Good afternoon to all of you.
I am a clinician in the trenches, and I think that what I'm going to say to you will answer a lot of those questions, because I'm going to show you that it's all practically possible and it delivers good results.
I'll present myself. I am from South Africa. I came here in 2004, to McGill, initially. Then I went to Ottawa, and I'm now in Brampton. I am a qualified internal medicine specialist, as well as a medical oncologist, and I also have a degree in palliative medicine.
In South Africa, which has the reputation of having the most hospices in Africa, we indeed have a recognized university degree. I was in the first class that got it, in 2004. We do see that having it formally recognized changed a lot of government policy.
I'm going to reference two documents. The first is Bill C-277, which clearly says that in order for a patient to have a proper...and to really have a voluntary decision to participate in medically assisted dying, he must be given the choice of palliative care. I think that has motivated me a lot to develop what we've done.
I'm not sure if any of you know about the 2015 quality of death index. It's a report by The Economist's intelligence unit, and I think it is enough motivation to say that Canada is at number 11 on the list. This is not good enough. Before I got to Canada, I did read that the Honourable Irwin Cotler, in 2002, when he was justice minister, said that palliative care is a basic human right, and I think we should move forward on that one.
You may have heard many definitions of palliative care as an approach that looks at patients who have life-limiting disease and their families, and that is impeccable symptom management. It definitely involves the psychosocial, spiritual, physical, and every other domain of a human being. It's holistic care.
In the World Health Organization definition, there are little attachments that people don't know about, and I'm going to speak specifically about three of these attachments.
First, palliative care “affirms life and regards dying as a normal process”. It doesn't “hasten”, nor does it “postpone” death. It “offers a [full] support system to help patients live [as long as possible and] as actively as possible”, keeping people as comfortable as possible for as long as possible. It has a goal of enhancing quality of life, and once again, it is “applicable early in the course of illness”.
This is not just about end-of-life care. We now know from many clinical trials in patients.... The most topical one is in patients with metastatic lung cancer. The patients who were randomly assigned to receive palliative care and normal chemotherapy had less chemotherapy and lived longer.
This is the model that we put together, initially in Ottawa and now in Brampton. What it looks at is the four pillars. This is a model where we start with an in-patient palliative care service for those patients requiring specialist palliative care: terrible pain that's not controlled, extreme anxiety, or existential issues, so the patient needs to come into hospital to be treated in a palliative care unit.
We also have a consultative service in our hospital, where patients are referred to us from the different wards—orthopaedic, medical, geriatric, internal medicine—and I'll show you that. Patients are seen and treated in conjunction with the most responsible physician. We cannot see all the patients. There are more than enough patients, so our aim is to build capacity. I'm surprised that nobody is speaking about building capacity at such a great level, but we have an enormous obligation to build capacity.
Then, what we recently started is the ambulatory outpatient clinic; we have patients who are able to come to the clinic and are seen. We also—I'm going to show you some results of this—have a robust community service. We have patients being seen in their home by a physician, as well as a nurse. We work as a dyad.
Around the centre of these four pillars, we are embedded within education, because without education we will never be able to build capacity. In our specific area in the LHIN, we have made it a goal to have as many of the LEAP courses as we can to build capacity. I'm sure you've heard of that, learning essential approaches to palliative care, with the Pallium project.
Then, of course, we all need to know that research is important. Why is it important? Because research allows you to have that margin of error. It tells you you're not doing as well as what you want to do, that you need to research this to get better. It's a self-audit. Let's use our model, and it works.
Since I started this program in Brampton, these are the patients who have been referred to us as new patients, and you will notice that the majority, more than 765 patients have been referred to us from general internal medicine. Palliative care is not only about patients with cancer, and I will once again ask you to please not call them palliative care patients. They're patients with cancer, cardiac failure, renal failure, chronic obstructive airways disease. They're patients with a terminal disease.
