Part Two: Life Stories and Palliative Care: Your Questions Answered.

This week I continue with answers to the “burning questions” that  participants asked in my workshop, Life Stories as Healing, at the Association of Personal Historians conference. You can read more questions and answers in Part One here.

What event or events in your life made you decide to do this work?

I find it’s often difficult to determine at what point an idea begins to germinate. I know that when I was thirty-two, a dear friend died in a car crash. I had seen her just the day before. She was a vibrant and compassionate individual and then she was gone. From that moment I knew that “death” was a companion on my journey.

However, it wasn’t until two decades later as a documentary filmmaker that I shot, directed, and edited a series for the National Film Board of Canada, entitled Bearing Witness. It followed three individuals who were living with a terminal illness.

As part of my research for that series I spent time at Victoria Hospice talking to nurses, counselors, doctors, and volunteers. I admired and I liked these people. I decided that once I had completed the series, I wanted to become a Victoria Hospice volunteer. In 2005 I completed my training and I’ve been working there ever since.

If you have only weeks to capture the essence of a patient’s life, do you invite the family to finish telling the story?

So far most of the patients who agree to our Life Stories interviews have only weeks to live. If we have six or seven weeks, we can usually record up to five hours of a person’s life story. If it looks as if time is running out, we may skip to topics that the patient feels are crucial.

The Life Stories interviewer always works with a patient to determine what that patient wishes to record. In some cases it’s a personal history from birth to the present. For others it might be a Legacy Letter or Ethical Will. It varies.

We haven’t  invited family members to complete a life story. They are usually too emotionally exhausted to consider such a request.

What do you do if you as the interviewer begin to cry?

As an interviewer I’m a human beings with feelings. The stories I hear have moments that are sad and I feel sad. I try to keep in mind that this is my subject’s story. It is not about me. I don’t want to start crying and have the attention shift from my subject to me.

There are times when what I hear  makes my eyes moisten and I express my sorrow at my subject’s plight. But I keep some reserve in that moment. I save the tears for later when I’m home and can receive the support I need from my partner.

Should one raise or not raise the issue of death?

I wish I could say that there’s one rule fits all but so much depends on your subject and the rapport you’ve established. Some patients want to talk about facing death and others don’t. What is important is to judge how comfortable you yourself are with death and talking about it.

I have asked some of my palliative care clients what they fear about death and in most cases they are quite open and honest with their reply. We need not shy away from talking about death but we must be sensitive to the needs of our clients.

Are men reluctant to discuss emotional issues? If they are, should the interviewer draw them out or respect their reluctance?

Male aversion to emotional issues is something of a generality and quite often true from my experience. Men prefer to talk about what they’ve done and where they’ve been than get into “messy” emotional stuff – not all men but a good number. In fairness though, to be facing your imminent death is tough and raises all kinds of feelings – anger, fear, grief, and panic. I’ve had some men and women who’ve made it clear to me that the only way they can get through the interviews is by avoiding highly charged subject matter. I respect their wishes.

When shown respect and compassion it is not uncommon for men to go from a reluctance to talking about emotional matters to being quite open about their feelings. A word of caution. As personal historians we are not  therapists. It’s not our role to make people feel better. That’s for the professional counselor. In fact we all need the names of several counselors we can refer our clients to, should the need arise.

Has pain on the part of a patient in palliative care interfered with your ability to help a person to tell their story?

For the most part pain is usually managed reasonably well  by the time we start to work with a patient. However, there are other issues that can make it hard to record a person’s story.  People can become drowsy or at times muddled from the effects of their disease and medication. There can be bouts of nausea. Overwhelming fatigue can render people speechless. In these circumstances we wait until the patient has recovered sufficiently to continue. Sadly, in some cases, there is no recovery and the patient’s story remains incomplete.

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Photo by Derrick Tyson

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