Life Panels, Hospice and What's Really at Stake at the End of Life

Let me begin this blog with a good dose of empathy for everyone on every side of the health care debate when it comes to end-of-life issues.  I say this because, while my vote swings all the way left on this one and I actually had physical waves of anger over the summer when people began to label the part of Obama's plan looking at the money spent in the last part of life "death panels," I also understand that no one, but no one has easy choices put in front of them at the end of life--one's own or the life of a loved one.  Although I believe that the label "death panels" came out of a gross misunderstanding of a necessary, even compassionate, step toward handling end of life with dignity, sanity, and financial responsibility, I can still understand how, if a person truly felt that Obama's plan would mean that helpful resources would be cut off just as they were in pain or in the darkest places of fear and uncertainty, a person might come up with a reactionary label like "death panel" and say, "No Way!" to the whole of health care reform.  

I can understand that feeling.  But I also believe, right down to the bottom of my soul, that it's based on both a misunderstanding of the plan and a deeper misunderstanding, or simple lack of experience, with what a "good death" if there is such a thing--and I believe their is, might look like for everyone involved.  

Our culture, over the last many decades, as we have had more advances in medicine and more ways to control certain aspects of and even extend our lives, has becomes more and more removed from a process that used to be a natural part of every family's life.  Relatives died.  Often at home.  Extended care during periods of chronic illness, too, used to happen more at home--with doctors and nurses and other therapists making real house calls.  When I went into medicine, this aspect of really entering a family's life at crucial periods is what drew me.  It still happens in a few practices around our nation.  I just had dinner with a recently retired, 77 year-old family physician in Connecticut who saw 40 patients a day and made regular house calls.  His warm face and rosy cheeks lit up as he told me how he knew which patients would probably do best--those whose families cooked for them, brought them their favorite blanket or pillow, or just held their hand and hold stories.  The other patients, he said, needed him more.  Those with no one to support them through illness. 

I, too, was able to do house calls while I was a resident in Family Medicine at the UW-Madison, and when I started my practice, I continued to have a few patients who needed and welcomed these visits.  In some places, like in the small town of family I once lived with in southern Germany, or in the little town my husband once got sick in in southeastern France, doctors make house calls regularly, bringing necessary medicines and herbal remedies.  My husband's bill for a one-hour "hotel visit" in France 6 years ago was $25 dollars.  All of this is just plain good medicine.  When you get to know a patient in a personal context, over time, your medical judgement improves and so does the healing relationship.

This is a lead in, in a way, to what can happen in a hospital, extended care facility, or hospice program, when the patient, family members, and a dedicated health care team come together to talk about wishes at the end of life.  Standard hospitals succeed, to varying degrees, in handling these conversations and assisting in valuable decision-making.  I was lucky enough to work with many pulmonologists, oncologists, and critical care intensivists during my training years, who were skilled in handling the procedures and tests which would be done to extend life, and yet, many of them were also willing to come to a patient's room or schedule a family conference to discuss whether the tests and procedures had a real chance of leading to a meaningful extension of life. Unfortunately, I've also been a part of medical teams and events in the life of family members and friends where this didn't happen well, gracefully, or at all.  And it is excruciating.  It is made worse when the family hasn't discussed ahead of time, with their loved one, what he or she might have wanted.  It is hard enough to have to carry out difficult decisions at the end of life.  It is torture when you just don't know what your loved one would have wanted.  You couple grief with doubt, and the space inside you that holds the pain seems bottomless.

I remember vividly a week when I was on call as the junior resident (the intern) in the medical intensive care unit.  An elderly gentleman had come in, unconscious, with an illness no one could fully explain.  The week prior, he had been a vital, 93-year-old, mowing his lawn, keeping his own house up after the death of his wife, mourning her loss, but still able to enjoy his children, grandchildren, and long-time neighbors.  He was one of those quiet pillars of the little community near where I grew up.  Then...in the blink of an eye, over the course of a day or two, he got weak, confused, and finally dropped into unconsciousness.  The scans didn't show a stroke or aneurism.  The EKG and enzymes didn't show a heart attack.  He had no known cancers.  He didn't seem infected.  It was a mystery what had taken this robust man down.  

