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Archive for the ‘Hospice’ Category

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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Preface: I just reread my last post, written nearly a month ago. I love the optimism in the conclusion, my happiness at being home amidst all my fixed points. Alas, within a few days I had somehow suffered an injury that left me with a pulled piriformis muscle and a resulting pinching of my sciatic nerve. (I know, this is too much information for most of you!) The result has been intense pain such that I have rarely experienced (48 hours of labour outdoes it but that was long ago, and with an excellent result!) It’s given me a new perspective on pain, on how exhausting and debilitating it is – and yet how largely invisible pain is, and thus people can assume (wrongly!) that it’s no big deal.

Many times over the past weeks, I’ve thought about how people reacted to my sister’s pain – suggesting she might be exaggerating or even making it up. I remember the orderlies who demanded that she “scoot over” onto their gurney from her hospital bed. Riddled with tumours up and down her spine, she could barely move, let alone “scoot over” upon command.

My sciatic pain was nothing compared to hers, which is why I hesitated to write about it. But as a nurse I worked with yesterday at hospice said, “it’s certainly not a lot of fun.”

All that to say, I haven’t been sitting at my desk for a long time – hence my silence here.

As readers may remember, yesterday was the 20th anniversary of my sister Carol’s death. As the date approached, I’ve thought a lot about the impact of her death on my life, and about what it means to lose a sibling. So I will share some of those thoughts here.

I fully recognize that not all siblings are close, often separated as they are by geography, age and even generation, by life choices, and historic grievances tracing back to childhood. Though my sister and I had had a few low points in her relationship (especially when I became a hippie and frequently criticized her for taking a “straight job.” I was insufferable!) But once I came to my senses and returned to university to become a teacher myself, our bond grew closer and closer.

When our mother suffered a massive brain aneurysm, Carol and I promised we would care for one another when we were sick or in need of help. And I was able to fulfill my half of that bargain when her cancer (originally diagnosed in 1978) returned with an unstoppable force in January 1997.

As often happens when someone is seriously ill, we became closer than we had ever been. Spending hours together, watching videos and bad daytime TV, remembering our childhood antics, talking about hopes and dreams (and fears).

When she died on July 4, 1997, I was devastated. Even though we all knew the end was coming, we had focussed on the immediate – tests, blood transfusions, medications – anything to make her more comfortable. My days were taken up with helping her, organizing her care, and commuting back and forth between Toronto, where she lived, and Ottawa where my immediate family resided. And then, suddenly, all that was gone. After months of thinking about what Carol needed, I had no idea how to carry on.

One of my strongest memories from that period was my desire for some sort of visible sign of my loss. A black arm band, a long black dress (as worn by widows in the Portuguese and Italian communities where I had lived for many years) – something to indicate that I was in mourning.

Though friends and colleagues sent cards and flowers immediately after Carol’s death, soon enough (far too soon for me) they began to carry on as if nothing had happened. Yes, I had a brand new job as the Director of Women’s Studies, and there were responsibilities I had to fulfill. But I still needed consoling.

What I found so difficult was the silence. Perhaps people didn’t know what to say.  Perhaps they found my bereaved state frightening. I had certainly been in their shoes before Carol died.  But now I experienced first hand the impact of avoidance and silence.

One factor, I think, was that most people my age had not yet experienced the loss of a close contemporary, be it a friend or relative. I was only 47 and Carol, just 51. While most of us experienced our grandparents’ deaths, and some of us, parents, siblings were part of the fabric of our lives, people who knew us from the very beginning (or soon thereafter), people with whom we could still consider ourselves young and more or less invincible.

At hospice, I see many people who are faced with the death of a sibling. I can still vividly recall the first person – her sister was a teacher, as Carol had been, her career and life now cut short by cancer’s horrible force. Her sister brought in baked goods almost every time she visited, and she would share the lemon bread, blueberry muffins, and other treats with the staff and volunteers. It was something concrete she could do, when there was nothing she could do to prevent her sister from dying.

Though we are not supposed to talk about our personal lives, I told this woman that my sister had died four years before. We didn’t discuss details, only that I, like her, had been her caregiver. She thanked me for telling her about my loss, and I could see her shoulders relax as she realized that she was not the only one.

Several years later, I bumped into her on the street.

“You know what I tell people?” she told me. “I tell them that when I met you, and I could see that you had lost your sister and you were still standing, and volunteering even, I knew I would survive the loss of my sister too.”

After Carol died, I searched for books that might help me deal with my loss and grief. While there were many books on parental and spousal loss, I found virtually nothing about losing a sibling. It’s one of the reasons I started writing about Carol around the time that I took the hospice training. Not only did I want to honour her with my words, but I wanted to let others know that I understand what it means to lose someone who has known (and put up with) you your entire life.

The death of a sibling can leave a deep and abiding void in one’s life. There will never be another Carol in my life. But I am grateful beyond words for what she taught me. And for the ways she has enabled me to help others through their loss and grief.

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My last post – a death in the family – has had an amazing ride over the past five days! After I posted it on Facebook, I tried to “boost” it to reach more people and for some bizarre reason, FB deemed it to be unsuitable, objectionable content – they refused the ad and removed the message from Facebook! Magically, it reappeared a day later (perhaps because I appealed, though I doubt it!) And since then, an amazing number of people have read the post about my aunt’s last days. I am enormously gratified by the response and so glad my story reached so many people. Thanks to all of you!

It’s been a busy week, because this is National Hospice Palliative Care week. I participated on a webinar for the Canadian Hospice Palliative Care Association on living well, right to the end. Here’s the link to the show (I’m the first speaker, right after the introduction). I hope you enjoy it!

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When I first started volunteering in a residential hospice 15 years ago, most people I encountered had never even heard of a hospice. When I told them it was a place that provided end of life care for dying patients and their families, they looked at me with a strange combination of horror and disbelief.

“You must be a saint!” people would say, stepping back slightly to avoid the glare from my halo. “I could NEVER do what you do,” they would add, though they actually had no idea what I did.

“Don’t you find it depressing?” was their closing question, perhaps their way of explaining why they could never take my place.

“Actually, it’s the most hopeful part of my week,” I would say, ready to offer an explanation to the questions that never came.

Fifteen years later, people are still a little surprised when I say I volunteer in a hospice. But instead of distancing themselves by putting me on a saintly pedestal, more often than not they ask me what exactly what a hospice volunteer does. They listen with interest as I describe a typical shift, which can involve everything from helping to give a bed bath to making poached eggs and toast, brewing pots of Tim Horton’s coffee, and listening to a grieving family member anticipating the loss of her sister.

Our work is both hands-on and open-hearted, I explain. I’m a short-order chief cook and bottle washer, a hand holder, and a singer of hymns. I’m a listener and a tour guide, a companion, and a witness. And I never know which among those roles I’ll play on any given day.

More often than not, people listen intently as I explain the nature of our work. While some still assure me that they could never do what I do, many say they might think of doing something like this, once they have the time.

I like to think that my being a hospice volunteer – and talking and writing about my work – is playing a small part in opening up discussions about death and dying in my community and beyond. Certainly I encounter more and more like-minded people on Facebook, at community gatherings, even at the movies. I believe that we are opening up essential conversations about how we want to live our lives and how we would like to approach our deaths.

As always, I’d love to hear what readers think about my writing here – I hope if you find it meaningful, you’ll share this blog with others, through your social media connections and elsewhere. I hope you’ll join me in these essential conversations about living and dying.

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