Physician Justine Farley on learning about palliative care on the job, the importance of having enough time to listen, and the need to question how our health care system can better serve patients
“Most patients and their families are really grateful for the care they receive and this tells me a lot. Over time, I have learned that patients are truly alive until the end.”
By Devon Phillips. When Justine Farley started working as a recently graduated family doctor in home care in the early 1980s, palliative care did not exist. Her exposure to dying patients led her to co-found the palliative care unit at the Centre d'Hébergement Notre-Dame-de-la-Merci. She was later recruited by Balfour Mount to join St. Mary’s Hospital and be part of Palliative Care McGill. With 40 years of dedication to palliative care, Justine has contributed a great deal including 17 years as the head of palliative care services at St. Mary's Hospital Center, professor in the Departments of Family Medicine and Oncology at McGill University, and co-president of the 2e édition du congrès international francophone de soins palliatifs in 2013. I met with Justine in her office at St. Mary’s Hospital Center in Montréal, Québec.
Q: So tell me about how your career in palliative care started. Was this something you knew you wanted to do or did it evolve?
A: When I started doing palliative care it was really at the beginning. My mentors were Marcel Boisvert and Balfour Mount. I started out in a CLSC doing home care and home visits and it was there that I had my first contact with end-of-life patients. This was in the early 1980s. Then I worked in a large nursing home– Notre-Dame-de-la-Merci – this was the place in Montreal where they used to send end-of-life patients and I worked there for 12 years starting in 1986. Along with an interdisciplinary team, I founded the palliative care unit there and then one day, Balfour Mount visited us and asked us if we wanted to be part of Palliative Care McGill. This was all in the 80s.
Q: What happened from there?
A: I knew Bal Mount a little bit before he visited us because there was this fabulous small meeting once a month on Wednesdays if I remember well, in the conference room of the Montreal Convalescence home. We had these meetings with Ina Cummings, Bal, Marcel Boisvert and few others. We would chat for half an hour and there was an hour presentation with invited speakers from among ourselves. This is how I learned about palliative care – from these meetings and on the job of course, because before this there was really no palliative care.
Q: You are a pioneer in palliative care, having starting in the early 1980s. After all these years working in this field, have you seen any changes?
A:Yes, palliative care is more scientific now. There is a major trend toward the speciality of internal medicine. I think this is good, but we should not forget our role as healers. When Bal and his group started, you know they were really questioning others within the hospital. I think we should continue to question about how we care for patients, and not just be specialists.
Q: What kinds of questions need to be asked?
A: We need to ask, “What do we do for the patients? What is important for patients? How can we meet their needs better?” The question I like to ask patients is, “What is your most important problem right now?” You know it is not always something that is physical. They might say that the most important thing on their mind is their son. They might say, “I don’t know how to tell him that I am dying”, and, “I am afraid of how he will react.” Or, they might say, “Who will take care of my husband when I die?” These are often the most important preoccupations patients have. Serge Daneault did a qualitative study showing us that almost 50% of patients’ suffering comes from the healthcare system itself- the delays, the attitudes of professionals such as doctors, and that is making me question a lot of things. I think we should be doing more for patients. We should be questioning our colleagues about these issues.
Q: So in your work, do you have patients telling you the problems they encounter with the healthcare system?
A:Yes, absolutely.
Q: If you had a magic wand, what are the key things you would like to see changed?
A: Most importantly doctors need to have more time with their patients. I know that this is not possible for everyone when you have 40 patients a day but still, do we need to see 40 patients a day? Maybe, maybe not. We have an oncologist here with a huge number of patients but when he sees that patients are really not well, he sends them to me and I make time for them. When he announces that there are no more treatment venues for them, he says, “Okay, go and see Dr. Farley”, and then we make sure I see them that same day, and believe me, it is the same day. So at least I can listen to them. Usually there is not much for me to tell them, but I can listen to them.