His daughter was the first family member I met, and she was soon joined by several of her siblings, some from close-by, and some from across the nation.  It was clear that they were basically a close, amiable family, each with a personal tie to their dad.  Yet, by day two or three, there was clear tension mounting.  Most of the relatives who had been there from the start, who had seen the string of x-rays, scans, blood draws--and more blood draws when the first tests came up empty, the constant adjustments of the respirator (because he increasingly lost the ability to breathe on his own), and then the tremulous jerks medicated and partially subdued with opiates and other drugs, was starting to say, "Enough. Enough. Whatever shred of consciousness our father has, let's not disturb it further with more tests that seem to go nowhere.  If we had real hope of finding an answer and waking him up, we'd do it.  We'd go along with the tests.  But we don't, and we have to accept that and let him go without such a struggle."  But there was another group of relatives, led by a more vocal brother, who just couldn't stomach that answer.  In his mind, his dad had been healthy and capable beyond expectations for his years, and whatever it was that had occurred had to be better named and understood before he'd be willing to give up.  He was not belligerent, and in this case, I did not get the feeling that his opinions came from a sense of overwhelming guilt, which is sometimes the case.  When a family member has either been estranged or simply unable because of time or distance to participate much in the life or care of a relative, he or she is often overcome with a sense of loss and guilt so great that the only way of dealing with it is to turn it into a vigorous fight, a protest and a demand that everything, absolutely everything medically possible be done for their loved one.  Perhaps then, thought the extensive and heroic efforts at the end of life, this person believes their own heart and mind might rest.

But this was not the case with this man.  He had been able to be present as best he could in his dad's life with some regularity, and the quality of their contact had been solid.  Not perfect, but solid. I sensed grief, but not overwhelming guilt in his words.  And I also sensed a reasonable, rational question, "Have we done enough?  Dad was a fighter.  Are we fighting hard enough on his behalf?"  

There were good doctors on this patient's team.  Conversations had been had.  Tests had been explained.  The lack of real data on just how good, how likely or not to lead to an answer or to an extension of life the procedures were had been explained.  There were trends, educated and experienced guesses, but no promises.  And no one inside of the father/grandfather's consciousness to tell them what, exactly he wanted.  

Every time I entered the room for a couple of days, I noticed my own chest tightened.  I watched all the kids alternately holding their dad's hands and then lapsing in and out of discussion, in and out of debate over what would be best.  Then back to strained silence.  I wanted so badly to have an answer for them, a real statistic to guide them, a crystal ball to know, directly, what their dad would have wished.  Finally, late one afternoon, I simply said the only thing I could think of, having observed them all together for those days.  With my own heart racing, I simply said, "I can see how hard all of this is for you.  I wish I had an answer.  Even though I don't, it sure seems to me that if I were your dad, I'd be touched by how much all of you care about him, by the fact that you each feel so deeply about honoring his life that you would even have this argument.  I think he would see that what each of you feels is your own way of saying that his life and the quality of it mattered to you."  I felt a embarrassed, even uncomfortable in the silent moment that followed, not knowing whether I had offended them or confused them or just stepped in where I wasn't needed.  But then someone breathed, and someone else began to cry, and a third family member gave me a nod, as if to say, "Thanks.  We get it."  I think I noticed that the circle of family, which had spread itself out around the room, occupying different territories, leaning in a little more toward each other and toward their dad.  A few got next to the bed again, putting a hand on a leg or an arm or the forehead of their dad.

Not much more happened for the next few hours, but late that night, while I was standing by, the father, who had been unconscious now for about 5 days, sat up, opened his eyes, reached out his hand for the daughter who was nearest by, and said, "I love you, Honey."  And then he closed his eyes and went back into a coma that he never came out of.  After a new wave of tears and awe and then some more silence, the family started talking with one other.  In the morning, they told me their decision was to stop with the tests and to gently, carefully, stop some of the medicines and machines that were keeping their dad going--pumping his heart and breathing for him.  Sometimes this process can last a long time.  It is not always easy, but the nurses in this case were excellent, telling the family what they were doing, what to expect, and encouraging them to talk to him, sharing their feelings and their "blessings" for him to let go if it was time.  I remember a young grandson who was having a really hard time with himself.  He didn't want to be there.  He didn't want not to be there.  A wonderful nurse told him that he might tell his grandfather about something he was grateful for, something they had done together, something he would remember always in his heart.  The boy did, tearfullly, and after he got it out, he was better able to stand there, and give his grandpa's hand a squeeze.  We don't know for sure if this registered in the consciousness of his grandfather, but it's a distinct possibility, given all we know about the personal reports and neural activity of people who have come close to the edge of death and then recovered.  

In this case, almost as soon as the respirator was stopped and the next morphine dose was given, their dad's heart stopped, too, and with as much dignity as he had seemed to live, he let go.  Gently, peacefully, with the whole family present.  

