Palliative care nurse consultant Francine Venne on working with families, respecting the rhythm of patients at the end of life, and the importance of an open approach
鈥淭o do this job, you have to be realistic because you cannot change things. And you have to be able to ease and facilitate the relationship with the patient and the family, reassure them. People need a lot of information. At the end of life, they are going into the unknown.鈥�
By Devon Phillips. Francine Venne retires this December from a long and fulfilling career as a nurse consultant in palliative care. Francine has played a key role as a dedicated professional who skillfully helps transition patients to the environment that best meets their needs, whether it鈥檚 home, a hospice or a hospital. 聽She is full of wonderful contradictions- she hates planning ahead, preferring to operate in the moment and to rely on her instincts, yet is down to earth and practical in her approach to ensure services are in place for the dying and their families. I met with Francine in her office in the palliative care unit at the Jewish General Hospital in聽Montreal.
Q:How did your career in palliative care get started?
A: I started working in palliative care in 1976. I started by accident. I was working at the Montreal Convalescent Hospital. We had 21 patients on that unit with terminal illness, but it was not officially palliative care at that time. I was 23 years old and I had never seen a patient die in my life.聽
Q: What were those first experiences in palliative care like?
A: I remember that I had a patient who really affected me a lot early in my career. It was a lady about my mother鈥檚 age at that time, and she had a son my age. She knitted me a hat and I was making little things to decorate her room. I took my breaks with her. When I came to work and found that she had died, I had a big reaction and I felt like I didn鈥檛 want to work in palliative care anymore. It was a co-worker who helped me through that and look, I am still here. I have learned a lot from patients, families, and from my co-workers.
Q: How did you get started at the Jewish General Hospital(JGH)?
础:听I arrived at the JGH in 1986. Barbara Anderson, the nurse consultant, was pregnant and she wanted to come back only one day a week. 聽So they created a new position and I got the job because of my experience in palliative care. 聽In this practice, there was no doctor, only one nurse. I was doing everything, even suggesting medication for pain relief, calculating the doses for the medications. I learned a lot on my own at the JGH and I am still learning.
Q: You were part of the establishment of palliative care in Montreal.
A: Yes, I witnessed the growth and transformation of palliative care. We had a solid team at the JGH that provided pain and symptom control and education. When I came to the JGH there was a committee with different professionals who wanted to improve patient care for those at the end of life, and this was how Dr. Dworkind (now the Director of Palliative Care Home Care) came on board. We started bit by bit, the team grew. Dr. Chang joined the team and then an actual palliative care unit was formed. 聽It was always me who took the calls for consultation whether it was from inside or outside the hospital. Calls could come from the oncology clinic, emergency, any care unit 鈥� the calls were for聽pain control,聽symptoms relief, working with families and also to develop the care plan 鈥� would the patient return home, be transferred to a hospital, or to palliative care. 聽We did a lot of work with families. For example, when the patient wished to go home we worked with the family, the doctor from the unit, the unit social worker; we liaised with the whole team to make it happen.聽
Q: How do you work with patients and families in determining a course of action?
A: I always sit with the patient, with the family, to find out exactly what is happening. When the son, the daughter, the father, everyone, hears the same information at the same time, then we can make decisions together.聽I discuss what is happening with the patient at the time, what the goals of treatment are, and we discuss the care itself since is it possible that there might be a return of symptoms or a crisis. It鈥檚 hard on the family to talk about these things. There is always one member for whom this news is a shock; they have not faced reality.聽And we look at the available resources. I work a lot with the CLSC, the nurses at NOVA, The Palliative Home-Care Society of Greater Montreal, because it is important that patients and families have help at home.聽Patients always want to be at home, but the question is 鈥� is it realistic? If it鈥檚 a women, 80 years old, all alone, or even with a husband, it may be too much. 聽You have to have a Plan B so that the patient doesn鈥檛 get bounced back to the emergency room since that is the worse place to end up.
Q: So you have a big role meeting with families, with patients and coordinating all the consultations.
