Every morning before going on his rounds of the palliative care unit at the Grey Nuns Community Hospital, unit director Dr. Robin Fainsinger listens to the night nurses’ detailed report on the fragile victories of the dying against their diseases.
“It never gets boring,” says Fainsinger, a short, spry man with a thick moustache and the subtle traces of a South African accent. “Partly because of the different challenges, the spectrum of people you see. There may be similar patterns but everyone has a unique illness and experience of it. You can’t do anything about their circumstances, but you can help them deal with what is going on in their lives.”
On July 7, 2006, the morning report is fairly typical. An HIV-positive man with lung cancer metastasized to his bones has had repeated bouts of incontinence. He tried to get to the bathroom alone, but in his pain and weakness he fell down. He tried to clean up his mess himself. As the nurse puts it, he is suffering from “injured pride.” A few rooms away, a woman with a virulent cancer of the jaw doesn’t want to take her laxative because it makes her feel nauseous; a young woman with cervical cancer is afraid to go home; a man with tongue cancer wants permission to smoke. Dr. Fainsinger orders an MRI of the first patient’s prostate, a change in laxative for the second, a visit from the psychologist for the third, and gives permission to the fourth.
“The majority of terminally ill patients have relatively simple needs,” Fainsinger says. “The ones at the unit have cancer that has spread in a way that causes difficulties—problems with severe pain, nerve damage, mobility—or they have extreme existential suffering, so that even the mildest pain is too much for them.”
Palliative medicine veers away from the idea that death is a medical or scientific failure. The therapeutic goal is to maintain a quality of life for people who have run out of time. It emphasizes symptom relief and the promotion of spiritual, psychological and social comfort. Many of the staff at the Grey Nuns palliative care unit have worked in its 14 rooms for many years. There are 24 full and part-time nurses and a team of experts including a psychiatrist, music therapist, physiotherapist, occupational therapist, pharmacist, social worker, chaplain and dietitian. Volunteers host tea times every week. There have been puppies, parties and weddings at the unit. It is a warm and safe place to be when your life is darkened by fear and pain.
Still, most people want to die at home. Vicky Anker, 63, is waiting for a trial discharge from the unit. She is sitting up in her hospital bed, chewing gum slowly and deliberately. She is small and thin, with a delicate, bird-like head. Her pillow is strewn with strands of shining silver hairs. Ed Anker, her husband of 43 years, is standing by the wall, also chewing gum. They are both feeling anxious after a rough week. Vicky is a strong-willed, stubborn woman with a high pain threshold. But she has spent the past week moaning and weeping in bed, barely able to move. Her daily intake of 900 to 1,200 milligrams of hydro morphine is no longer enough. The pain is excruciating. All Ed can do is watch helplessly.
Most of the patients in the unit have cancer, the second- most-common cause of death in Canada after heart disease. The Alberta Cancer Board estimates that cancer will have increased by more than 200 per cent from 1976 to 2010, partly due to an aging population.
Some cancers begin with a persistent ache, lump or cough. Vicky Anker never felt anything until it was too late. Last year what began as a dull pain in her lower back became an odd sensation in her lower abdomen, as if something had dropped. In July 2005 a biopsy confirmed cancer of the liver. But the primary source was lung cancer, which had spread to her organs, lymph nodes and bones. She was given three to four months to live.
“You don’t want to know what that day was like,” says Ed. “I was a mess. I can’t even remember what happened. My son was there and he asked all the questions. Like, what can we do? What procedures are there? Vicky was dumbfounded. She said, ‘This is not happening. I have places to go, people to see and things to do.’
“When I was in medical school, they would never stop and teach us anything about the dying patients, about how to talk to people about their fears,” Dr. Fainsinger said. “The effect was a poor quality of life.”
“I felt like I got hit with a hammer, or run over with a truck. It took me about six weeks to get over it. I was scared or embarrassed to face our friends. I had a hard time talking about it until my younger son said, ‘Dad, you have to snap out of it. Mother does not have a venereal disease. She has an illness that every family in Canada will be affected by one way or another.’”
On top of chemotherapy or radiation treatments, most terminally ill patients are given combinations of opiates, sedatives, laxatives and anti-nauseants. They rapidly develop immunities. The amount of hydro morphine Vicky is ingesting would put a normal person into a coma-like sleep or slow their breathing down so significantly it might stop altogether. Over three days Dr. Fainsinger has gradually switched her to low levels of methadone. Now she is free to go home.
