ceremonies and wills can be arranged in advance, knowing that the person's wishes are being honored.
Sue mentioned how many families avoid discussing these topics, as if denial can delay or avoid the events. Unfortunately, studies show that we all get older anyway, and that denial is not an effective strategy to avoid death. Given that these events are coming, families always experience them more peacefully if they know they are caring for the terminally ill elder (or patient of any age) in the most sensitive manner possible, and according to his or her wishes.
The 5 Wishes asks five simple questions:
- Who do I want as my health care proxy? This person will make health care decisions for you when you can't make them.
- What kinds of medical treatment do I want, in what circumstances? Feelings very about experimental treatments, or treatments that may be painful and have uncertain results.
- How do I want my pain managed? Some people avoid narcotics, especially for example if it reduces their awareness of a remaining days they have. Others prefer to avoid pain to whatever extent possible.
- How do I want to be treated during my final days? If you prefer many people, or few, or none; if you would prefer to be read to from various sources, sacred or otherwise; to hear music or receive massage; to remain very private or to allow family members in during the final process, however long it may last - these and many other questions surface in this discussion.
- What you want your loved ones to know.
Apropos of Sue's comments about denial and families' reluctance to discuss final issues, I observed that the problem starts earlier. Recently on this blog, I had posted, Before Dementia Strikes: Difficult Conversations, Part I, as a guide to helping families begin these needed conversations. While the task may seem unpleasant, it is always easier than having to navigate the final years without being sure how the person you care for would have preferred to be treated. 5 Wishes addresses many of these same issues for the final stage of life. I encourage any families who have not addressed this with their loved ones to set aside time for this valuable process.