The long black veil

Dying in today;s world

ANDREW LODGE STAFF

Dying in the West has changed a great deal in the past hundred years. The birth of a more secular, so-called middle class, combined with the fact that today people live on average far longer than they have in the past, means that dying has taken on a very new dimension.

This is not to say that the experience is the same for everyone. Dying is something that culture has not always been successful at making sense of, all the more so given the void left by the absence of religious cosmology in the creation of dominant Western and especially North American culture. In 1969, Elisabeth Kubler-Ross wrote the now-famous book On Death and Dying; she tried, among other things, to delineate a model that reflected the experience of the grieving, dying individual. Kubler-Ross’s definitive model described five phases — denial, anger, bargaining, depression, acceptance — through which the grieving individual may progress in their “final journey.”

It comes as no surprise that Kubler-Ross arises from the biomedical paradigm, and so, while she deliberately avoided science, there is much of the scientific mind that lurks at the background of her work. In medical science, living (and dying) is necessarily (by virtue of its intellectual heritage) divorced from spirituality. Kubler-Ross, while not rejecting religion, endorses a sort of religious relativism common among the middle class, taking piecemeal from religions as one sees fit but not wholly accepting the foundations upon which a given set of beliefs is built. In an interview given shortly before her death in 2004, she said, “I was raised Protestant. In my heart I was Catholic, and I was made into a Jew. For twenty-two years I was a little bit of everything.” She goes on to say that the experience of dying is similar for everyone, no matter the background. To some degree that is true, on an organic level perhaps, but in many ways, the experience is not the same, omitting, of course, the obvious fact that we must all go through it.

4 different rooms, 4 different stories

In the main ward of a hospital somewhere in Canada, in four rooms adjacent to one another, lie four people. They are all dying but that is where their similarities end.

In the first room is a young man. He is in his late 20s and has been diagnosed with lung cancer. He has never smoked, nor worked in a mine nor on a farm, nor with asbestos. In fact, there is nothing about him that would explain his disease. “Rob” looks like he was in great shape once, lean and still muscular although now he is visibly wasting and looks gaunt, angry, and haunted. He lies in bed and snarls at the staff. We move through his room quickly because we know he knows that we have no answers for him. Our conclusion is that Rob is “having trouble coping.” We don’t expect Rob to last for more than a month. His cancer is everywhere.

In the second room lies an ancient-looking aboriginal lady. She’s not actually that old, in her 60s, but she’s got every chronic disease under the sun, diabetes, heart disease, kidney failure, you name it. Her feet are both black and so rotten the tendons are bare; she has gangrene from bad blood circulation due in part to her diabetes, and in part from other causes. She should lose both legs, but is determined to die first.

She doesn’t speak English but her adult children explain that she wants to go home to die, home being a remote fly-in community up north. The hospital staff isn’t happy with the idea. We think we can still “manage” her disease(s). We need to cut off her legs, we tell the children. They insist she wants to go home. We explain that she can’t, that if she does her kidneys will fail immediately, and, if not that, she will suffer from infection; either way, death will be imminent. They shrug. One daughter mutters under her breath, “She wants to die.”

In the third room is another 60-something-year-old woman. “Katherine” is also at the end stage of some crazy aggressive cancer, a cancer that was supposed to kill her within months three years ago, when she was diagnosed, but she fought through it. Now though, the end appears to be nigh. She can’t breathe anymore and her collarbone broke the other day when a family member patted her on the shoulder.

She has read all the self-help books and sought alternative therapies, bathed with crystals and slept naked under the full moon in New Mexico. By society’s standards, she was a successful woman throughout her life and her and her husband, who sits and has sat stoically and “cheerfully” beside her, were well on their way to an idyllic freedom-55 retirement.

They are the kind of people used to being in control of their lives. Now, though, it’s plain to see that she knows her fight is coming to an end. She still looks at us with forced cheer and tries to take an interest, as always, in her treatment plan, but it is obvious that she is scared. After rounds today, she asks about seeing a priest. She has refused religious counselling until now, saying she doesn’t believe in it, but things have changed, I guess.

In the last room lies a man who doesn’t know what century he is in. He believes it is 40 years ago and calls us all “damn hippies” when we come into his room. He drools and cannot feed himself. He is incontinent. He swipes at the female nurses and occasionally at one of the male orderlies who has long hair. He is in his late 80s but hasn’t had a meaningful conversation with anyone (according to his only son, who seems a bit removed) for 15 years. He’s dying but will likely live longer than the other three, provided he gets over the bout of pneumonia he is being treated for. Judging by his agitation and energy level one morning recently, I suspect he will be well enough soon to return to the nursing home to stare at the wall until something else comes along in a merciful effort to take him out.

The difficulty deconstructing death

In some ways, these four stories are archetypal. Without a doubt, the medical success story is the last one, the old man whom we can keep alive on a biological level. Little thought is given to quality of life, but his various medical conditions are managed, by and large, through pharmacotherapy; he eats mountains of pills everyday. This man’s story is not a unique one, and in fact becomes more and more common as the population ages. The problem, of course, lies in how we (in medicine and as a society) define “success.”

The antithesis of his story is the aboriginal woman, whose progression through disease to this (so-called) terminal state is seen, medically at least, to be preventable or postpone-able. But she refuses to engage, as does, to a large extent, her family. She has never taken her pills and wants no part of this sterile hospital world. Her family is angry, yes, not because she is dying, but because she is not allowed to “leave her body” in the place where “her spirit needs to be.”

As for Rob and Katherine, they are similar in that they are both dying young. But while she dies younger than the “norm” she still falls within a range society and medicine consider “reasonable.” Rob, on the other hand, dies in the prime of life, and so that makes him the loneliest of this unlikely group. The medical world has clearly failed him, and so shuns him, for he is a threat to its hegemony. Just as the onus is placed on him, in that “he is having trouble coping,” we also like to say that “he has failed his course of therapy,” thereby shifting the

Kubler-Ross may provide an interesting framework, but like any system, it falls into great difficulty, and ultimately fails, when it seeks to make sense of an indefinable and intangible realm (or absence thereof, for that, too, is a “something”) beyond the boundaries established by the rationalized paradigm. This paradigm, this system of understanding, is something that most of us rely on for our entire lives and so when it ceases to provide an effective “framework,” as is the case with Katherine, it becomes difficult to know where to turn.

Death has always been a mystery. In the past, it was assumed to be part of Emile Durkheim’s “sacred” sphere, as opposed to the “profane” here on Earth. We saw death in those (simpler?) times as a transition back towards a unity, with God, with energy, with the world soul, with whatever. Now, death is defined as “brain death” or the complete and irreversible cessation of electrical activity in the brain. Following that, the natural course of our body is bio-degradation, ultimately down to basic organic compounds. That’s it.

It’s easy to see why the dying are left wanting more at the end of life. Science, while having supplanted faith, has not done much to deal with these difficult questions. And dying before the altar of the scientific method is a lonely experience.