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Posts Tagged ‘hospice’

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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Last weekend I had the privilege of accompanying my aunt on the final days of her life. Long burdened with Alzheimer’s disease,  Aunt Ruth turned 94 on Friday, accompanied by a staff member who had stayed late Thursday night so she could be the first to wish her a happy birthday. On Saturday night at 11 p.m. she took her last breath, with another staff member by her side.

One of the longest residents of Fenelon Court, the long term care residence where she spent the final years of her life, Ruth was loved by the staff, who called her Ruthie, her childhood name I had only heard in family stories. She was the youngest of my father’s five siblings and the last to leave. She was spunky, spirited, outspoken, generous, and loving.

When we arrived from Ottawa on Friday, she was somnolent, no longer responding to visitors or staff. I had brought my ukulele with me on the trip, and knowing that hearing is the last sense to leave, I set myself up by her bedside and began to play. Whether she could hear me I’ll never know, but I like to think that the music of Leonard Cohen (Hallelujah) and the gentle words of The Water is Wide provided her with comfort on her journey.

As I played, staff came in and out of the room to check on Ruth, and to offer drinks or food to me. Each time they entered, I was struck by their gentle caring and familiarity with “Ruthie.”

“She’ll do it in her own time,” one nurse commented. “You always have, haven’t you Ruthie.”

On Saturday we spent much of the day with Ruth, giving my eldest sister a much-needed respite from the long days she had been spending by her side. Once again, I sang, shared birthday cards and stories with Ruth, reminders of the love that surrounded her. When we finally went back to our hotel at 9, one of the nurses reassured us that she would sit with Ruth. She remained at her side until she died.

The next morning we returned with my sister Judy to begin cleaning our Ruth’s room. Ruth’s body was still there, and I was glad for my years of hospice volunteering that helped it seemed perfectly natural. As I remarked on the volume of clothes in her closet, I couldn’t help but notice their beautiful condition – another tribute to the careful attention of the staff.

As we prepared to walk out with the people from the funeral home, a staff member lay a quilt over her body, and as we walked slowly to the front door, staff members throughout the building lined the halls, a gesture of respect I recognized from my own hospice.

Though I am writing this post to honour Aunt Ruth, I am also honouring the amazing staff at Fenelon Court. When I knew she was in a long term care facility, I had an image of hallways filled with patients sleeping slumped over in wheelchairs, a certain smell permeating the building. I had witnessed these scenes in other long term care facilities, and I was dreading seeing my aunt in such a place.

Fenelon Court could not have been farther from those expectations! The building is bright and clean, the patients engaged in activities where possible, and attended to with care in every encounter I witness. “We are their family,” one nurse told me. “Often they have a son or daughter who rarely visits. We are here every day and we love them. They’re our family too.”

Perhaps it’s because the facility has only 67 residents – and it is designed in pods so each area is relatively small and contained. Perhaps it’s because it is located opposite an elementary school and children often visit the centre, sharing drawings, Easter activities, and joy with the residents. Perhaps it’s because it’s located in a small town, a place where community really matters. But I think there’s something more – something I can’t quite put into words – beyond respect, dignity, caring, and love. That’s what I experienced with my aunt last weekend. And for that I am enormously grateful.

Fenelon Court

fenelon_overview

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Today is March 8th, International Women’s Day. So it seems appropriate to share this article about Dame Cicely Saunders, the founder of St. Christopher’s House in London and a pioneer in the modern hospice movement. Many people involved in hospice palliative care work in Canada and elsewhere were inspired by her work and her life. Dr. Balfour Mount (the Montreal physician who established the first palliative care unit and coined the term palliative care) and Dr. John Seely (a champion of palliative care in Ottawa and friend and colleague of Dr. Mount) both visited Cicely Saunders in London and saw first hand the importance of her work.

So today, I am grateful for Dame Cicely Saunders and the many many women who came before us, who paged the way for our work today, and shone a light on the possibilities of the future.

http://endoflifestudies.academicblogs.co.uk/celebrating-the-life-of-cicely-saunders-on-international-womens-day-by-david-clark/

 

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This letter, by writer Peter DeMarco, to the people who cared for his wife in her final days, reminds me of the quality of care we provide for dying people and their families in hospice.

http://www.nytimes.com/2016/10/06/well/live/a-letter-to-the-doctors-and-nurses-who-cared-for-my-wife.html?_r=0

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An article I wrote was just published on a wonderful site called KevinMD. Here’s the link:

http://www.kevinmd.com/blog/2016/09/helping-hospice-present-much-important-busy.html

As always, I’d love to hear your thoughts.

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https://www.thestar.com/opinion/commentary/2016/08/30/first-step-to-improving-palliative-care-change-its-name.html

A recent article in the Toronto Star suggests that we should change the name of palliative care – perhaps to supportive care – in order to encourage people to seek out care early on in their illness. I’ve seen similar articles in the US as well, arguing that palliative care and hospice care scare people off – presumably because of their association with death.

As an historian and long-time hospice volunteer, I think we should celebrate the contribution that Canadians have made to end of life care. That includes celebrating Dr. Balfour Mount, the pioneering Montreal physician who coined the term palliative care back in the 1975. I’m proud of what we’ve accomplished in Canada and I’m happy to tell people about it.

What do you think?

 

 

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