Caring for the Terminally Ill
San-Francisco-based Dr. Stan Goldberg was named Hospice Volunteer of the Year in 2009. His new book, Leaning Into Sharp Points is published by New World Library.
Please tell us a bit about the experience of writing this book.
I actually started writing this book eight years before I wrote it. As a bedside hospice volunteer I’ve witnessed and have been a part of the deaths of my patients and the grief of their caregivers. What I saw was that some simple words and actions not only resulted in better deaths, but also reduced the grief of caregivers. They ranged from the simplest, such as sitting next to a terminally ill person when talking to them, to the gut-wrenching permission to allow a loved one to leave. Once I understood the connection between reducing regrets and better outcomes for both loved ones and caregivers, I decided that I was ready to write this book. It contains more than one hundred practical, easy to implement suggestions that caregivers can use.
Is writing therapeutic for you?
No, it isn’t. It’s the culmination of what continues to be therapeutic—my interaction with patients. From my first patient I realized that people who are dying are in the unique position of offering those who are healthy and those of us with a terminal or potentially terminal illness a different way of looking at life. There is an honesty I’ve seen in my patients as they approach death which is unparalleled. They know they don’t have the luxury of minimizing what they feel or diplomatically choosing words. Interactions that have no hidden agendas or are no longer covered with defensive structures produce profound lessons for anyone willing to listen. Now that’s therapeutic.
Your title refers to a Tibetan belief. Do you have experience with the ways people deal with death in other countries that has influenced your work?
What I’ve found is that in most Asian countries with a Buddhist tradition, death is viewed more as a part of living than here in the West. At least, that’s what the literature says should be occurring. Yet, when I was in Taiwan, South Korea, and Japan, I found that the reality of dealing with death in these countries contained many of the same fears and superstitions found here in the States. It seems that death is a cross-cultural, “equal-opportunity” boogeyman. Thinking about dying is not the same as dying.
How can you help someone who is dying preserve his or her dignity?
The answer to the question lies in how we define dignity. I think for someone who doesn’t have much experience with people who are dying, “dignity” is thought of in terms of social “niceties.” By that I mean it’s more of an academic view which includes concepts such as “independence,” “authenticity,” and “maintenance of prior status,” just to name a few. What I’ve found is that, contrary to what dignity should entail, what it involves is allowing patients to define the terms and conditions of their own death, regardless of what we think is appropriate. Dignity has nothing to do with toileting, dependence, or any of the many things we may associate with that term. You can help loved ones preserve their dignity by first listening to what they want to happen and then helping them do it.
Tell us what it means to “give someone permission to die.”
Often, people who are dying will hold onto life despite intense pain. Some may do it because they really do fear death, but I think most—at least in my experience—do it because they believe family and friends aren’t ready for them to leave. Giving a loved one permission to die says, “Thank you for wanting to stay, but I’m ready now for you to leave.” I think it’s the greatest gift someone can give. As caregivers, we are in the unique position of preparing our loved ones for their deaths, simultaneously preparing ourselves for life without them, and doing a trial run for how we want to die. There are few things in life that are so multi-dimensional and fulfilling.