PORTRAITS IN PALLIATIVE CARE
Psychologist Marie Solange Bernatchez on supporting dying patients and their families
“ Palliative care is not only about dying, it is about quality of life. Our team works hard and we love what we are doing. Patients and families often say, this must be a very hard job, hard for you. And I always say, we choose to do this, no one is forced to work in palliative care .
You cannot do palliative care if you are not passionate about it or if it is something that you are afraid of.”
By Devon Phillips. Marie Solange Bernatchez, Psychologist at the Montreal University Health Centre (MUHC), Glen Site and Lachine Hospital, believes strongly that recognizing the dying person for the whole of who they are supports dignity at the end of life and helps both patients and family members navigate the often difficult and uncertain end-of-life journey.
Q: Tell me about your role as psychologist in the Psychosocial Oncology Program at the MUHC.
A: I got my license in February 2018 and right from the beginning I worked in palliative care. Families are as important as the patients. I am here for patients and family members who have psychological or coping difficulties, and also to help patients maintain their dignity. We know that when you are near the end of life, you will feel that you are losing parts of yourself at a certain point. Patients and families need to feel that we are caring for the whole human that we have in front of us, not only the person with illness.
Part of my role is to help the patient and the family feel that they are still a person who deserves to be treated with respect and dignity. That’s why I talk with the person about what they did in their life. People have had such interesting and unique lives, and now that they are going through a difficult time, is very important to talk about what was meaningful for them in their life.
Q: What is your approach to these conversations?
A: Patients often feel the need to review their life, including what they learned from the difficult moments. My goal is not to fix everything, but rather to help them go through this journey with dignity and to recognize the whole person that they are.
This also helps the family because unfortunately many patients arrive on the palliative care unit unable to communicate. It is not easy for the family to see their loved one in this condition. Family members will often say, “this is not the person that I used to know”, so that’s why I like to have a conversation with them. I ask them to tell me about this person. When I do this, I will often see a smile. The goal is to connect. The end-of-life journey is difficult but in the grief process, the person will reconnect with those great memories of their loved one.
I also work with grieving people to help them to connect with all the memories they have of their loved one, and not just the memories at the end of life, which can be difficult or even traumatic memories, because unfortunately not all deaths go well.
Q: Can you explain what you mean when you say you help patients at the end of life maintain their dignity.
A: A psychiatrist in Winnipeg, Dr. Harvey Max Chochinov, did a lot of work about how to preserve dignity in patients when they are facing an advanced disease. His research is based on many interviews with patients, where he asked questions like, what is the most important accomplishment in your life, what are you proud of, what was more challenging and what did you learn from those challenges, what values do you think you transmitted, what wishes do you have for your family, and so on. Asking these questions help people. When families or the patients open up about their lives, it such a privilege for me.
Q: The way you describe dignity seems like a way to honour the person and it sounds like this brings you joy.
A: Yes! I really like to do this. For patients with psychological difficulty, I need to have a lot of tools in my toolbox. However, one of the things I prefer most is to just to talk with the person, to know the person that I have with me. One of my strengths is to establish good contact quickly, because in palliative care, I never know how long I will be able to see the person.
Q: Tell me about your interdisciplinary team approach. I understand that this is an important part of palliative care.
A: I chose to be a psychologist in palliative care because I don’t want to be alone in my office. I could never be a psychologist in private practice, I would go crazy!
We work together in palliative care. On the team there are the doctors and nurses and they provide a lot of support as well. I am here during the week, but there are evenings, nights and weekends, so it is not just me who supports the emotions; it’s everyone on the team. It’s just that we have patients or family members who are struggling more and we need to understand their needs, so I am there to help the doctors and the nurses to improve the communication and rapport. We also have our PABs (personal support workers) and we work closely with the spiritual care counsellor. There are also a lot of complementary services in palliative care such as music and massage therapy. We all put our strengths together to help the patient and the family the best we can. We are not there to judge but to understand and help.
Q: What are some of the benefits of psychological support at the end of life?
