It is the discussion and not the form that matters most.
It is the discussion and not the form that matters most. It is best done over time, with family, and in large group settings. Atul Gawande and his Ariadne Labs have developed a “Serious Illness Conversation Guide” to facilitate the discussion:
- What is your understanding of your current medical condition?
- How much information would you like now about your illness and its probable outcome?
- If your health situation worsens, what are your most important goals?
- What are your biggest fears and worries about the future?
- What abilities are so critical to your life that you can’t imagine living without them?
- If you become sicker, how much are you willing to go through for the possibility of gaining more time?
- How much does your family know about your priorities and wishes?
Our experience suggests that death and dying themes can be introduced in a variety of settings, and the earlier the better: when a parent begins to fail at home; when a friend or neighbor dies suddenly; when a routine screening test reveals worrisome news. At very least, we can acknowledge the emotional toll on our patients and offer them resources to explore (see list).
In my practice, I have found two questions to be most helpful for patients who see “death and dying” as a long way off: Who and what matters most to you? How can the last years of your life further what matters most to you? And have facilitated male support groups for the recently retired and for octogenarians. In a group setting, patients learn that talking helps, and that we all face the same questions and worries. Here are examples of “homework” that I’ve assigned:
- Write a love letter to your children.
- Talk to someone who is dying or seriously ill.
- Go on a spiritual retreat or a pilgrimage to your familial home.
- Volunteer for a job where you are completely anonymous
- Plan a shared experience with those you love.
- Write your own epitaph or obituary.
- Request a family meeting to discuss your end of life priorities.
As you begin, make sure that you explore your own feelings about death and dying. What we have experienced in our own lives– what we saddens or frightens or angers us– often surfaces in our approach to patients. We are in medicine for a reason; know it and embrace it.