We're getting patients from all spheres, and this brings in the question: how do we bring it in earlier? How do we start the earlier goals of care discussion? From the ER, we've had 104 patients referred directly to us. How do we start the discussion of advance care directives, not necessarily saying that a DNR doesn't mean any treatment? I like the term ANC, allowing natural causes, but, of course, explaining to a patient that it means that everything possible that can be done will be done to keep them as comfortable as possible for as long as possible.
Here are some little graphs that we can show you since we started the palliative care outpatient clinic at the Brampton Civic Hospital, as well as the Etobicoke General Hospital. We only got it going in April of last year, but you can see that we're having more and more patients referred to us on an outpatient basis. We have already admitted 60 patients into the ward directly from the community through the outpatient clinic. They have not gone to wait for a day or two in the ER, where you have 400 to 600 visits a day, where you have people coming from the long-term care facilities who can wait 30 hours there, where you have 300 patients from the long-term care facilities dying in the ER while waiting to see a doctor.
Seeing them in the community, putting them into the outpatient and then, if necessary, admitting the patients.... You will notice, of course, that the last month or two we've had a decrease in palliative care clinic visits, the reason being that we've had more home visits. We're taking the palliative care to the patients where they want it and wherever we can do it as is best, but it's a dyad. This is teamwork. This is about communication. This is not about the patient belonging to me, and that is where I appeal to you to try a funding model that is not fee for service.
If you have a funding model that's not fee for service, everybody can be obliged to do education, to do research, but when you have a fee-for-service model, it's about how many patients I can collect. That is the one recommendation I would say. We move the patients into the community, but of course, we change the funding structure of how people are paid.
The other program I'd like to speak to you about is the palliative rehabilitation program. This program was designed and implemented very successfully here in Ottawa at the Élisabeth Bruyère and the Ottawa Hospital. The goal of palliative rehabilitation is to enhance the physical, psychological, social, and professional well-being of the patient.
Answering the questions that were asked by Mr. Webber about whether we look at the spiritual aspect, each one of our patients gets a spiritual history. You can have a physical history: how is your pain, your nausea, your vomiting, your anxiety, your depression? But for your spiritual history, it's do you have faith? How important is it to you? Do you have a community that you work in? Do you have community support and how would you like me as your physician or your health care provider to provide a spiritual backup for you?
The palliative rehabilitation patients we're seeing here. I'm just going to show you. This was an eight-week program where we had the patient see the OT, the physio, the dietitian, the social worker, the nurse, and the doctor with the patient and the family at the centre of the team. These are values that are taken before the program and eight weeks later, and you can clearly see the statistical significance of the general activity of the patient that's improved, their mood, their working, their relationships with others, their walking, as well as an enjoyment of life. These are validated tests shown statistically significant.
I have to bring you one of these because this is the patient testimony, if we're talking about patient-reported outcomes and what it means to the patient and their family. They said, “I feel I have been remiss in not writing to you sooner. I cannot say enough about how positive I felt being involved with your team. The thing that impressed me most was your profound respect for me. I think that this was only surpassed by the admiration and respect you had for each other. This allowed me to open up and be more trusting. I knew that anything I shared of value and significance was relayed to other team members. My wife and I were no longer on our own.”
None of our patients want to feel helpless, hopeless, and abandoned. It's our job to take that away from a patient. “Simple things seem to take on a profound meaning 'you need to eat more', 'don't feel guilty about resting', 'you don't have to endure the pain, that's why we give you medication” are a few things that come to mind. As I write I realize that the most important thing is that we felt we were part of a team and that made all the difference.”
So how do I see the future? I see the future with public health, billboards at the side of the road saying, “This is palliative care. It is not physician-assisted suicide”. I also say to you palliative medicine specialty training needs to be brought to the fore. It's happening. It needs a push. The funding of hospital and community palliative care rehabilitation teams, which is not an expensive funding model, have been off course to push the leap as well as the Pallium educational sessions and research.
I thank you for your attention.