Death: The Final Frontier
Helping People Die the Way They Want To. A good death - what does it mean? When I discuss this topic with some people, they cringe. It can be offensive for many to even think about death, let alone be led into a conversation about how they would envision dying if they had control of the event. For health care veterans, this topic is less daunting. Those who have witnessed deaths with angst; deaths with no finality or closure for patients and families know it can evoke a feeling of anger, and ambiguity. And even in the best-case scenario (is there one?); when all team members do their part-and we are empathic and using one another to communicate and provide the very best that life can accept upon ending-such feelings of sadness, anger, ambiguity are what we almost always expect when someone's life has ended. And so the subject of the blog today is "a good death." How can we as individuals and/or health care providers, therapists, parents, children, siblings-mostly as people (in and out of our "provider" roles), create the means for a worthy ending; one that can hold a moment of meaning for others and for ourselves. None of us will escape the finality of life. How can we do it well? I will start with some thoughts ... because last week, as seems to happen whenever-I am away from the hospital (rarely!). When paged by a favorite director, who has never paged me ... to find that a patient whom I truly adore, and one whom I have had much meaningful music with, was suddenly in the ICU, nearing the end of his life-I felt, what I often feel - "How can I possibly make this meaningful ..."
In the end, I was not there. I was away-but I did do all I could do. I think that is step one as a provider, to realize how human I am, and furthermore that I am not omnipotent, but that what I offer may or may not have the capacity to be offered by someone else on my team, if they are available. I think learning about how patients who are seriously ill envision their ending is critical. I have found that many folks would be eager to share this, if someone would ask. With the asking comes no assumptions. I think we sometimes assume people want family nearby, but this is not always the case. I have witnessed the preference of several patients, who wanted to die alone, and it was not because they were seeking to protect their family. I have found ritual to be a meaningful part of a good death: memory boxes, films, songs, letters ... are valued experiences for patients who are dying. For family and for staff the "post" death time is very important. If I arrive after a patient has died, even if the patient has been removed from their room, I find it helpful to take some moments and pray - or breathe in the room where the spirit has recently transitioned.
I might welcome the family back into the room, or another place (if it is too painfully fresh) and share some music of meaning, or meditative music, depending on the circumstance. Readings, prayers, music and/or particular songs can assist in the sudden loss.
I am curious to learn about how people envision their own death - and/or the best and worst lessons on the topic of final moments.
Following the progression of feelings, I am also reminded that this choice is my choice, and certainly may not be the choice of a patient, family member or staff I may be working with. I am called to remember that each person has his/her own tolerance level with which to meet the experiences he/she encounters, including death. And while sharing in this time of transition with families holds a sacredness for me, for others there may be repulsion of death, or anger, or acceptance, or honor, or confusion and shock, and so on.
Perhaps the fear of the unknown that permiates discussions about considering one's individual death also arises when asked to consider another's death. Not for how it brings us again in touch with our feelings of anticipation of our own death, which of course it does, but for the sense of unknown territory we enter with these patients and families as we ask ourselves what this means for them. This, for me, is the heart of 'a good death'.
So thank you, Joanne, for bringing this topic to the forefront of my awareness once more, that I might remind myself once again that not only do I not have the answers, but that supporting a sense of confort and safety in the unknown can be both healing for myself and beneficial for those I work with facing end-of-life issues.
Years ago as a teenager, I was present after the passing of my grandfather. We, the family, were on our way to be at his side. In the end no family was present while he died. We were told that he had asked his nurse if the family had been called an she told him that we were on our way. I guess within minutes of hearing that, he died peacefully with his nurse holding his hand.
When we arrived we went to see him and each person was able to say goodbye. I can't remember who suggested it but someone did. Taking those few precious minutes to say goodbye has forever changed the way I view death.
As a student, intern, professional and now hospice volunteer, I have had the opportunity to visit and work with people at the end of life. I support what Joanne says about taking time.
As a therapist take some time for yourself... and then offer a grounded therapeutic space for the family to provide a space for to say goodbye. This is a lot more difficult than it sounds so be careful not to attempt too much and gauge yourself first.
As a family member you may make a huge difference by supporting yourself and your family in taking some time.
I think suggesting creating that space either as a family member or therapist is hard in part because inviting people opens up the opportunity for a "no" response and rejection. 'No' is fine though because at the very least you have offered. Some may even take you up on your offer to provide a place and time to grieve/say goodbye. Regardless of the outcome, the offer/invitation of a few precious moments within a family or community makes a difference.
The other assignment we had was to write our own death scene and our own obituary. I don't recall the obituary, but I do recall the death scene, and it involved having spent a lot of time with the people I loved, making music, and dying in my sleep. I think, at the time, I was even selfish enough (since it was MY darned death scene) to want all of the people in my life to die at the same time as me. :-)
I loved the class, because, for me it felt more like a lesson in living than a lesson in dying. I read a book "On Children and Death" (Kubler-Ross) which, while very sad at parts, was also quite life-affirming.
I recently wrote in my blog about having a client die unexpectedly (and, as it happens, I'm concerned that another of my clients may also die after emergency surgery). Most of the folks I work with are not in a hospital for medical reasons, so we don't usually talk a lot about death, but we certainly talk a lot about loss.
Hmm, much to think about. Thanks, Joanne!
~Roia