On the “Good Death” part 2

In my post last week, I wrote about my discomfort with passing judgment on outcomes that can be beyond our control, such as health status and even death.  As Americans (or perhaps just as humans), though, we tend to be judgmental creatures.  I’ve been told by others that I am not particularly judgmental (or was it that I was lacking judgment?  I don’t recall…).  Regardless, I have found myself doing it, judging away.  In hospice we often talk about “good” deaths.  The centenarian who died peacefully surrounded by his family?  A good death.  The almost pathologically independent woman who only required help for the last few hours of her life?  A good death.  I did it last week when describing my paternal grandmother’s death: quiet and peaceful, a good death.

Of course, as I also mentioned last week, when you get into the habit of describing something as “good,” then you are forced to describe other things as not-good; i.e.,  “bad.”  This blog was born of an essay I wrote and circulated to a few close friends and family.  It was basically done as therapy.  I had just been party to several deaths in a row that I felt pretty awful about.  There had been a lot of “denial” (another term I’m not fond of); there were children that had not been well prepared; there had been attempts at heroic medical efforts; death had been found in an ambulance; etc., etc.  I felt that everything that we try to avoid or ameliorate in hospice had occurred, and it had occurred more than once.  And as the social worker to these families I was struggling with what had gone wrong, and what I could or should have done to “fix” it. (“Fixing” things can be a bit of an issue in social work.  I’ll probably write about that some time, too).

So, I wrote all of that out and sent it to a few folks.  I’ll tell you what conclusion I came to next week.  Those were tough deaths, and most of us would be hard pressed to say that they were “good.”  My immediate reaction was that they were the opposite of good.  My feeling was that they were…”bad.”

Were they bad deaths?  Well, perhaps.  My hospice book group recently finished the book Dying Well by the great Ira Byock, MD.   This book is a classic in the field, and I enjoyed it.  Byock is a leading hospice physician, and in the book he shares stories about the patients in the Montana hospice that he started in the 1990’s.  He talks about the idea of “dying well,” which for him means growth and accomplishment during the dying process.  In most of the stories he shared, there is a lot of growth and accomplishment as people head toward death.  They repair relationships, become closer to those they love, grow as people and eventually achieve acceptance of their fate.  The stories are very gratifying.

In his book, Byock talks about how to distill what needs to be accomplished at the end of life.  I thought he had a nice way of eliciting this.  He suggests the following questions:  “If a hurricane came suddenly and you had 15 minutes to live, what would be going through your mind as you lay dying?  What would be left undone?  Is there anything you haven’t done or said to someone important?”  Asking those questions seems like it would go a long way to getting to the heart of the matter, to figuring out what still needs to be done.

Our little hospice book group was somewhat floored by how intimately involved Byock seemed to be with his patients and their families.  His hospice at the time sounds like it was a small one, and it appears that he was quite embedded in those homes.  We have a mid-size hospice, with several MD’s, and while the rest of the team (nurse, social worker, chaplain) might become very involved, it is rare for us to see the MD have that level of involvement.

What actually struck me more than that, however, was how much guidance he provided to these families in terms of how they could (should?) “die well.”  He seems to  have had very strong  ideas of what a good death looked like, and what his patients needed to do to accomplish that.  For starters, relationships needed to be completed, and could be done so by saying “I forgive you”, “Forgive me,” “Thank you” “I love you,” and “Goodbye.”

There doesn’t really seem to be much wrong with that formula, but for me personally, I would be hesitant to insist that people follow it.  He recounted one story where he forced an uninvolved son to tell his dying mother that he loved her.  To a very angry man he said, “You have to realize how all of your anger and venom is a very destructive way to avoid admitting how much you are losing.” (p. 76).  I almost dropped the book when I read that–I have a hard time imagining ever telling a patient that they “have” to realize anything.  However, his pep talk was apparently very effective, and the man ended up “dying well.”

I don’t know.  Maybe I’m not far enough along in my career to insist on such things; perhaps with time and confidence I might find that I have started to tell people what to do (and how to die).  Byock’s also an MD, and…well…they tend to be more comfortable…prescribing things (including, but not limited to, medications).  Far be it for me to criticize the truly great Byock.  His book gave me a lot to think about.  It has inspired me to join my patients in looking at their lives and impending deaths more deeply.  I do that with some patients–some of them are eager to do so, and it’s very rewarding to go there with them.  Others are much more reluctant, and I’m working on getting better at digging a little deeper with them.  And then there are still others…you’d be surprised at how often we in hospice are forbidden by our patients or their families to use the word “death” (or even “hospice”).

I’ve met people who have had good deaths.  But I’ve also been privy to final journeys that do not come even close to Byock’s description of how to “die well.”  Sometimes people don’t have enough time to come to terms with the end of their lives and to make peace with it and those they love.  A lot of people are in hospice for a matter of hours, and there’s little hope that their hospice team is going to be able to do a lot for them during that time, either, regardless of what we suggest (or tell) them to do.  Other people who have more time still never seem to be able to fight their way through their fear or sadness or anger to “die well.”  Maybe they lived their whole lives that way, and they’re not going to change just because they’re dying.  Or maybe they didn’t have the right guidance.  Or maybe it was just too hard.

So what about those people?  What are we to make of their deaths?  I’ll talk more about that next week.  But I’m curious about what you think.  What, for you, is a “good death”? What would you need to do to “die well”? And what does it mean if you don’t manage to do that?