A:Yes and my role has changed many times. 聽At first, I was on the floors mostly to re-evaluate symptoms but now I am often found in my office because I am doing all the liaison work by phone, a lot of work with the community, and with the CLSC. But it depends. 聽Yesterday I spent a聽lot of time in emergency. I never know how the day is going to go!
My role is really planning for patients going home, so it鈥檚 intense. Sometimes we have dying patients who want to go home and I have to make things happen very, very fast, because it can be a question of days.
Q: What have you observed about people鈥檚 feeling about death?
A: Because very few of us die at home like in the past, death makes us afraid, and young people especially have no idea what to expect. People are afraid and feel powerless.
It is every important that we explain what will happen and that it is normal. I explain that it鈥檚 normal for a person at the end of life to stop eating. I give family members little tips to help-lower the bed railing and bring your chair up close, bring the children if they want to come. You need to teach and encourage the family members because people feel so helpless and these little things make a big聽difference.
Q: What are some of the challenges you encounter? What would you like to see changed?
A: Oh la la! I would like patients to be referred much earlier. People are afraid of the words聽鈥減alliative care.鈥� 聽I never say, 鈥淗ello, I am from palliative care鈥�. Instead I say, 鈥淚 am Francine and I was asked to come and see you鈥�. I talk about pain control, quality of life and comfort. I don鈥檛 always know if patients really know about their illness- have they actually pronounced the word 鈥渃ancer鈥� or not? In some families, there can be a conspiracy of silence. So I ask questions to the patient and family and their responses guide the interventions.
What is most difficult for people is the transition between curative treatmentand palliative care. People have very little time to make this transition and often they are not referred early enough to palliative care so that when they arrive, they are not prepared. Some patients ask, 鈥淲hy do I need to come here?鈥� I find it鈥檚 very important to talk to people gently, thoughtfully.聽
Q: Are there enough resources in the community?
A: Short answer- no. We don鈥檛 have enough doctors at the CLSC. Also, we do not have people who can come and help families during the night so that the families can keep their loved ones home. Caregiving demands a lot of people.聽We need concrete resources, like someone to come in to bathe the patient. If the patient is incontinent then the family has to manage this, not everyone is comfortable with this. I may be comfortable taking care of my father, doing almost everything, but I may not be comfortable changing his pull-ups.聽
Q: What do you learn from your patients?
A: I have learned to make the most of my time with the people I love. 聽Don鈥檛 wait to tell people you love them. 聽You know it鈥檚 very hard to see people change but when we have the possibility to say goodbye to the person, this is a privilege.
Q; Are there surprises in your work even still?
A: Oh yes! Every family has their own history and culture, their own beliefs. You have to take an open approach and be very respectful. Sometimes you meet people who are very cultured, intellectual and all that, but emotionally, it鈥檚 very difficult. 聽On the other hand, I meet people from more disadvantaged backgrounds but they are at ease with life and their view of death is more realistic. I have observed that the more sophisticated we are, the less at ease we are with death and dying. This always surprises me.
Q: Montreal is so multicultural. What has the experience of working with families from very different cultures been like?
A: Here at the JGH, we have people from everywhere, people who do not speak our language, people who have very different belief systems, and some have just arrived here. This is the school of life. 聽We need to ask lots of questions at the end of life. We can never assume that the customs of the families you are working with are the same as yours.
Q: You speak about palliative care as a very special type of care. Why is that?
A: I have always loved what I do because I find the people here do not wear a mask. To work in palliative care means you work with sincerity, and you work in the moment. We cannot leave things for tomorrow or for the day after because we never know what will happen tomorrow. 聽There are smiles along the way and kind words and moments of relaxation with the family. This is special.
Q: You are just about to retire- congratulations! What advice would you like to give to the person who will replace you?
A: Good question. 聽It takes spontaneity to do this work. But you have to have a gentle approach and learn how to assess the situation. You have to always respect people鈥檚 rhythms and be open to discuss their fears. I rely a lot on my instincts in my work with the dying; I am not one for theory. And when we are touched my patients, we need to talk about that as well. There are patients we connect with more than others, we need to recognize that, and understand that crying is allowed. We are human.