"Palliative care is more than end of life."
That's how Dr. Camilla Zimmermann begins the conversation on palliative and end-of-life care.
Palliative care arose from the hospice movement, which gained momentum in the 1960s in the United Kingdom. In the last 15 years or so, there has been a new movement to broaden Palliative Care and move it to earlier in treatment, says Dr. Zimmermann, Head of the Palliative Care Program at UHN, and Medical Director at the Al Hertz Centre for Supportive and Palliative Care at the Princess Margaret Cancer Centre.
"It's not just about dying, but about quality of life, living with an illness that is life threatening, and preparing for the
possibility of dying," she says.
The Palliative Care team is an interdisciplinary team that includes physicians, nurses, social workers, spiritual care professionals, and occupational therapists. The groups' specialties can also overlap at times.
"The broader part of Palliative Care is dealing with all these different areas no matter where you're at in the course of a life-threatening illness," says Dr. Zimmermann. "End-of-life care is given closer to the end of life and that might be days, or weeks or months."
"Many people aren't comfortable with discussing death"
Despite the fear of discussing death, Dr. Zimmermann says most people like knowing that there is someone to provide guidance.
"Death can be scary and most people don't want it in their face, but they like the idea of being supported," she says.
"I think Advance Care Planning is useful for people who just want to talk about death once and get that discussion out of the way without dwelling on it, and it works for people even if they're uncomfortable with the discussion of death."
Dr. Zimmermann explains that Palliative Care can provide help in several areas:
Dr. Zimmermann believes it's important to know how to deal with the whole range of comfort people have with talking about dying, meet them where they are, and support their needs.
"That's the important thing rather than nailing down the exact definition of what palliative care is or what end-of-life care is. It's more about asking people 'so what do you need right now' and 'how can I help you'."
"People don't want to die in a hall in an Emergency Department"
While death and dying can be a difficult topic to think about and talk about, there is important information that needs to be communicated to a health care team and family members.
"I'm not someone who pushes to talk about death, but I am someone who believes a lot in advance care planning. It's walking that tight line of trying not to make people uncomfortable, but also planning ahead," Dr. Zimmermann says.
There will come a time when a patient may not be able to do things for themselves or make decisions for themselves, so it's important for them to give decision making capacity to someone they would want to have that responsibility and not someone who would be selected for them, she explains.
"Usually I talk to patients about it as a matter of autonomy. It's important for you to make your own decisions, it's important you have the right person available, and also to figure out where you might want to be at the end of life."
"People don't want to die in a hall in an Emergency department for example, which can happen if you haven't planned ahead," she says. "It's not something we have to talk about for a long time and we usually do it in a few visits because people want to talk it over with their families."
Dr. Zimmermann says making sure family members are on the same page with a patient's wishes is important and they shouldn't be fearful of the process.
"Most family members are really anxious when they come and then they're so relieved afterward because it wasn't at all what they expected and they say it's really helpful," she says.
"There is a certain stigma about Palliative Care"
The fear of discussing palliative care can come from being unsure about what it involves and not knowing what to expect.
"I think people think we're going to talk about dying and what they should be doing. But really the whole meeting with the Palliative Care team is focused on what people need and a lot of it comes from the patients and families themselves," Dr. Zimmermann says.
At UHN, the Palliative Care program is wide reaching. The goal is to get involved early and get involved with other programs.
Dr. Zimmermann says that in addition to collaborating with oncologists, the program has established partnerships with physicians who treat congestive heart failure, those who treat lung diseases and transplant physicians.
"The whole idea is to work together with specialists who treat people who have these life-threatening illnesses so we can help them with the palliative care aspect starting early in the illness course. I think that's a unique focus of our program."
Changing people's perception of palliative care is a goal Dr. Zimmermann continues to work at.
"There's a certain stigma about palliative care and I think the myths and misconceptions about palliative care all revolve around dying," she says.
"What people should know is that Palliative Care can be helpful with pain and symptom management, counselling to cope with having a serious illness, help at home by connecting you with community care resources, and assistance with advance care planning."
"Those things are important no matter where you are in the course of a serious illness."