The Final Journey

I was late. I was running hard to catch a train. There were no cabs. Ahead of me on the snowy sidewalk, across from the gates of Montreal's McGill University, was a homeless person. In his outstretched hand was an empty plastic coffee cup. I paused, and, unbidden, my right hand scooped the rattling change from my pocket. Though not completely uncharacteristic, this act of charity was not my usual style. But I had just come from the office of Dr. Balfour Mount, the man who coined the term palliative care, and I was thinking of something he had told me: "No human interaction is neutral. It is either healing or wounding."

Thirty years ago, Mount was a brash young surgical oncologist who performed heroic operations. In 1975, he was the founding director of McGill University's Palliative Care Division. Today, he is the director of the McGill Programs in Integrated Whole Person Care. In his slightly too warm, book-lined office at the Royal Victoria Hospital, in Montréal, Quebec, he is a youthful, laughing, relaxed, silver-haired philosopher. There is a slight catch in his voice, a care with swallowing. He wears black pants and a somber turtleneck sweater, but his face has a glow.

Restoring Dignity to the Dying

When did Mount's journey towards palliative care begin? Did it start with the testicular cancer he had as an intern? Was it during his surgical oncology fellowship at the Memorial Sloan-Kettering Cancer Center in New York, when some of his patients succumbed in spite of his heroic surgery?

When asked, Mount remembers an invitation in 1973 to participate in a panel on death and dying. At first, he says, he thought, "What do I know about the topic?" But then he reasoned, "Hey, I'm a doctor, I must know about death and dying." A panel member suggested that some research should be done on how patients die in our hospitals. A grant was written, and two second-year medical students were hired for the summer. One was so deeply disturbed by his experiences on the hospital wards that he and Mount started to record what he witnessed. "There was something seriously wrong with our system." It was not just poor physical care or uncontrolled pain; it was isolation, lack of communication, and loss of dignity and control.

How did the Western medical system become so inept at dealing with death and dying? When did we mislay our intuitive knowledge of how to ease suffering? Mount now believes it happened when technology and pharmaceuticals and the scientific method shifted the focus of medicine from the easing of suffering to the fighting of disease. First-year medical students expect to comfort the dying, but our system of medical education soon changes their priorities.

Mount wanted to know more, so he telephoned Dr. Cicely Saunders (a nurse, medical social worker, and physician and founder of the modern hospice movement) at St. Christopher's Hospice in London, England. "I know you!" she said brusquely. "You want to come over here, bring your wife, see a few plays, and then have a quick dash around the hospice. Well, I won't have it! Leave your wife at home, come for a week, roll up your sleeves, and get ready to work, and I'll have you." That week was a turning point in his life.

Focusing on the Life Part

Mount believes that the research that Saunders did almost half a century ago – the lessons she taught, and the modern hospice movement she founded – has eased suffering around the world. He wondered if what he had learned at St. Christopher's could be applied in a big university teaching hospital. So in 1975, at the Royal Victoria Hospital, Mount opened what he called the Palliative Care Service (because the word hospice in the French culture of the province of Quebec brings to mind a backwater of medical mediocrity). His commitment to the field hasn't flagged. Since 1976, he has chaired McGill's biennial International Congresses on Care of the Terminally Ill. He has been first holder, since 1994, of the Eric M. Flanders Chair in Palliative Medicine, and he has received the American Academy of Hospice and Palliative Medicine's Lifetime Achievement Award and the Canadian Palliative Care Association's Award of Excellence.

"What has surprised me is how little palliative care has to do with death. The death part is almost irrelevant. Our focus isn't on dying. Our focus is on quality of living." With palliative care, Mount stresses, the patient and their family and loved ones are all cared for. Fears, doubts, relationships, finances, and the need for spiritual care are all considered. Institutional regulations about visitors, food, pets, and other details of daily life are relaxed. When the length of remaining life is beyond the influence of further treatment, the focus is not on curing or the prolonging of life, but on the quality of life.

Mount remembers meeting Chip. Handsome, intelligent, humorous, an elite athlete on the US national ski team – a charismatic figure. "Physically the most magnificent specimen of either gender I have ever seen in my life." But heroic surgery didn't work and neither did chemotherapy. So a year later, at the age of 30, Chip was within days of dying. This had been a year in which he'd lost everything. A year in which he went from looking like a Greek god to looking like a concentration camp inmate. Yet, in saying good-bye to those who had looked after him, Chip said, "You know, Bal, this last year has been the best year of my life." He explained, "I've had a marvelous life, but, this year, I've been stopped in my tracks and I've had time to look inward. The journey inward has been the most rewarding thing I've done in my life."

But there are limits to what palliative care can do, Mount cautions. How much you enjoy your final journey will depend on the baggage you bring along. He recalls Mrs. C, an elderly lady dying of metastatic breast cancer. She had had strained relationships throughout her difficult life. It seemed that no amount of morphine could control her pain. When he asked her when she had last felt well, she replied, "Do you mean physically? Doctor, I've been sick in mind and spirit every day of my life." Nothing can relieve this kind of suffering.

A Fear of Dying; a Passion for Living

I ask about euthanasia. "Physician-assisted suicide is a bad idea. We shouldn't need it if we do the other things properly – if we treat pain, nausea and vomiting, anxiety and isolation." And then there is a long pause. "But I certainly understand, from personal experience, not wanting to prolong life if the quality of life is poor." Quality of life for the dying, Mount believes, is determined not only by the medical things that we measure, but also by the subjective things that the dying person feels. Even in the last few days or weeks before death, we can improve subjective well-being.

Mount feels what we fear most about death is not the act of dying but our subsequent non-existence – existential obliteration. Hidden deep inside our unconscious mind (or psyche) is a repressed terror of just not being. Even unrecognized reminders of our mortality may govern our behavior. Mount himself has suffered recent brushes with his own mortality: a myocardial infarction and an esophagectomy for cancer – both complications of the radiotherapy he received for the testicular cancer. When I ask if he fears his own death: "Ah, let me come back to that."

Perhaps because his work constantly reminds him of the fragility of life, Mount has certainly lived fully and energetically. In addition to his palliative care work, he is an enthusiastic teacher, and has lectured throughout Canada, the United States, Europe, Asia, Australia, and New Zealand. In 1997, he was a warded McGill's Osler Teaching Award. He has authored 130 publications and participated in the production of many teaching films, videos, and audiotapes. He is a member of the Order of Canada, an officer of the Order of Quebec, and, in October 2002, Queen's University, his alma mater, awarded him an honorary Doctorate of Laws in recognition of his outstanding contributions to the easing of human suffering.

"What about dying at home?" I ask.

"We'll come back to that."

"Can we teach spirituality to medical students?"

"We'll come back to that."

But of course we never do come back to any of it. Instead, we keep moving on to some other topic, and in the end we run out of time, and I have a train to catch. I come away feeling vaguely unsatisfied but wishing I could come back for more. This is not the sort of man to interview, but a man to debate with, to discuss with, to go off on tangents with, to rub minds with. Just to spend time with.

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