Thank you for offering this unique and desperately needed space! There is a need for places in which we can freely discuss issues that seem to be so generally unwelcome, even among friends and family. I'm just off a wonderful conference call (this past Tuesday) with Compassion and Choices staff about tools that are available to those seeking to have some control over their own dying process and been thinking, once again, about raising these issues with others. I would welcome your guidance. One specific question is when and how (if ever) to raise the issue of death with someone with serious, potentially fatal, cancer who does not initially raise the issue with me. In a recent conversation with someone close to me who is undergoing various treatments -- someone who has been understandably wary about the treatments and their escalating intensity -- I've offered to discuss the option of refusing treatment. I've explained only (in response to the question that followed) that I personally am not out to live as long as I can and that I am open to refusing treatment when the time comes. My offer has been received with genuine gratitude and the discussion will be had (if necessary) when and if the time comes. In this instance, and others, I would like to be as useful and compassionate as possible. I recently found myself on the phone supporting someone I didn't really know, who sat (feeling hopeless and at sea) at the bedside of a dying close friend in San Francisco. I could have used some guidance in how best to help that generous soul. Lacking your experience and training, and aware that most people seem to fear death and don't even like talking about it, I'm wary about venturing into this area unless I'm specifically invited to do so. Most people close to me know that I'm a believer in the right to die, but very few of my relatives and friends invite frank, open, fearless, and useful discussion about death. Are you comfortable offering guidelines to an untrained layperson, like me, about when and how one might engage people? Or whether there are resources and people I might send someone who would like to talk but (correctly) sees me as a novice? And whether you can offer some guidelines to people who are seeking to support those who are sitting with the dying? I read your extraordinary book some months ago. It is by far the best resource I've yet seen and extremely helpful, but I am wondering whether someone who lacks your sophistication and experience can be useful - and, if so, how. Thank you for offering this amazing space and for wrestling with my questions.
Joan comments: EP, Thanks for this posting. Your concern for others’ well-being is obvious and praiseworthy. I’m not quite clear as to whether you are asking about discussing death – which comes to us all – or about discussing ways gravely ill people could hasten or cause their deaths. So let me respond to these questions separately.
One: If you are sitting with someone you believe may have a fatal illness, and want to offer them space to talk, if they wish, about their feelings about that possible reality, the first thing to do is remember it is up to them, not you, to talk about this only if they want to. So you want to offer an inviting and accepting space, but never attempt to force the issue.
Begin by going inside yourself and finding a place of peace. If you are tense or anxious or pushing or wanting to “teach” or “instruct,” try another time when you can come from a place of peace.
Once you are in a state of inner peace, you might say something like, “Do you feel like talking about how you’re doing, or would you rather talk about something else?” Listen closely to their reply, and if they choose something else, respect that choice and follow their lead. If they seem eager to talk about how they’re doing, again, respect their choice and follow their lead.
If you listen from a place of inner peace and acceptance, it may happen that they will say something which opens into a conversation about death. Or, it may not happen. If the opening comes, accept it both externally and internally, so that you are not clenching or anxious. Say as little as possible so that they can say what they need to say. Remember, you are not in charge, they are.
Two: If you as a layperson are sitting with someone whom you think might want to shorten their remaining life, this is not an appropriate place for you to enter unless you are explicitly and sincerely asked to comment. This is a place for expert advice, and only when requested. A good palliative care team is comfortable in talking about death and helping patients make difficult choices about treatment. At Peace: Choosing a Good Death After a Long Life by Samuel Harrington, MD is a helpful read for family, friends, some patients, and probably you!
Your desire to help is a gift to the world. As hard as it can be sometimes, see if you can remember to let the dying person set the direction and pace of your interaction. Dying is something none of us can control, no matter how much we yearn to do so. Your loving and supportive presence will always be a blessing.