What is quality in end of life care?

What do we want in the last days of life?  We want no pain. We want simple dignity, the physical kind where we clean ourselves, organize our medicine and command our bowels.  As important is the complex dignity of choosing where we spend our final days, make tough decisions for ourselves and, as much as possible, live as a person, not a patient.  It occurs to me that these critical building blocks are foundation for a greater quality goal.  And that, simply, is art.

In the 1920s and 30s, revolutionary psychiatrist and theorist Otto Rank taught that all art was based in the primal fear of death.  By art, he meant not only that which we mold with paint, stone and clay, but any creative activity.  Rank would argue that the architect who designs a bridge, particularly of novel design, is dealing with his fear of death.  The attorney, who develops a new argument, is driven by concerns about his mortality, even is the chef who bakes a complex and colorful pastry.  Rank believed that we cope with our coming death by trying to develop immortal creations and we pour our anxiety and confusion into creative activity and attempt to develop constructs through which we live forever.

Whatever your thoughts about Rank’s hypothesis, it is worth considering that when we think about our wishes for the final days of our lives and what we mean about “quality,” perhaps it is more than common sense goals, such as pain, control and dignity.  Perhaps a “good death” is marked by the ability to create, develop and invent.  Perhaps, a “bad” death is one that cuts us off from the chance to contribute to society and to tomorrow. If we are so isolated, so drugged, and so obsessed with basic biologic functions that we fail to find precious moments when we press figures into clay, teach our grandchildren, read and respond, or play an old melody, perhaps that is when quality truly vanishes.  When we lose the opportunity to create we lose a path to the infinite and are severed from a vital connection to the wellspring of hope.

The importance of this idea, working toward creating artful time at the end of life, gives doctors, patients and families, goals beyond physical comfort.  Certainly, through the rest of our lives, being able to contribute, make a difference, if only in the context of family and friends, is what drives us each day.  If we are healthy, none of us starts each morning by saying, “Well, I wiped my bottom, took a shower and I am not to sore; that’s great, because then I have nothing else to do today.”  On the contrary, while we must never take for granted these simple actions, we feel complete only when we have moved on through the hours to interact, love, learn and, I would suggest, create art.

I like to ask my patients, if it is not self evident, “About what are you passionate?”  For many it is children or grandchildren, for others travel and exploration (which forms new experiences, new ideas and transforms us and is therefore art), some teach, others are absorbed by active or passive sport, many volunteer in their town or church and a few are what society would readily recognize as “artists.”

However, I believe that all of us need to create. All of us need to change our worlds.  All of us need to seek a more pure and wondrous tomorrow.  I believe that since the end-of-life is about living, not about being dead, if we are to find hope and comfort, we must continue to pour our souls, our minds and our hearts into every changing art.

James C. Salwitz is an oncologist who blogs at Sunrise Rounds.

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  • http://www.amerechristian.com/ Ron Smith

    Hi, James.

    Thanks for the thoughtful post.

    I think that I see life as a Pediatrician where it starts. Now 55 and 31 years into practice, I’ve got a personal view of the far side of the hill, and if I live so long, there will be another 20 years or better ahead.

    It seems that when we talk about the ‘end of life’ anything, that we think of it as really the end. In other words a point where we have no more consciousness, thought, pain, etc. There it seems logical to conclude that easing our way to that kind of passing is the best that we or anybody can do.

    But what if that conclusion is wrong? I mean just because we believe that there is nothing after death, then shouldn’t we conclude that all of life is pointless, no matter how creatively passionate we are about doing things?

    Here’s the point. If there is not something beyond, we wouldn’t be able to even contemplate something beyond? If there is not a moral something that draws us to the good things in life, then we wouldn’t even be able to know that there are good things?

    Physicians are no better than non-physicians at death. What we don’t face ourselves, we shield our minds from when we are exposed to death in patients, friends, and even family.

    Recently I completed my book A Mere Christian which is a good read for Christians and non-Christians especially. I believe that we can know that just as there is clear evidence for a ‘something’ before the universe came into existence, there is evidence that we should be paying attention to what we face after death.

    Slipping into death, is not really about smoothly pulling on a glove without getting the ones finger in the wrong finger sheath. Its about the whole purpose of life.

    I know this may sound like a plug for my book, but its a worthy read for everyone believers and non-believers because death is in our future.

    Warmest regards,

    Ron Smith, MD
    www (adot) amerechristian (adot) com

  • Karen Ronk

    Fantastic post. It might help if we were not bombarded all the time by ads telling us how sick we are and how many drugs we need – thus creating a “passion” for more medical intervention. I would guess that our current dysfunction has a lot to do with information overload.

  • Liz

    ‘End of life…

    I don’t even know what that means. When does it begin..this end? How does anyone know it’s the end?!

    I am currently involved in the care of more than a few patients at the ’end of life’. They have been at the end of life for more than a few years. Ages ranging from 70yrs to 95yrs, bedridden, post stroke or dementia, tracheostomised and on PEG feeds….

    To me, now, I don’t think, they have any ‘quality of life’. But I don’t know .
    What is ‘quality’. Who defines quality? For an 18 year old in love for the first time, life would be meaningless without the ‘love of his life’. For an athlete, life would seem to be hardly worth living if he lost a leg, for a painter gone blind, life would be so devoid of color or ‘quality’. But you never know; at 30 the once 18yr old madly in love guy would be happily married unable to imagine a life without his family, the athlete who lost a limb years back would have found that he had a passion for cooking, and the blind painter would have discovered he didn’t actually need his eyes to paint what he felt.

    What I mean to say is that there is no absolute ‘quality’. It means different things to different people and even to the same people at different times.

    To me, the old man who is bedridden and demented, on PEG feeds and a urinary catheter, barely able to utter a word, so totally dependent on others, his life has no ‘quality’. If a 20year younger him were to look at himself in this condition,he would probably say – I’d rather die. But would he say that now? I don’tknow..

    For this old man, with his physical limitations, unable to express himself, his mind in an altered perceptual state, how do I know , how can I tell? Maybe the morning sun streaming through the open window, touching his skin and warming his face sends a glow through his being. Maybe the smell of the lime scented soap and fresh talc when the caregivers give him a sponge bath remind him of a good scrub after a sweaty game at the beach. Maybe among the voices there is a particular voice that he loves to hear, because it is sweet and kind and brings to mind his favourite songs. Maybe when his family visits him – even if it is not very often- he is so happy that he is dancing inside and his heart swells with love when his grandson kisses him on the forehead. Maybe.. I don’t know…

    All I am saying is that, life or living could mean such different things to different people. So many people just live with their eyes closed unaware and unmindful of the magic of day to day existence. Some people have the urge to create, to fulfil a yearning, to channel their restlessness, to express their emptiness, to leave a mark. Some people do what they are supposed to do with their life- accept it, embrace it, breathe in its ordinariness, marvel at the miracle that it is, celebrate it, live it – just be.