“Will you look after me? I’m sick and it’s too far.”
1. You became a doctor in 1981. What was palliative care like back then, and how has it changed over the years?
When I started as a family doctor, I never learned of a palliative care approach. For me, it didn’t exist. Then, in late 1984 my first patient with HIV came through the door. Although AIDS hadn’t been identified yet, we knew it was a terminal illness.
He came to see me at my practice in Mississauga and he said to me: “what do we do?”
“I hear there’s a clinic opening up in downtown Toronto. I’ll refer you there,” I said.
“Do they know anything more than you do?” he asked.
I told him they probably didn’t and he looked at me and asked: “Will you look after me? I’m sick and it’s too far.”
“Of course,” I said.
I couldn’t abandon my patient. I knew nothing about HIV. Nobody did. I didn’t know anything about palliative care, either. But I was only about 29 years old then, still young, and I started to learn. I sought out training in how to deliver palliative care. I became known in my community and I started to get referrals for palliative care.
Since then, palliative care has evolved in major ways. Today, it’s on the radar of most Canadians and it’s a discipline that’s backed by research, evidence and guidelines. We now work in interprofessional teams and we seek to meet the needs of patients and their families in a way that improves their quality of life and the dying experience. We still have a long way to go, but we’ve come a long way.
2. What can you do for patients now that you couldn’t do then?
It’s like night and day. When I started in palliative care, I was on my own. I didn’t have a community-based team. There was no coordination of care. There were no hospices to send my patients to. Either they’d die at home or they’d die at the hospital. I didn’t have a community-based nurse to help me out. We had access to morphine at the time and that was about it. Now I can organize almost anything: pain pumps, special equipment for the home like hospital beds, personal support workers, volunteers.
3. How does your role as a palliative care doctor evolve over the course of a patient’s care?
Palliative care really should begin at the time of diagnosis. By that I mean we should be providing pain and symptom management and advance care planning. We should begin the conversation with people about their potential life-limiting illness, even if they go on to a full recovery
We know that doing it that way leads to better clinical outcomes for patients. It cuts down on emergency department admissions and hospital admissions because you can be pre-emptive.
It’s only a minority of patients who really need palliative care specialists, though. Usually, the family physician can take care of the patient, and the palliative care physician can provide a consultation. As a patient’s health declines, we become more and more involved as required.
4. What are the principles of good quality palliative care?
Good palliative care is very patient and family centred. You’re treating one patient, but their circle of care, their friends and their families, are very much part of the team. You include them in the care. You provide care that is based on the patient’s values and goals. You give the patient autonomy and dignity. I ask every patient what I need to know about them to take care of them. I’ll say to them: “You’re the boss, okay? I can’t read your mind. You have to help us help you and you have to share that with your family so we can give you the care that’s right for you.”
It’s also crucial to never abandon the patient. They need to know that no matter how it goes, we’re going to stick with them, and we’re going to see them right through this. We build a relationship of trust and honesty and openness. And we won’t be judgmental.
5. How important is home care in palliative care?
Most Canadians want to stay in their homes as long as possible. When their physical status diminishes, it becomes very difficult to get to a clinic or hospital. In that case, home care has huge benefits. The patients really appreciate it, particularly older people or people with young children at home.
The opportunity to die at home, which is what most Canadians want, is cost effective. And for health professionals, we learn so much about our patients and their families by being in their homes. We can see what’s actually going on in the family—People are usually at their best behaviours in the clinics. We see the family dynamics and we see what’s really important to them. It may be the photographs on the walls. It may be the religious symbols. We also see what the resources are in the home and how chaotic it is and sometimes we’ll recommend that home care isn’t the best option.
6. What are the top things physicians, and patients and their families should know about palliative care?
1) Palliative care shouldn’t just be based on prognosis. We tend to focus on that, but the approach to care should depend on the patient’s particular needs.
2) Palliative care is about living, not about dying. It’s about living the best life the patient and their family can in the context of a life threatening illness.
3) Palliative care isn’t just about caring for the patient, it’s about looking after the family’s needs as well.
4) Palliative care is an example of excellent medicine. People often tell me “this is the best care we’ve had.” That’s the way it should be. It’s really an example of excellent medicine because it’s comprehensive. It deals with physical, emotional, psychological and spiritual issues.
5) Palliative care is about more than pain and symptom management. It’s also about planning and decision making.
6) Palliative care is not just about improving quality of life, some recent studies have shown that it actually can also extend life.
7) Palliative care should begin at the time of diagnosis and should be blended with disease modifying treatment. If time goes on and the disease progresses, then palliative care increases and disease modifying treatments decrease.