Volunteer Carol Kahn from the Jewish General Hospital on the intensity of the end-of-life experience and the unique role of the volunteer in helping families
"The two most important things volunteers offer are listening and time,Ěýand listening takes time.”
By Devon Phillips. Carol Kahn is fascinated by people. After working as a social worker and career counselor, Carol started volunteer work at the palliative care unit at the Jewish General Hospital 12 years ago. Experience has shown her that being able to actively listen to people is one of the greatest and most useful gifts the volunteer offers, and being listened to serves as an important part of the grieving process for families.
Q: Tell me what you like about volunteering in palliative care. What draws you to it?
A: There are so many different kinds of people from so many part of the world, different walks of life, and that fascinates me always. And the other thing is that it is very "in the moment" -very right now, today, we are there together in the room. Half an hour from now or tomorrow, things will be different. So even when nothing very fancy happens, you just bring an ice cream or you find a newspaper for someone and it looks like it’s nothing but it’s not nothing, because in that moment that is what the person wants.
I started to do this at the Vic in 1980 but when my mother died. I was advised to take time off and then my life went in other directions. And when I retired, I thought I will go back to doing this. It’s mostly family members with whom I interact. The patients are often much too ill to interact very much. It is a very intense experience- it’s the family stories and the family's vigil and I think a volunteer can be very helpful.
If I walk into the room and someone seems receptive to having me stay, I will listen their stories. And when you really listen, people keep talking. And often those stories are part of their grieving. This is a place where life is coming to an end and people can often find solace in talking about what is happening to them. We know death is coming, but nobody knows when so there is a whole issue of helping people live through the time, live through the moments.
I find those days so intensely lived in the unit and I say that to families, this is such an extremely intense time. People are squeezing the last juice out of life.
Q: You mentioned the act of grieving. Do you think the grieving starts for the family at the time that the loved one is dying?
A: Yes, I think so. When they know death is coming. In fact, by the time the patient is on the unit, they are often close to death, maybe in a skeletal or totally bloated shape, and not communicating well, very tired, half there and half not, it’s visible. Every once in a while the patient lights up and is themselves briefly, but the family knows that they are losing this person so they are grieving. Occasionally patients stay in the unit for months and the family is there day in and day out and it’s a slow incremental loss. This last year there was a lady who was there for months and months in the hospital every day for her husband. Her whole life was in this bubble, on hold, and she does not want to talk about everything to her children or burden her friends, and she can perhaps unburden herself more easily to a volunteer.
Q: You mentioned listening being very important. What else does a volunteer bring to the end-of-life experience?
A: We have time. We can run down to the kitchen for apple sauce. We can deliver blood samples. We can feed someone who it takes an hour to feed because they eat very slowly and they fall asleep. I am not a friend, or family, or a medical person; I am just there to help in lots of little ways. I think every volunteer does the job in their own way. We are individuals, and so is each patient.
Q: Do you feel part of the team as a volunteer?
A: Our medical team, the nurses and the PABs value our presence on the unit. We are extra hands, extra eyes. I used to work on music therapy day and I could tell the music therapist that I have met a patient who enjoys music. Or I can let a family member or a patient know that a social worker or a psychologist is available. I can give information, but never advice! The two most important things volunteers offer are listening and time, and listening takes time.
Q: What is it that is ticking away inside of you that allows you to give this of yourself?
A: I have always worked with people and I am fascinated by who people are and their stories. There is another motivation - my mother was an invalid for many years with multiple sclerosis so I lived through her long slow decline of increasing disability and it informed who I am.
Q: It would seem that working with people at the end of life would require both bravery and skill.
A: Well I don’t know about bravery! People say to me, how can you be doing this? I say that I can do it because I am okay in my life. I have the strength to do it but the minute something comes too close, not only can I not do it, but I should not being doing it because my baggage would be in the room. And the skills – I worked for many years in the "helping professions" and I like to use my listening skills and I have the skills also to build the boundaries that you have to build. You need to know how to empathize without getting drawn in and hurting yourself.
Q: So for someone new to volunteering, would you have any advice for them?
A: I think they need to understand themselves and their own reasons for doing whatever it is that they want to do. We are the medium through which this work happens so unless you understand what’s going on in yourself, it’s very hard to be open to what is going on with other people who are in pain.
Q: But it is a curious thing - you could have chosen all kinds of different departments to volunteer in. Why palliative care?
A: A friend of mine at the age of 51 died at home but with the Royal Vic palliative care services and I was very impressed with how his dying was handled. Another reason why I chose palliative care is because it is a place where I had learned, in my training under Balfour Mount, that volunteers are respected and are integrated into the teams; we are treated professionally. There is a six-week training period and then you are mentored, buddied with a more experienced volunteer or volunteers for a period of weeks or months - you watch and you observe and you get feedback.
Q: So you were impressed with the early days of palliative care at the Royal Victoria hospital. Are you still impressed with palliative care?
A: Yes absolutely, definitely. I just read Atul Gwande’s book, “Being Mortal: Medicine and What Matters in the End” and I am impressed with what he says. Palliative care is so important when medical treatments don't work any more.
Q: In a nutshell, what’s the reward?
A: Oh God, I don’t know! But I keep going back! I do feel appreciated. There are moments when a person takes my hand and says thank you. And I learn so much. I watch the people and all of them are facing the same thing- someone is ill and dying slowly and painfully and there are many ways to live through this experience. It is never the same. Everybody has their own way of doing it and that’s why I go back.
Q: Looking ahead, will you keep volunteering?
A: I think so- my father lived to 93 so if I'm lucky, I still have time to keep on doing this!
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