Dr. James DownarI’ve been in end-of-life situations where the relatives brought in margaritas and we had a beach party for somebody who was dying because that’s what he always wanted.

1. Can you talk about the work you do now?

My clinical time at Toronto General Hospital is split between the intensive care unit and the palliative care consultation service. I also have an academic position at the University of Toronto, and my work there is largely in the area of education. I train residents to talk about goals of care and other issues that are relevant to end of life.

2. How did you get into palliative care?

It’s a funny story. When I was accepted to medical school, they had a mentoring program to connect students with physicians in practice. So, they sent a form asking if there were any fields of medicine that were particularly interesting to me, and any that didn’t interest me. I remember distinctly that I only wrote two things on the form: that I did not want to go into palliative care and that I didn’t want to be paired up with a psychiatrist. Sure enough, they put me with a psychiatrist and here I am in palliative care.

I went into medical school with all guns blazing. I wanted to cure disease and make people healthy. But as you start to treat patients in a hospital, it quickly becomes apparent that the vast majority of conditions you treat people for are actually incurable. You just manage it as best you can, and you often can’t even do that. Often you get the feeling that you’re making patients very uncomfortable and causing them harm in the process of trying to treat an illness that can’t be treated or cure an illness that can’t be cured. I realized after awhile that some of the most rewarding experiences that I had were the ones where all I’d really done was made them feel comfortable, had a good conversation with them and helped them manage with their illness.

I remember in residency that I’d leave work after my palliative care days with a big smile on my face and the feeling that I’d done a good day’s work. I only had to experience that a few times before I realized this is what I wanted to do with my life.

3. Leaving work with a smile on your face isn’t what most people think of when they think of palliative care…

Oh gosh, no. Some people have a negative impression of end-of-life care, and they imagine you’re dealing with people in their final hours and everybody is crying. I don’t want to sound callous when I say this, but you don’t get a choice, in most cases, whether you’re going to live or die. You almost always have a choice in how you’re going to die, though. I’ve been in end-of-life situations where the relatives brought in margaritas and we had a beach party for somebody who was dying because that’s what he always wanted. I mean, death is an inevitable process and if you’re able to come to terms with it and manage it well, it doesn’t have to be depressing.

4. What are the principles of good quality palliative care?

First and foremost, you have to do a good job of paying attention to, and managing, all the symptoms that a patient has. You also need strong communication skills to facilitate care planning for the future, and you need to be able to provide support for patients and their families as the patients get more and more ill and the burden of support is transferred more and more onto the family. Finally, you need to deliver on what you planned. Many times, we’ve seen people go down a palliative route and you can see it gets frustrated or broken at some point, for whatever reason. You need to deliver the care that you planned for.

5. How important is communication in palliative care?

Communication between physicians, patients and family members is crucial. It sounds easy, but it’s actually very challenging and it’s often not done as well as it could be. Often patients and family members misunderstand what’s going on in their care, and sometimes physicians are not aware of something that’s going on in a patient’s life. So turning facts and values into a plan can be very challenging. For example, you may know that the patient is suffering from an incurable illness and that their priority is quality of life, but you may still fall back to the pathway of very aggressive treatment, repeated admissions to the emergency room and that patient ending up on life support before getting a chance to express their desires not to have those. There are many important advances in technology and care that are going on, but these provide incremental benefits. What would have the biggest impact on our health-care system right now is simply the ability to get onto the same page with our patients and turn that into a plan.

6. How does your approach to care change as the cancer journey progresses?

My approach won’t necessarily change, but what I do for a patient may change. Our role should always be to support the patient and to try to make sure the care we’re providing them aligns with their values. I mean, when you’re first diagnosed with cancer, and there are curative options, most people will want to take those options, of course, and we’re very much interested in getting the patient the outcome they want. But my emphasis is on symptom management and on making plans for the future. Once the patient has progressed on the illness course and they’re no longer responding to therapies, then I might have a more frank discussion on the wisdom of continuing on the therapy because of the risks and the benefits. You don’t want to have the person taking therapies or going forward with a plan that has no realistic prospect of giving them their desired outcome. That’s my role, to help that person work towards their goal. Then, near the very end of life, symptom management is front and centre and planning shifts to the background. At that point, my role is to support the patient and their family members.

7. What are the top five things patients and their families should know about palliative care?

1) Choosing palliative care is not about choosing between life and death, it’s about choosing how you want to spend the rest of your life.

2) You don’t have to choose between quantity of life and quality of life. In fact, studies show that when you have advanced disease, choosing palliative care not only will improve your quality of life, but it may even improve your quantity of life—it certainly doesn’t shorten it.

3) Talking about it is good. Many people think that talking about bad news is a bad thing and it can harm a person to know that they’re dying. It’s really quite the contrary. When communication is handled well, it unburdens the patient and it’s good for them.

4) This is not so much about palliative care as it is about life: Nobody is going to live forever. The goal of medical therapy is to try to give you good quality life for as long as possible. But the goal for you should be to try to live your life as well as you can. Don’t get to the end of your life and have regrets about opportunities you didn’t take or things you didn’t say. The most tragic cases I’m aware of are when somebody dies of cancer without having had the chance to get closure with family members or to leave behind legacy items, letters, or stories that they wanted to tell people. That’s really what palliative care is all about, to try to give you the opportunity to do that.

8. What are the top five things doctors need to know about palliative care that they might not already know?

1) Every doctor can and should do palliative care. Symptom management, participating in good planning and communication, and providing good support to patients should be part of your skill-set.

2) Patients want to talk about end-of-life care. They want to talk about symptom management and they want to talk about planning for the future. In many cases, they want to talk about those things far more than they want to talk about therapeutic options. They’re waiting for us to bring these issues up, so don’t hesitate, thinking that patients and family members don’t want to take care of it or are afraid of the subject. It’s a subject that causes anxiety but it doesn’t mean they don’t want to talk about it.

3) Good communication takes time, but spending time communicating up-front saves a lot of time down the road. Many physicians will say they want to have good conversations with their patients but they just don’t have the time. My counter is if you spend a little bit more time up front with a patient, to establish a good model of communication with them, your subsequent meetings with them will probably accomplish a lot more in less time because you’ve established a rapport and the patient will know that they’ve been heard.