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Death and Life in a palliative Care Unit

As I turn the corner from the elevator I come face to face with the corridor leading to the palliative care ward on the eight floor of St. Boniface Hospital. At first glance it looks like any other ward in a hospital. The corridor is filled with dollies piled high with supplies; towels, food trays, TV monitors, tables with yellow gowns and antiseptic dispensers, and often a stretcher. I bob and weave down the corridor. I pass the nursing station, glancing at the board to see which nurse my family member will have for the current shift: Tristan, Kristen, Neil, Dana, Gina, Chelsey, Brenda, etc.; it really won’t matter; they are all attentive, cheerful, gentle, never leaving the room without asking him if he needs anything else. His comfort, not a cure, is their goal. This is what makes the ward unique. The attendant Paul is unusual. He is the resident roadrunner, always upbeat, darting in and out, putting on the brakes just in time to gently drop off or pick up what he needs to. You know he will not keep you waiting if he can help it.

As I pass the rooms the curtains are always drawn sufficiently so that I cannot see the patient. I just know someone is dying and there is a family member, a relative or a friend quietly sitting there, perhaps reading a paper, perhaps thinking of pleasant memories or just staring into space.

After donning a gown and applying antiseptic to my hands, I enter my nephew’s room. He is likely resting, his face lying to one side, sound asleep with his eyes half open, as well as his mouth. It is a look of exhaustion rather than peace. But not of pain or discomfort. He does not stir for perhaps thirty minutes to an hour. What used to be a smile of recognition when he would awake is now replaced by eye recognition but little facial change. I just know he is glad for the presence. We talk little. When I ask a question, there is a long, very long pause and eventually a quiet answer, often just a yes or no. When he sits up on the edge of the bed and looks at me I feel vulnerable; he seems to see right into my heart, my mind and thoughts. I hope he sees my love. Yesterday I got my answer. As I was leaving he squeezed my hand: “I think you could take me today,” he said. I knew exactly what he meant. When he was a child growing up I always used to squeeze his hand and tell him he had to get on his knees and say “uncle.” As he became a teen it was harder to get his cry for mercy. I remember the day he promised: “You know that one day you will be saying ‘uncle’ to me.” Of course I was delighted when that time came. And now he was acknowledging that fun game we have played all his life.

My concerns have diminished. Now only the essentials matter. Is the pain level low? The nausea? I monitor his eating –less and less, but he still likes a snack so I make sure the Monday afternoon cake treat and the Thursday afternoon snacks from volunteers are brought to him. What about the stomach infection and the ever filling bag? Did the bag burst in the night? In spite of multiple attempts to modify the procedure the answer is often discouraging. But what is more obvious is the resignation. There is no visible anger, no sense of frustration, no lashing out. Just acknowledgment of the reality. He is courageous, accepting, grateful. “Thank you” is probably his most frequent utterance. . One morning when I arrive, as usual I ask him about his pain level and nausea. Both are bad. I grimaced. He looks at me and says “But you’re here.” That seems all he wants.

There is little rushing to and fro. The nurses, doctors and health care aides carry out their work in a manner that signals they have time for you; time for patients and time for the family. One feels free to ask questions, to even engage in some conversation on the life of the dying loved-one, the stresses one has. The pace of care is healthy and consoling for the patient and family. Somehow that pace also allows me to sit quietly in the room, working on the computer, reading the paper, or even resting. It keeps me calm. Are his pillows comfortable? Is his laundry clean? Is his phone nearby? We have chosen his readings for his funeral, and so I find I am reading scripture to him less frequently. But when I ask him if he would like me to, he usually turns the question around: If you would like to! A cousin arrives, stands beside him as he sleeps, and silently her rosary beads slip through her fingers. I weep as I pull a sheet up over him when he lies down. The only gesture of love I can express right now.

The team of doctors, often three, including two residents in training, arrive daily. But they change. I would venture to guess that my nephew has been visited by a minimum of a dozen doctors in the six months that he has been on the ward. I am very impressed with the seamless transition. Records appear to be detailed and passed on appropriately to the next one on duty. One does not have to tell the story over and over again as a new person come into the picture. Yesterday I met a new doctor. He knew that I was an uncle and that I come every day and he was right on top of my nephew’s current situation. I was immediately comforted. One resident doctor is in advanced pregnancy. A beautiful sign of new life in a ward where death is a daily reality. The doctors ask my nephew about his treatments; they explain any proposed changes. Where possible they offer alternatives. It is a patient-oriented exercise, notably unhurried, calm, attentive.
At the end of each shift, the outgoing and incoming nurses come into the room and summarize the situation of the last eight hours. That has often given me insights into problems or incidents that have arisen during the shift. These nurses are not afraid to acknowledge the presence of family members when appropriate. I write an e-mail every evening to seven different families across Canada summarizing the events of the day. These transition meetings help me to keep in mind the big picture. I occasionally ask questions at that time, and can add observations of my own which I have found to be well received. I feel included in the care of my family member.

My sense is that the staff like each other, support each other in their work, and truly work as a team. I do not take this for granted. I know gossip, back biting, jealousies, nastiness, lack of cooperation and even sabotaging can all poison a work climate. Harassment is a common problem in the work world. When this occurs, the patients, the families and the care invariably suffer. I have not seen any indication of this kind of behaviour in this ward. On the contrary I have seen numerous examples of one nurse going out of his/her way to help another, an aide offering to do something for a nurse and vice versa.

Over a couple of days I come to know the spouse, the daughter, the son, the grandchildren, aunts and uncles of some of the other patients. Those who can’t come or don’t come are known only to the intimates and the patient. The phone is an important communicator. For some present there is private grieving and they pass by with heads down. For most, we exchange smiles, and words of understanding encouragement. We talk briefly in the halls, at the coffee station or in the sun room at the end of the hall. Some say they are praying for a miracle, others are resigned. Most of us simply don’t understand the mystery of suffering and death. I pray for the peace that surpasses understanding.

I offer my family member a wheelchair ride to the sun room. What used to be an automatic yes is now a rare agreement. We sit there looking out over the downtown. Like the patients, the buildings each have their own identity. The trains, like toys in the distance pass by in both directions. Most of all we are captured by the junction of the two rivers. We watch skaters holding hands, we see youngsters developing their hockey prowess. Then we watch the ice turn to water, and the water rise as the spring melt makes its way into the rivers. The seasons are changing. More birds streak across the sky. Life is carrying on. Further down the sun room a woman in her late forties looks at her frail mother. Her smile is transparent, filled with love and concern for this mother who has obviously given her daughter so much of her own life. Right now she can do little for her mother, but she is in fact doing the most important.

Death takes place very quietly. It is preceded by a larger number of family present, a going in and out of the room, whispering in the corridor, brushing aside tears -both men and women. It is very private, intimate, and not at all disruptive of others. Other patients don’t even know. Two days later an obituary appears in the paper, noting the courageous struggle that has gone on, and invariably adding a word of well deserved thanks to the doctors, nurses and staff of the palliative care unit.

(I wrote this after visiting the palliative care unit at St. Boniface daily for almost six months, not knowing that I would continue that for another four months.)

By: Raymond F. Currie