“Our roles have kind of reversed now,” Ed says. “She looked after me for 43 years, now it’s my turn. But I sometimes wonder why God has picked on the mother. I was brought up thinking that the mother is the most important part of a family. Why her? If there was some way I could have changed positions with her, I would have. I would have done it in a heartbeat.
“She’s not one to give up readily and we’re all going to fight it for as as long as we can, ”he says. “That is our main focus—getting well. She’s gonna get better; she’s gonna beat it. And maybe then we can enjoy the ‘golden years’—although whoever came up with that one should be shot. They aren’t very golden at all.”
“The body can very rapidly develop a tolerance to drugs,” Fainsinger says. “And pain can be extremely complex. Even nausea can be complex. There can be many reasons for it. You can have a patient at home that has advanced cancer and put them on Tylenol, or you can have a patient on hundreds of milligrams of morphine and they tell you their pain is not controlled.”
Fainsinger is a professor in the University of Alberta’s department of oncology, director of the division of palliative care medicine and clinical director of the Capital Health regional palliative care program. He is developing a classification system for cancer pain. Sixteen years ago he left his family practice in Saskatchewan and came to Edmonton to complete the first fellowship in palliative care medicine at the University of Alberta. The region had only two units, at the Edmonton General and Misericordia Hospitals. Only 21 per cent of people with cancer had access to these services; the rest were dying in acute care. Fainsinger fell in love with the possibility of improving people’s lives.
“When I was in medical school, they would never stop and teach us anything about the dying patients. There was nothing left to know,” Fainsinger says. “No teaching about how to talk to people about their fears of dying, no discussion about the difficulty of these patients and certainly no talk of how you manage their symptoms. If you had a terminal illness the chances of a physician being experienced enough to look after you were not very good. Their training would likely have been minimal to non-existent. Your pain, shortness of breath, nausea, fatigue and depression would have been under-managed. The effect was a very poor quality of life.”
In the early nineties, Capital Health began a series of community consultations and formed advisory committees to design a better, more accessible program for the terminally ill. They created a program that covered consultations at acute care hospitals, home care, the tertiary palliative care unit at the Grey Nuns Community Hospital, hospices, a division at the Cross Cancer Institute and a division of palliative care medicine. Nurses, physicians and medical students began to receive specialized training. By 1995, Edmonton had the first truly regional palliative care service in Canada, which was soon copied by other urban centres.
The majority of the 248,000 deaths per annum in Canada still take place in hospitals or long-term care facilities, despite the fact that Canadians tend to want to die at home. Caring for a dying loved one is a stressful, unpaid, full-time job. More than half of the dying will need access to hospice or palliative care services. Statistics Canada projects that the death rate will increase by over 30 per cent by the year 2020. Each death affects the lives of an average of five other people.
The Special Senate Committee on Euthanasia and Assisted Suicide (in 1995) and the Senate Standing Committee on Social Affairs, Science and Technology (in 2000) both recommended increased funding and a national strategy for end-of-life care. “Still Not There,” a 2005 report by Senator Sharon Carstairs, makes the same recommendations and then some. “There have been massive improvements,” Carstairs says. “But not every Albertan citizen has access to palliative services. If you live outside Edmonton, Calgary or Red Deer, you end up in small hospitals or you have to leave your family and go to urban centres. The ideal is to have it everywhere.”
The 2004 Health Accord promised $41-billion in additional federal money for health care over the next 10 years. The provinces agreed to provide coverage for a base level of home palliative care services. However, these programs are still largely grassroots, dependent on charitable funding and volunteers. Government programs and benefits continue to vary from one province to an- other. This past April, Senator Carstairs submitted a motion to the House of Commons urging the government to provide long-term, sustainable funding for the development of a cross-departmental and cross-jurisdictional strategy on palliative and end-of-life care.
“In Ontario, Health Minister George Smitherman finally got it, and is making huge strides,” Carstairs says. “Ontario was one of the worst deliverers, with no province-wide system. But that’s what it takes, a health minister with commitment. It’s much harder to convince them than you might think.”
On the wall at the palliative care unit of the Grey Nuns Hospital, a sign reads, “Cancer is so limited; it cannot cripple love, shatter hope or corrode faith. It cannot eat away at peace, destroy confidence or kill friendship. It cannot silence courage, invade the soul or quench the spirit.” Judy Wagner, 61, has tremendous spirit. She has high cheekbones and sparkling blue eyes, silvery hair and a bright smile. She talks a blue streak, making constant jokes. If she weren’t emaciated, if her bones weren’t jutting out from under the pink sheets of her bed, you might never know she was sick. Wagner can’t wait to get out of the unit and go home. She is happily married for the first time in her long and hard life.
