Tag Archives: terminally ill

Encore! How Prepared Are You to Interview Terminally Ill Clients?

Life continually challenges us with the unexpected.  And only a fool would attempt to prepare for the unforeseen. It does help though to go into uncharted territory with our eyes open to potential risks. Interviewing terminally ill people for their life stories is  satisfying, worthwhile, and often moving work. Though it does come with precautions… Read more.

Encore! Are You Asking the Courageous Questions?

Marc Pachter founded  Living Self-Portraits at the Smithsonian and was its master interviewer.  In his TED talk below he shares the challenges of getting a good interview.

…if all you’re going to get from the interviewee is their public self, there’s no point in it. It’s pre-programmed. It’s infomercial, and we all have infomercials about our lives. We know the great lines, we know the great moments, we know what we’re not going to share, …

Marc recounts several interviews and how he cut below the surface conversation to have his subjects reveal the truth of their lives…Read more.

Are You Asking the Courageous Questions?

“The key point [of my interviews] was empathy because everybody in their lives is really waiting for people to ask them questions, so that they can be truthful about who they are and how they became what they are.”

Marc Pachter , Cultural Historian

Marc Pachter founded  Living Self-Portraits at the Smithsonian and was its master interviewer.  In his TED talk below he shares the challenges of getting a good interview.

…if all you’re going to get from the interviewee is their public self, there’s no point in it. It’s pre-programmed. It’s infomercial, and we all have infomercials about our lives. We know the great lines, we know the great moments, we know what we’re not going to share, …

Marc recounts several interviews and how he cut below the surface conversation to have his subjects reveal the truth of their lives.

Marc’s talk reminds  me of the advice I give to those I train for life story interviewing.  I tell my students they need to ask the “courageous  questions”. These are the questions that people have been waiting to be asked all of their lives. It requires courage on both sides. The interviewer must be confident enough to raise the questions. The interviewee must be unafraid to answer them.

Our work as personal historians, unlike  Marc Pachter’s,  seldom involves the famous. But the need to go beyond the pre-programmed responses is the same. How do we do that in a way that’s both incisive and empathetic? Here are some clues.

trust your intuition

Intuition is that ability of knowing without any rational explanation – a kind of sixth sense.  I’ve talked about this to some degree in a previous article, How to Listen with Your Eyes.

When we’re engaged in an interview, it’s not just the words we’re listening to but also the subtext. It’s the eyes that give us clues to what’s behind the words. Our subject may express happiness and contentment but the eyes are sad. We may hear kindness and openness  but the eyes are angry and narrowed.  If we’re doing our job well, we need to check out this dissonance with our interviewee. By listening with our eyes we unearth a richer more authentic story.

Trusting your intuition and blurting it out doesn’t mean that it’s always right. And that’s okay. People will set you straight if you’ve missed the mark.

As a rule, I generally preface my hunches with something like, “I have this feeling and I might be totally off base but I’d like to check it out…” [followed by the courageous question.]

With time and practice we can begin to trust our intuition and put it at the service of our clients.

Acknowledge the elephant

An elephant in the room can crush the intimacy from an interview. To help people express themselves and as Pachter says  “to feel what they … [want] to say and to be an agent of their self-revelation” we need to be fearless in acknowledging the elephant.

The caveat is that we must always be clear on our intent. We are the means through which people can speak unburdened. Our intent is not to embarrass, intimidate, or expose the interviewee.

For example, in my work I’ve found  that most of those at the end of life welcome an opportunity to talk about their fears and hopes. But I also know that  it’s not uncommon for friends and family of terminally-ill patients to avoid the subject of death altogether. While it’s perfectly understandable, such silence can leave the dying feeling even more isolated.

be curious

Curiosity is one of the key tools in an interviewer’s toolkit. It’s both playful and disarming.  The question begins  with “I wonder or I’m curious…” and invites an exploration between you and the interviewee.

Questions that are asked out of curiosity usually lead to responses that are authentic and deep.

For example,  after listening to your interviewee go on and on about their terrible childhood you might ask, “You’ve painted such a bleak picture of your childhood, I was wondering what were some of the good things that you can recall?”

