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My Interview Is Up Now!

https://www.itsabouthowyoulive.com/katherine-arnup/

My interview for the summit is available now. Just click the link above. (Sorry to those who received an earlier message without the link!)

 

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I thought readers might be interested in checking out a FREE telesummit I’m participating in.

I am one of the experts participating in a free Telesummit called It’s About How You LIVE.

The Telesummit features 21 experts who will help you take the fear out of conversations about advance care planning, serious illness, hospice care and grief. Are you a medical professional? Caregiver? Just want to learn more about these important topics? Then this is for YOU!

Register Here!
https://www.itsabouthowyoulive.com/katherinearnup

My interview will air on September 18th. Register now so you can see all the details.

It’s About How You LIVE! FREE Telesummit for medical professionals, caregivers and anyone interested in learning more about advance care planning, serious illness, hospice care and grief. Do not miss this free opportunity to learn from the best of the best! Register Here!
https://www.itsabouthowyoulive.com/katherinearnup

I hope you will join me on September 18th! And check out the other experts while you’re there! All the interviews will be archived, so you can listen to them at any time.

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Dr. Ira Byock is an American leader in hospice palliative care and a passionate advocate for end of life care. His first book, Dying Well, was released 20 years ago and it’s a remarkable book for its time and indeed for any time.

Earlier today, I listened to a discussion with Dr. Byock held in celebration of the book’s 20th anniversary. I wanted to share the link with readers of this blog – I think you’ll find  it as inspirational as I did.

https://iteleseminar.com/100035084?mc_cid=8f0593f849&mc_eid=[UNIQID

 

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http://www.npr.org/sections/health-shots/2017/08/11/542607941/nearly-1-in-5-hospice-patients-discharged-while-still-alive

When I first saw the headline for this NPR story, I thought it was a good news story! One in five patients being discharged from hospice! That’s amazing!

But when I dug into the article, I realized how wrong I was. You see, in the US, most hospice operate on a for-profit basis. They are looking for ways to improve the bottom line by moving out patients who might need costly medical procedures – re-admitting them after they’ve been treated. As well, there’s evidence to suggest that they may be over-admitting patients who might not be within 6 months of death, thereby insuring that they fill all their beds. This doesn’t sound like good news to me!

Hospices in the United States began much like those in Canada – through the pioneering efforts of people following the example of Dame Cicely Saunders, founder of St. Christopher’s Hospice in London.  Once Medicare began to pay for the “hospice benefit,” for-profit enterprises (including venture capitalists) began purchasing and establishing hospices. The result of this is described in the attached article.

We are not perfect here in Canada – hospices are not adequately funded by Medicare and millions of dollars must be raised by each not-for-profit hospice just to survive. Costs are kept down by the use of thousands upon thousands of volunteers – providing enormous savings in staff salaries and invaluable services of all kind. As many people have noted, volunteers are the heart and soul of hospice and the benefits we provide are immeasurable.

Volunteers are essential to American hospices as well, of course. In fact, to receive funding through the hospice benefit program, at least 5% of staffing costs must be provided by volunteers. That’s a huge incentive to organizations to attract and retain volunteers.

Not all hospices in the U.S. operate on a for-profit basis. And I’m sure that some of the for-profit hospices provide excellent, caring services for people at the end of their lives. Nonetheless, I’m glad that in Canada, so far, we’ve maintained the non-profit basis for hospice services established by the founders of the hospice palliative care movement.

 

 

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I have a very difficult time dealing with people who are exhibiting signs of serious confusion or dementia. Perhaps it’s because I’m what I often describe as “pathologically honest” –  the result, no doubt, of being a judge’s daughter.  So when someone asks me a question that seems to come from way out in left field, I have a hard time not responding with what I see as “the truth.” Whether or not that’s the right thing to do, however, remains an open question.

I’ll give you a couple of examples.

One of the first times I faced this challenge in hospice was with Margaret. She was a woman in her 80s with a large, loving family who surrounded her with music and laughter, grandchildren and treats. One morning, when I approached her bed to ask if she wanted anything, she beckoned me closer.

“The air is changing. Can you feel it?” she whispered.

I was at a loss as to how to respond. I certainly couldn’t perceive any change in the air.

“No, I can’t,” I began.

“Well, you should be able to. It’s going to be in the Toronto Star.”

Before I could ask her precisely what the air felt like, she began talking about a complex machine she’d been asked to work on. She described gears and levers and a fantastical operating system that she seemed to understand perfectly.

“That’s amazing!” I said, in all honesty.

A few minutes later, I found myself chatting with her adult children who were relaxing in the hospice sun room. I mentioned Margaret’s comments to me and they smiled knowingly.

“Yes,” her son said. “It’s hard to know what to make of it.”

“Some people might say it’s the result of the medications she’s on. Or a lack of oxygen in blood stream. But somehow it doesn’t feel like that to me. Any way, I’m not about to ‘correct’ her,” I said.

“Neither are we,” a daughter chimed in. “And you know what? The workings of that machine she’s talking about are far too detailed to be the result of confusion. Mom never had any interest whatsoever in anything mechanical, and now she’s talking about complex mechanisms she has no business understanding.”

We settled on it being part of the mystery and left it at that.

All these years later, I can still see Margaret, sitting up straight in her bed, pointing towards the gardens and the river beyond.

****

On the weekend before she died, my sister Carol had a clarity and drive we had not seen in months. That’s part of why I was so taken aback when she seemed so disoriented when I arrived at her house on Monday.

“What are you doing here?” she asked.

“Umm, I’m here to visit you,” I said, more than a bit unnerved.

“Katherine’s come to spend time with you,” her caregiver B. offered. “Just like she always does.”

The sound of my name seemed to jolt her back to the present. We chatted a bit about what I’d been doing and how she was feeling and things seemed back to normal.

Then, out of the blue, she asked if I still had her piano.

“Your piano?” I asked. “Of course I don’t have your piano. It’s right upstairs where it belongs.”

I’m sure she could tell by my expression that I was freaking out.

“Not that piano! My tape of the soundtrack from The Piano!”

“Yes, I still have it,” I said a little sheepishly. “Do you need it back?”

She shook her head, laughing. She always loved to tease me!

It would be the last time. The next day, we were faced with a medical crisis. And by Friday morning, she was dead.

****

I could provide many more examples of hospice patients who have exhibited everything from mild confusion to profound dementia. Some will ask the same question  over and over again, trying to make sense of their surroundings. “How did I get here?” “Why am I here?” “Where’s my husband?”

There is no simple answer to those questions, and I’m no longer sure that pathological honesty works in all circumstances. What use is it to tell someone who suffers from profound dementia that they are in a hospice, or that they are dying, or that their husband has preceded them in death? The greater likelihood is that they will repeat their question every five minutes, regardless of whether we provide an answer.

So what are we to do? I come back to the place where I always try to begin. Be with them. Simply be with the person as they are, with their confusion, with their suffering, with their sadness. It is by no means easy. But I believe it is a way to honour their humanity, in all its complexity and mystery.

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Dr. Peskin’s first article on the face of dying. I know that when my sister was dying, I felt reassured when I learned what dying might look like and I could better understand the meaning of what I was witnessing. In my hospice experience, most people fall into a deep sleep and die peacefully. Here Dr. Peskin discusses some of the symptoms patients might exhibit.

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A beautiful article on the face of dying – by a physician.  I’ll post her earlier article too.

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