Palliative care nurses Marie Seguin and Mary Jane Barnes on special moments at the end of life and how working in palliative care is a privilege
“We’ve all learned how to start IVs and do various procedures, but our job is really about connecting and helping people cope.
We are arms of comfort; we are hugs.”
By Devon Phillips. Marie Seguin and Mary Jane Barnes, both nurses with 32 years of experience, have worked the night shift in palliative care since 2011. Marie and Mary Jane exude warmth and compassion in addition to professionalism. My conversation with them was marked by the laughter of two friends who often finish each other sentences, share a deep respect for their patients and an obvious enthusiasm for their work. I met with Marie and Mary Jane (MJ) at the MUHC in Montreal.
Q: I understand the two of you are good friends and you work together on the night shift in palliative care. What’s it like working permanent nights? When do you sleep?
Marie: I work both 8 and 12 hour shifts, usually 7:30 to 7:30. I’m a night person. I get about five hours of sleep, six if I am lucky. If for some reason I have to work days, then I need two alarm clocks. I would be all upside down.
MJ: I usually work the 12 hour shifts. I chose nights to have more time with my family. I have been working nights since my eldest was born, 24 years ago.
Q: What’s the atmosphere like on the palliative care unit at night?
MJ: It’s calmer at night, a slower pace. We try to keep a relaxed feel, day or night. We don’t want patients to feel rushed. People think patients just sleep at night, but it’s a time when they can be alone, reflect on their situation, express their thoughts and fears, and hopefully be heard and supported.
Marie: I prefer nights because we can spend more quality time with families. After the craziness of the early evening, giving out meds and everything, we can be more available to those in need of support.
MJ: Some people think a palliative care unit is all doom and gloom, but it can be a very joyful place. There are often moments of laughter between nurses, patients and families, once they are comfortable, and there is trust. The people here are living in the moment and very bit of care is valuable.
Q: What’s it like for the two of you to work together? Do you support each other?
Marie: Absolutely, particularly with the staff shortage. You have to know that you can count on the person you are working with.
MJ: I agree. At any given time there could be a patient that requires extra care. You see what needs to be done and you just do it, no matter whose patient it is. Sometimes we don’t even have to say anything.
Q: How long are patients generally in the palliative care unit?
Marie: It varies, anywhere from a few hours to months. Some come for symptom control and are able to return home. On occasion, patients are able to receive home passes.
Q: Did you choose to work in palliative care?
MJ: It was absolutely a choice. My first exposure to palliative care was in 1995. I was with my grandfather the night he passed away and this experience led me to palliative care. Interestingly, I was only two weeks into my orientation in palliative care when I had to take a leave of absence to care for my dying father in Ontario. I had great support from the staff here, at one point spending an hour on the phone with Dr. Vigano, one of our wonderful palliative care doctors, who gave me advice on palliative treatments. This was invaluable “on the job” training. The experience confirmed that this is where I wanted to be.
For me, it really is a privilege to be with the dying. It is a deeply profound and moving experience.
Q: Marie, what brought you to palliative care?
Marie: I did my training at John Abbott College. In my second year, I saw a documentary on palliative care at the Royal Victoria Hospital and I knew instinctively this is what I wanted to do. There was an opening in 1988 at the palliative care unit at the Ross Pavilion. I worked there until 1990, then left to go work on a medical floor to gain more nursing experience. But after 8 years, I realized I missed palliative care, so I came back. For me, working in palliative care is a privilege.
Q: You both mentioned that working in palliative care is a privilege. What do you mean by that?
Marie: Patients and families confide in us about what is truly meaningful to them. They trust us enough to share their innermost feelings. To be let into their lives in such a way is very much a privilege.
Q: Tell me about your role as palliative care nurses.
Marie: In addition to caring for the patient’s physical needs, we work towards making them comfortable both mentally and emotionally. We also provide a lot of reassurance and education to the family.
MJ: We always hope that patients and families have enough time to benefit from our extensive support system. We have an amazing team with psychologists, music therapy, aromatherapy, massage therapy and spiritual care. In addition, we have a wonderful group of compassionate volunteers to support patients and families. They offer activities like a weekly wine and cheese or afternoon tea. We take care of the family as well as the patient. To us, they are one.
Q: What have you observed about the experience of families accompanying their loved one at the end of life?
Marie: It’s a very scary time for families; they don’t want to lose their loved one or see them suffer. Patients tell us: “I am not afraid of dying. I am afraid of how I am going to die.” They are concerned about the possibility pain, shortness of breath, and other forms of suffering. We can alleviate some of these fears by explaining how we can control these symptoms and that we will be there for them whenever needed.
MJ: I agree completely. The idea of losing a loved one or seeing them suffer in any way is devastating. I find it helpful to always be mindful of moments, of capturing something meaningful to hold onto.
Q: What do you mean by “moments”?
MJ: For example, one evening a patient’s wife said jokingly, “I just wish I could get into bed with my husband.” My response was, “If it will bring comfort to you or your husband, that’s what matters. We can make it happen.” When I returned to reposition the patient, she agreed to lay with him for a short while. We made some space for her on his bed and she ended up falling asleep by his side for over 4 hours. This brought their daughters to tears. He died the next day. It meant a lot to her to have this moment with her husband. The two had not slept together in the last 3 months because of his illness.
Q: It sounds like this work requires being very attuned to the needs of the patient and the family.
MJ: As nurses we need to keep our eyes open, because there are nuggets of opportunity that are there all the time; we just have to tap into them. We say, “How can I help make it a little bit easier? We are here, tell me what you need. I have piles of pillows, hot blankets and coffee.” These are the small things that can provide much needed comfort. This is what palliative care is about. It’s about the small things.
Marie: We tell families that we cannot change what is happening to their loved one, but we can change how it takes place. We do our best to ensure patients are comfortable and not suffering. We have a universal prayer that we can offer when people die. It is not religious, but it’s a way of saying goodbye at a time when families are struggling for words. It can provide great comfort and closure to both the family and the staff.
Q: Have you seen changes over the years in the way palliative care is delivered?
Marie: There are fewer nurses for the patients now.
MJ: When someone is holding your hand asking you to stay with them, you have to make the time for them as this is a priority, but it can sometimes be a struggle because of the demands in the unit. We do our best.
Q: Both of you seem very content with your work. Does it take a certain kind of person to do palliative care?
MJ: It is not for everyone. Palliative care is deeply rewarding knowing you could make a difference to someone going through some of their most difficult moments. I feel as if we were meant to be here.
Marie: That’s very true, and it is a specialty. At the end of the day, no matter how challenging it is with all the cutbacks, this is still the best job you could ever do. All the feelings here are real, and that’s what I love.
Q: What is on your wish list for palliative care?
MJ: More palliative care beds. Many families are struggling at home, feeling overwhelmed and guilty that they can no longer handle the increasing health care needs of their loved one. In addition to managing the patient’s physical needs, we also help to relieve the pain and psychological suffering and offer support to both the patient and family. By taking on these responsibilities, families are free to share something truly precious: time to be with their loved ones.
Marie: I wish we had better staffing. Too many dying people and their families are not getting access to the support they need.
MJ: People deserve to have access to palliative care. It makes a difference to both the patient and to their family to feel safe and supported throughout this extremely difficult time.