Such a question stops the interviewee from the pre-programmed, infomercial described by Marc Pachter and gives the person an opportunity to dig deeper and uncover some bright spots.

conclusion

As personal historians we owe it to our clients to ask the courageous questions. One’s life story is more than a sterile recitation of dates, names, places, and events. Ultimately it’s about the complexity and richness of a soul’s journey. Courageous questions unlock this richness and give heart and substance to a personal history.

Photo by Pulpolux

Thanks to my APH colleague Pat McNees of Writers and Editors for alerting me to Marc Pachter’s TED talk.

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How Prepared Are You to Interview Terminally Ill Clients?

Life continually challenges us with the unexpected.  And only a fool would attempt to prepare for the unforeseen. It does help though to go into uncharted territory with our eyes open to potential risks.

Interviewing terminally ill people for their life stories is  satisfying, worthwhile, and often moving work. Though it does come with precautions. I’ve previously written about some of these in Interviews May Unlock Traumatic Stories. and 7 Essential Questions to Consider.

Now imagine yourself in the following situation.

You’re interviewing an 80-year-old woman, Rose, who lives with her daughter, Sandra. The daughter provides much of the caregiving. Rose suffers from a number of heart-related problems.

This is your third visit. The daughter tells you that she’ll be out doing errands while you spend the next hour interviewing her mother. Sandra assures you she’ll be back within the hour. It’s just you and Rose alone in the house.

About halfway through the interview Rose develops severe pains in her chest. She asks you to hurry and get her nitro pills in the kitchen. You find a tray with numerous medications but nothing labeled nitro.

Back in  the living room you  explain this to Rose. She suggests you call her daughter whose cell phone number is on a message board in the kitchen. But when you try to find the number, it’s nowhere to be found.

Rose is becoming increasingly agitated and calls out to bring the tray of medication to her in the living room. A number of questions race through your head.

  • What if she picks the wrong medication with calamitous results?
  • If something goes wrong, what should I do?
  • I’ll have to leave soon for an urgent appointment and Sandra hasn’t returned home. Should I leave anyway?

What would you do?

As a general rule, it is vitally important that as a personal historian working with a terminally ill person, you don’t begin to undertake caregiving tasks. You weren’t hired for this and indeed may put yourself and your client at risk if you step into such a role.

Having said that, you could find yourself in a situation similar to the one described with Rose. And with no one available to help, you may have to step in.

Some suggestions.

There are a range of possible responses, none totally satisfactory. But here are some suggestions:

1. If Rose is registered with a local Hospice, there may be a number you can call for just such a crisis. Someone there would have a list of her medications and be able to help you. If she isn’t registered with Hospice, then go to step 2.

2. Assuming Rose is clear mentally, bring the tray and ask her to point to the nitro pills.  Read out the name of the drug and ask if these are indeed the nitro pills. If she confirms they are, then allow her to select the bottle and  take the prescribed dose. Don’t select the bottle for her.

3. Stay by Rose’s side and monitor her progress. If she shows signs of recovery, you can breathe easy. If her condition worsens, call 911.

4. Assuming all is well, you still have an urgent appointment to keep.  Sandra, Rose’s daughter, hasn’t returned. And you feel uncomfortable leaving Rose on her own. Here’s what you might do:

  • Ask Rose if there is a neighbor who could come over and stay until Sandra returns. If there is, contact the neighbor and have that person come over.
  • If there’s no one who can come over, I’d opt to stay until Sandra returns. As urgent as your appointment may be, it is not worth risking someone’s safety. Call and re-schedule your appointment.

A final word.

One way to avoid the kind of predicament  I’ve described is to make certain that you’re never alone with a person whose health is severely compromised. Don’t allow a family caregiver to use you as a means to get out of the house. Pleasantly and firmly point out that your arrangement with your client doesn’t involve caregiving responsibilities.

I’d appreciate your responses to this scenario. Please post your thoughts in the comment box below. I promise to respond to each one.

Photo by jan van schijndel

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Monday’s Link Roundup.

In this Monday’s Link Roundup I have two favorites and both have to do with those who’ve experienced combat.  In One Pilot’s War the letters home of a WWII fighter pilot gives an immediacy and authenticity to the experience of  war in the Pacific. Bringing Home Veterans Stories to the Stage looks at an innovative theatrical production that uses oral history to capture the voices of veterans returning home.