Q: So the oncology patient gets referred to you and you have a conversation with the patient. What is the next step?
A: We follow them here for awhile and at the same time they see their oncologist. We continue with the same PIVOT nurse and if they are known to a psychologist, the same psychologist, the social worker likewise. We stay with same team so we can follow the patient well. Because we are small here at St Mary’s, we can do this. This is important for patients. The same team takes care of the patient from the start of their illness all the way to the end. And because of our PIVOT nurses, we can have a bridge between the hospital and home care. Patients definitely benefit from this continuity.
Q: Am I right that St. Mary’s is a pretty special place?
A: Oh yes, I like to work here. It’s a nice hospital, not perfect, but many of our staff are concerned about the patients, and many people are still able to smile here.
Q: Is there good teamwork in the palliative care unit?
A: Absolutely! Let me draw a picture. So palliative care is on the third floor and my office is within the oncology clinic so I am really within the action. On this floor we have the treatment room and it is accessible for my patients when they need it for blood transfusions. There is the oncology room, which is the clinical part when we meet with patients. And on the Five Main ward, we have privilege for six beds, six patients. On this unit, there is also a cancer care ward so we have everyone, palliative care and oncology, in the same place. And you know in oncology when patients need to be admitted most of the time it is because they are close to being palliative. So typically we have six patients under palliative care and we also follow at least six patients in oncology, which is close by. We have a flexible, collaborative relationship with oncology. Oncology patients can benefit from palliative care and when needed, and we can use the oncology beds for end-of-life patients. What is nice for patients is that the team remains the same –it’s the same healthcare professionals, nurses, physiotherapists, occupational therapists and so on, and therefore patients know their team and they benefit from this. Even those in oncology benefit from the palliative care approach when appropriate, because the nurses know the basics of palliative care and all the patients have access to music therapy, volunteers, massage, manicurists. We don’t look at who is the treating doctor- we look at the needsof the patients first. It is very individualized. The caveat is that it is difficult to have a quiet floor like a palliative care unit. And people often remark how calm it is on our palliative care unit.
Q: Do you have challenges?
A:Yes, I would like to see more palliative care training for the nurses, this is important. And we have all the changes coming from the Ministry of Health, those will be big challenges. If I had any doubt about my retirement, the changes from the Ministry have confirmed my decision to retire and not have to live through that… we don’t even know what will happen.
Q: Given your experience, do you have any advice for a physician starting out in palliative care?
A: I would suggest that they take care of themselves. We cannot give what we don’t get. And we must listen to patients and their families. When patients or family members are angry, a new physician has to keep in mind that it is not because of him or her, at least most of the time. I mean we physicians must self-reflect, but most of the time patients are angry at life, not us. It is a difficult time for patients.
Q: How do you manage to take care of yourselfwhen you work with patients at the end of their lives?
A: Most patients and their families are really grateful for the care they receive and this tells me a lot. Over time, I have learned that patients are truly alive until the end when they die. It is very helpful to know this. And I am a person who lives a really stable life. I enjoy my two grandchildren and I enjoy when my children come to visit. This is important and I have worked hard for this.
Q:I heard that you are about to retire. Is that true or is it a rumour?
A: It’s true! I am retiring this autumn.
Q: What are you plans when you retire?
A: The first year I plan to clean my house and then in the second year, I will sell it, most probably! We’ve lived for more than 30 years in the same house! But I am planning on staying in Montreal. I am a Montrealer.
Q: Will you be involved in palliative care at all?
A: I think I will volunteer but not in a clinical capacity. I will help at the next International Congress on Palliative Care. I am also part of the Réseau de SoinsPalliatifs du Québec and I would like to volunteer but nothing of a clinical nature because I would not be able to mind my own business! I would probably keep trying to be a doctor and I would have to bite my tongue! I don’t want to do clinical work when I retire. It will be 40 years this year since I received my medical diploma from the University of Montreal. Also, I like to travel. I like to be open to the world.