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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5 Responses to How Prepared Are You to Interview Terminally Ill Clients?

  1. Wow, Dan, that’s some serious stuff to think about. Several of my clients have been terminally ill, but I hadn’t considered the risks involved when I was alone with them. My inclination would be to call 911 if I couldn’t find a phone number that worked, either for the daughter or for Hospice.

    I’m glad you offered several suggestions on how to handle the situation. Wonderful food for thought.


  2. Catherine Close

    Thank you for another wonderful post. I have been reading you for awhile but this is my first comment.

    Working with those at the end of life can be the most rewarding work of all but these kinds of situations need to be both anticipated and planned for. This is where I am really glad for my experience as a hospice volunteer. If a client has declined to the point where she has to live with a caregiver I follow the rules I learned as a volunteer: (1) make sure I can get in touch with the caregiver if she leaves; and (2) that I have an emergency number. As to leaving the client alone when I leave, this is something that really needs to be worked out with the caregiver ahead of time. If the caregiver believes the client can be alone the caregiver needs to fully understand that I am leaving at the exact time I say I will. Lateness happens but only once!

    I agree the PH is not a caregiver. However, I prefer being alone with the client/story teller and so don’t mind doing a little care giving to give the caregiver a bit of respite. I like to make sure the story teller has something to drink and am glad to fetch water or whatever and I have helped clients use the bathroom. Sometimes a little break for care giving is just what is needed for the success of the interview.

    Each situation is different in so many ways. Some caregivers will take advantage, others need to be encouraged to stop hovering. Sensitivity and flexibility are the order of the day.

    • @Catherine Close. Thank you so much for your comments, Catherine. Your points are well taken. I ‘m also a hospice volunteer and find it helps me in these sometimes tricky situations. Being alone when you’re interviewing is preferable in most cases. I usually ask the caregiver to retire to some other room in the house and to keep as quiet as possible. There are no hard set rules when it comes to interviewing a terminally ill person. I would absolutely agree with you that “sensitivity and flexibility” are key.

  3. Dan, as a former nursing sister, if faced with the situation you have outlined, I would arrive a little earlier and run through an emergency situation with the carer eg
    write down her mobile number in your notebook,
    have the bottle of nitro pills nearby (seconds can make a huge difference in an emergency),
    have the neighbour’s number and also the nearest medical facility’s number written in your notebook.
    By noting down these details before the carer departs, the personal historian is well prepared, should an ememrgency arise. I have often found that just by being prepared, somehow the emergency doesn’t arise. It’s also handy to carry one of those little emergency first aid cards which outlines the ABC procedure
    1 – Airway – is this obstructed & if so, clear it.
    2 – Breathing – start mouth to mouth, 6 breaths if person is not breathing
    3 – Cardiac – check for a pulse & apply 2 cardiac pressure pushes.

    Being preapred beforehand is always the best way with a frail client.

    • @Annie Payne. Thanks for the great advice, Annie. Where possible I think it’s still useful to have the caregiver present – not in the interview room but somewhere in the home. I think it’s very important that personal historians be clear about boundaries. We should not let our sensitivity and concern lead us into caregiving activities. The risk to ourselves and our clients is very real. For example, what happens if your client needs to use the toilet and requires a transfer to a wheelchair? Unless you’re knowledgeable about lifting and supporting someone you could injure your back. And your client could end up flat on the floor. Only in extremely rare situations would I agree to being left alone with a client whose health is severely compromised.

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