**And don’t forget to vote on my poll: How long have you been a personal historian? Click here to vote.**

  • Two Very Different Approaches to Personal Stories. “What kind of story could you tell about yourself based on the contents of your pocket, backpack, handbag, or wallet? That’s the question that the Pocketology Field Research Unit explores on Stories You Haven’t Heard.”
  • Bringing Home Veterans Stories to the Stage. “The transition to the battlefield and back home again is a long and, at times, bumpy road for our war veterans. A new interdisciplinary arts and creativity project at the University of Kentucky brings a voice to these experiences. Through a unique collaboration between UK’s Department of Theatre, Veterans Resource Center and Louie B. Nunn Center for Oral History, the stories of the veterans among the UK campus community will come to life in a new documentary drama “Bringing It Home: Voices of Student Veterans.”
  • The Great American Scrapbook Conventions. “Whether you are an experienced scrapper or just want to learn more about preserving family stories, the Great American Scrapbook Conventions are for you. These events inspire and help you document memories for future generations to enjoy. You are guaranteed to leave more energized and knowledgeable than when you arrived!”
  • Multimedia Storytelling Reaches Technological Heights. “How do you tell stories with images” and then “how do you drive consumers to view your work”  were the two underlying questions of this fast-paced and never boring presentation-style workshop. Storm’s answer is to create complex multimedia projects using the documentary photograph as the root.”
  • Lasting Memory. “Oral histories give the terminally ill a chance to record their life stories. When 69-year-old Silvia Marie Clark Linville of Grants Pass found out two weeks ago that she had terminal, fast-spreading cancer, she got a gift from an unexpected source. As he has done for many dying people, Gary Halliburton gave her an hour to talk over the fun, painful and sometimes glorious parts of her life, which he recorded on high-definition digital video, with many copies on DVD for her children and their eventual children, who — not yet being born — will have no memories of their grandmother, but will get to “meet” her through this oral history.”
  • Building Credibility: 11 Ways to Show You’re a Professional. “Winning a job in the freelance world often comes down to who is the more credible and more professional candidate. It’s a sad fact, but many freelancers are inconsistent with their customer service and underwhelming with the quality of their work.”
  • One Pilot’s War. “Several months ago, the basement at my mother’s house flooded. As we cleaned up after the water receded, we found several boxes that had not been opened in many years. In these boxes were letters sent by my grandfather during World War Two . . . I have recently begun sorting and transcribing these letters so that they can be preserved for my family and for anyone else that my have an interest in how World War Two looked to one American pilot. As I work my way through these letter I will be posting them here along with the many pictures my grandfather took throughout the war.”

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How to Interview Someone Who Is Terminally Ill: Part One

Over the years I’ve recorded the life stories of a number of terminally ill people. I’m also a Hospice volunteer. I’ve learned some things through my work and hope these tips may be useful if you’re  working with someone gravely ill.

  • Negotiate how much time your subject feels he/she can handle in any one interview.
  • Carefully monitor the strength of your subject while conducting the interview. If you sense he/she is fading, ask if you should stop or continue.
  • People at the end of life can’t always be at their “charming best”.  If you find that you’re sometimes met with sharpness or even anger, don’t take it personally. It’s not about you.
  • Be calm and mindful with a terminally ill person even if you’re not.
  • Time is of the essence. Cover the most important topics first. You may not have time to complete the whole story.
  • If you can’t find a quiet space and must be in a room with others, check with your subject about confidentiality. He/she may feel uncomfortable talking if others can listen in.
  • Some medications can make people forgetful so make sure you know what material you’ve  covered. You may need to remind your subject that he/she has already spoken on a particular topic.
  • Your subject may have difficulty hearing. Remember to sit close  – no more than 3 feet away and to speak clearly and with sufficient volume to be heard.
  • Be flexible. Don’t be surprised if an interview session you’ve arranged has to be canceled at the last minute. A terminally ill patient’s condition can change dramatically in a short period of time.
  • Take care of yourself. Working with someone who is dying is emotionally draining. Make sure you do things that bring you nourishment and strength, such as listening to your favorite music, meditating, doing a vigorous workout, or taking a long relaxing bath.

Photo by kenna takahashi

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