I do not know if things would have been different had we done more for him, medically.  Honestly, I do not think that that is what that family thinks about when they think of their dad's and his life and death.  I think their grief is ever-present and real, just as their gratitude that they had a day of peaceful presence with him before he let go.  I like to think that each family member who shared something in that time got to rest a little easier through that sense of acknowledgement of what this man meant to them.  From my own experience of being with my family members and friends during and after the death of a loved one, the chance to share a space together, to hold together the mystery and tenderness of what life has meant and what one takes with them into death are profound.  They are, in my opinion, what allow us to go on, to live without paralyzing fear of death before one has done what they needed to, made peace with the people and events of their lives. 

When good health care is at work, a little space is made for these experiences.  Of course, good health care also means a wise and honest look at the value of further medical procedures, and these decisions will not always be easy.  My husband's grandfather had a coronary bypass at age 92, and lo and behold, he has done tremendously well.  With the care of his family, he lost 30 pounds by eating a better diet and walking.  He's always been a regular and generous community volunteer, and with his new vessels, he's been able to do even more without his chest pain.  He is, perhaps, exceptional in his personal motivation and capacity for recovery and generativity.  Some family members have said to me, "Under Obama's health care proposal, his bypass wouldn't have been possible.  His care would have been rationed, and statistically, Dad wouldn't have been a good risk.  We all would have missed these years."

My response is really three fold.  If this were true, I would personally have to empathize with them.  No one, but no one, would ever want to feel that their personal chances of meaningful recovery would be cut off by medical shortages.  But I believe that this is not necessarily what good, "evidence-based" and "efficacy-driven" health care is driving for.  Ultimately, I believe Obama's plan intends to empower doctors and families to make good decisions together, based on medical trends, personal values, AND differences in personal circumstances.  In the case of my "grandfather-in-law," he had several positive predictive factors going for him.  He had little other disease, excellent family support, a history of high motivation and community involvement, and (and this is a very interesting and), he would have predicted himself that he'd do well with the procedure.  When I worked for Dean Ornish, MD, we found that the factor that had the highest predictive value in how well a person did in our lifestyle change program was not how old they were, how sick, how bad the cholesterol or chest pain.  It was the answer to a simple question, "How well do you THINK you will do in this program."  Those who answered that they would do well, by in large, and with strong statistical significance, did well! That is the kind of thing that can be quantified and used by hospital and health care teams to decide who gets care.  Should it be the only factor? No.  But, if it is statistically significant and readily "knowable," then Yes, it should be included in the decision-making.  

There are now thousands and thousands of stories and data points that exist about spending trends, quality of life, and personal meaning and peace for relatives and patients when appropriate decisions and support are given surrounding serious illness at the end of life.  The LIFE PANALS Keith Olbermann so eloquently refers to in his special edition of Countdown on Wednesday Feb 24 can help mediate that.  And our government can help ensure that such groups of guiding agents are ready and available for families who need them.  My hope and call to action would be that we use the best of our technology, the best of our statistical pattern recognition, and the best of our personal capacity to connect, listen, ask questions of each other, and to use sickness and even death not as a fearsome process to shut us off from ourselves and eachother but to better honor the meaning of life.  I believe that this will be one of the most meaningful things any of us can do to live our lives with less of the crazed race to do everything possible in life to deny our own vulnerability and aging.  

My own grandmother, who, through all the stories of life, love, loss and resilience she taught me, asked our family to throw a tea party for her when she died, to get out her best dishes and tell our best stories and to laugh, even in the midst of any tears.  We did this, wholeheartedly, releasing a hundred pink (her favorite color) balloons into the air at her funeral.  But without the conversations initiated in our family and encouraged by some of her doctors, we never would have known that this was the celebration she wanted and the celebration we needed.  Now this memory, and the twinkle in her eyes, are as fully emblazoned in my mind as any of the hard days of her decline, and I can laugh a little as I wonder if I, too, will be an eccentric old lady one day who laughs and cries easily and gets to say the most outrageous things with impunity.  And I can hope that through my own honesty about death, I can draw anyone I love closer to me and help them get just a little more comfortable with this unavoidable passage in life.

These are just the reflections of a 41-year-old whose had, so far, a pretty good life, and whose experienced, so far, just a little bit of the face of death.  I'll write again when life has taught me more.  But from where I sit now--doctor, family member, friend, and person with some living to do, I think I'll vote for the Life Panels.

Comments

[John Stampen]

Wondeful stories! Very touching... thanks for sharing them.