A: I help patients and families adapt in a really difficult situation. There is a lot of uncertainty at the end of life, and humans do not like uncertainty, so we need to help patients navigate through this. My goal is never to remove all the sadness and suffering because these are normal emotions but to help the patient and the family make space for these emotions. We live in a society where it doesn’t feel right to have these emotions and we need to tell people it’s okay to feel this way. Here it is a safe place where you can feel sad, you can scream if you want. As long as you respect me, you can do what you need to do to express your emotions. I am here to support you so you are not alone.
With families, my role is also to help prevent the development of complex and persistent grief. I help people to be in contact with their emotions and offer appropriate support.
Q: People talk about having a good death. What does that mean?
A: First of all, the idea of a good death is from popular psychology where we talk about having a good life meaning being happy all the time. This is not possible. It’s the same with death. I feel the person will die in the same way that they lived their life. Thus, it’s rare that a person will completely change at the end of life. It can be hard for a family member who is expecting the relationship with their loved to change in a positive way because they are at the end of life.
It’s better to recognize the person before us and help the person to be themselves. I remember a lady I met on the ward whose father had been diagnosed with advanced cancer a month before and everything was going so fast. She said, “what can I say to my father? It is the last time that I will see him because soon he will have deep palliative sedation.” And I said, “just be yourself, be your father’s daughter, talk about what you would normally talk about.” I have been following this person through her grief. She said to me, “I still think about your words, they helped me a lot. The last conversation with my father was great.”
Q: So you can have a good death. Can you have good grief?
A: For sure. A lot of people will grieve normally, meaning they will grieve in a way that will not affect their functioning over a long period of time. Grief is different for everyone and grief takes the time it takes. Most people will go through grief without any professional support. They will just live their emotions. At first it is a big shock, it feels unreal, and this is okay, and then you will be more connected with sadness, anger, guilt; this is all common in grief. Many people experience mixed emotions but in time return to their routine. They will be able to grieve and continue life. This is what we call “normal” grief.
Complex and persistent grief could be related to an historic or current psychological difficulty as well as to other factors like social isolation. When we see someone who is very depressed at the start of the grief, this is a factor that can complicate the grief process. The grief will last longer and it will take more time for the person to return to their normal function.
Q: Has the advent of COVID-19 have an impact on how you are able to interact with patients and families and how they are able to manage?
A: The past few months have been more difficult, for patients and families for sure, but also for the palliative care team because we are not on the unit together. It’s been hard on our spirit. We have to limit visitors; it is only four different visitors per patient so if you have a wife and four children, one of the children cannot come regularly at bedside. This new situation will have an impact on grief especially for a family member who is not allowed to be there for their loved one. There is no one way to accompany a loved one at the end of life. We respect and encourage what the family feels they need and we know this approach helps a lot afterwards in the grief. But now it is not possible to work with our usual tools. There are family members coming from other countries and for sure you can do Facetime and phone contact but it is not the same. But families understand the situation and they respect what we have to do now that there is COVID.
Q: What about the impact of the pandemic on bereavement?
A: Because we can’t even have funerals at this time, I encourage family members to find their own ritual. I know a family member who likes to walk in nature. That is where that she feels close to her mother. So she walks by a stream and lets her thoughts go. It doesn’t have to be something big or complicated but just something personal to honour the person you just lost. When you have a funeral you have support from a large community. I feel that when funerals are again allowed, it will be important to hold these ceremonies even if it’s not with an urn or with the body, even if it’s not religious, but to be together to honour the person, share together and support each other.
Rituals are so important in the grief process. In North America, we have lost a lot of our rituals regarding death and this is having an impact on the way that we are grieving as a society and now with the pandemic, it is affecting us even more. So I encourage small rituals and then eventually a more important ritual to honour the person.
Q: It sounds like you and your team have been very creative in helping people to adapt to end of life both as a normal process but also end of life in our new reality of the pandemic.
A: We do our best! Sometimes we feel powerless but are we creative in palliative care? Yes! Everything that is possible to do in a hospital, we will do! At the Lachine Hospital the other day, even though children are not supposed to visit because of COVID, we were able to negotiate a visit by a 5-year-old boy to see his grandfather. Our team cares very deeply for our patients and we do all that we can.