Born in Drayton Valley, she spent her teen years as a single mother of three. For 40 years she worked odd jobs in bars and on oil fields. She also smoked a pack a day. By January 2006, she suffered constant pain in her chest.
“I kept thinking I was going to have a heart attack,” Wagner says. “When I found out I had lung cancer I phoned my hubby to tell him and then I broke down. But that was about it. From then on, it was c’est la vie. There is nothing I can do about it.”
Wagner opted to skip radiation and chemotherapy treatments. The cancer spread to her bones. She was admitted to the unit in early July after undergoing surgery for a fractured right hip. She was also found to have methicillin resistant staphylococcus aureus (MRSA), a special variety of a common bacterium that most people have in their noses. It is resistant to most antibiotics, and particularly dangerous in hospitals, where it can be passed from patient to patient. Usually transmitted by the hands, MRSA can develop into an infection and travel into the blood stream. Anyone visiting Wagner has to put on a face mask, rubber gloves and a full-length hospital gown.
“I have never been in a nicer place in my life. A lady came and washed my hair this morning. They are always doing something special for you. If it wasn’t for their cheerfulness, I don’t know if I could handle it.”
“I hate the masks,” she says. “I can’t wait until the whole gear comes off.”
No one is allowed to touch her. Wagner was delighted when her little granddaughter ran in to her room, poked her with one naked finger, said, “Nanny nanny, cheat!” and ran away.
“As soon as I can get up, I’m going home,” Wagner says. “Until then I guess I’ll be here. Which is okay, because I like it here. I have never been in a nicer place in my life. A lady came here and washed my hair for me this morning. They are always doing something special for you. If it wasn’t for them and their cheerfulness I don’t know if I could handle it. I have to enjoy what time I have left—a day, a week, a month, a year. I am not going to dwell on it and pull anybody down. I gotta stay cheerful, and nine times out of ten I don’t like talking about it. Everyone has to die sooner or later. We don’t think about it unless we have to and even if we have to, we don’t. When I found out, the first thing I did was get all my affairs in order so my kids aren’t going to be responsible for nothing. My husband said it was kind of fast, but cancer can move fast, too.”
Every day, the medical residents, doctors and nurses ask their patients how they are, on a scale of zero to ten. The doctors fill in little boxes with pencil marks, the darkness of which corresponds to the severity of symptoms ranging from pain to nausea to drowsiness. Wagner’s responses are consistently shaded black. By Wagner’s left hand is a device called the “Edmonton injector,” a portable pump and needle attached to a small, clear bag filled with Wagner’s opiate, hydro morphine.
Developed in 1988 by an expert in palliative care at the Edmonton General Hospital, the device allows nurses to give pain medication faster and on demand, like keeping a milk bottle next to a baby. It is given to patients to take home, to inject themselves subcutaneously, between the skin and the muscle, when they need it.
“I’m not that religious, but I do have arguments with God,” Wagner says. “One night I was as at home and I said, ‘God, either take me away out of this world or get rid of the pain.’ The pain I have right now I can control, but that night it was so intense I didn’t care what happened to me. It feels like… I couldn’t tell you. I couldn’t even start to tell you.” Soon after our interview, Wagner’s lungs began to deteriorate rapidly. She had been convinced she would get well. She looked forward to her 62nd birthday, which she would have celebrated this December. When she was cured, she said, she was going to take her husband on a romantic cruise around the world.
But she began to be short of breath all the time. At her request, Dr. Fainsinger adjusted her medication so she could sleep through the last stages of her disease.
The length of time from diagnosis to death depends on the cancer and the individual. Breast cancer in post-menopausal women is not as life threatening as in pre-menopausal. Prostate cancer can take many years to pose any significant threat, while pancreatic cancer can kill someone in three to six months. Terminal cancer patients usually have some time to manage the disease, to cope or fight, and then in a matter of weeks they very rapidly decline.
In the last stages of life, most people don’t even need pain medication anymore. Drugs tend to accumulate in dying bodies as the organs fail, and can cause mental confusion, fits and jerking. Wagner will be slowly released from her dependence. Soon, her lungs will deteriorate until they fail and her heart will stop. But she will die having slept through the worst, and having expressed her wishes.
For Dr. Fainsinger, that is very important. “She was very clear that it was too distressing for her to be awake,” he said. “People cope in their own unique ways, for better or for worse. For me, if you can go home at the end of the day and feel like you have made even a small difference in someone’s life, you’ve had a good day.”
Originally from Quebec, Noemi Lopinto has written for several publications across Canada, including the Edmonton Journal and Alberta Venture. She has also contributed to CBC Radio.