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Posts Tagged ‘end of life care’

Yesterday, I had the opportunity to be part of the first annual Provincetown Book Festival. There were wonderful readings by poets, novelists, memoirists, and others, great discussions, and a book fair, where authors displayed and sold their books. Along with 14 other authors, I spent the beautiful sunny day sharing my work and selling and signing my book.

I was a little concerned that people in a vacation spot like Provincetown might not be interested in buying a book about caregiving, death and dying. What surprised me was how many people shared their own stories with me – deeply personal intimate stories of illness, caring for parents, and coming to terms with death.

Many of the people who approached my table shook their heads when I told them what the book was about – not because they weren’t interested, but because their parents were dead. “I cared for my parents into their nineties,” one woman said. “And we cared for my partner’s parents too. It was a long stretch.”

Not surprisingly, given the fact that daughters by far and away do the work of caregiving in comparison to sons, most of the people who stayed to talk with me were women. Now in their 60s, they were beginning to think about their own aging process, and who might care for them. “I better give that book to my kids,” one woman laughed. “It’ll be their turn soon.”

For those women who don’t have offspring to whom they can turn, the options may be more limited. Nieces (and nephews) may be willing to take up the task of caring for their aging aunts (and uncles) – but it’s likely they’ll have their own parents to worry about already.

As Baby Boomers, many of us are fiercely independent, and dread the thought of becoming a burden on our children or family members. I urge readers of my book to begin talking about these issues now, before it’s too late, and we find ourselves in a state of emergency. What heartened me about yesterday was how many people were more than willing to have these discussions – with one another, with other people who approached my table (and my fellow writers, and with me.

A couple of women who came by the table said that the topic of my book was just too close to home. Two women had recently been diagnosed with cancer, and were undergoing treatment. A stark reminder of how present cancer and other illnesses are in all our lives.

This willingness to talk openly about life and death is one of the reasons why I love being in Provincetown. Yes, lots of people are here to spend their days at the beach, before relaxing at the tea dances, restaurants, and bars, but many others still carry the memories and images of how AIDS devastated this town in the 80s and 90s. Provincetown has a higher proportion of people with HIV/AIDS than the rest of the country, and year round Provincetown residents work with and support the services that sustain people with HIV/AIDS. They are more than willing to share their stories with me over a glass of wine at the bar where I love to write.

Sometimes I worry that too many people have their heads buried in the sand when it comes to illness, death and dying (as in, if I don’t talk about it, it won’t get me!) Being able to have talks such as the ones I’ve had here in Provincetown give me hope that some people are embracing the opportunities to talk.

PS: The book fair got terrific coverage in the Cape Cod Sunday Times!

Here’s the link to the story:

http://www.capecodtimes.com/news/20160918/authors-drawn-to-provincetown-book-festival#ReaderReaction

 

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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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When I was first training to be a hospice volunteer (in 2001), one of the most important lessons the leaders drummed into us was the centrality of boundaries. We were reminded repeatedly that we were not a family member, a close friend, or even a not-so-close friend of the residents. In short, we were not in the “inner circle.” That space was reserved for those who were closest to the person who was dying, be they family of origin, by marriage, or by choice. As death grew nearer, we were to maintain a distance, making room for those in the inner circle to spend time with the resident before they died.

I had no problem with this lesson, since I had struggled with boundary issues when my sister was dying and a woman we had hired to assist with her care started to feel that she was as close to Carol (or perhaps even closer!) than we were.

We were also repeatedly instructed about confidentiality and never speaking about what happens in hospice with other people. What wee weren’t really prepared for is how to be when we know one of the people who is admitted to the residence.

As someone who lives in the same neighbourhood as the hospice where I volunteer, it’s perhaps inevitable that people will be admitted with whom I am familiar, whether as neighbours, colleagues, or local activists. When that has happened, I’ve made a mental note in my mind, mostly by way of acknowledging the sorrow and loss they must be facing. I make a point of not indicating I’m familiar with them, out of respect for their privacy and the tremendously challenging circumstances they are facing. I hold them in my heart, and continue with my work both inside and outside of hospice.

A while ago, a woman was admitted with whom I had more than a passing acquaintance. We had been colleagues once upon a time, members of the same neighbourhood, and friends of friends. I was saddened to see that she had been admitted and wondered how I should be. Should I avoid her room as much as possible out of respect to her privacy? Or should I go and greet her and help make her feel welcome?

I chose the latter option, as I knew in my heart it was the right one. I knocked on her door, came to the side of her bed, and said something like, “I’m sorry to see you here – though I’m glad you can be here.” She asked how long I had been volunteering and I told her. And she told me what a wonderful place it was. We spoke for perhaps five minutes, then I left her to rest while her family went to lunch.

For the rest of my shift, family and friends visited her, and I steered clear except to respond to the call bell.

The following week, as so often happens when someone decides to come to hospice, she was much weaker, and a note in the book indicated that only wanted to see her family. Despite my desire to go in and say hello, to offer my “expertise” or “wisdom,” I knew that was much more for my own needs than hers and I resisted.

This is often the litmus test for me when I am facing such a decision at hospice. I ask myself this question: “Are you going to see the resident (or say this brilliant thing) because it will support or help them? Or are you doing it because of a need of your own? To feel helpful and needed. To be validated in some way. To feel connected.”

I really do ponder those questions before going to a room or saying or doing something, especially as a patient nears death. Most of the time, the answer is that I can be of service to the patient, whether by sitting at the bedside when they are alone or singing songs or reading the Bible (or poems or any book that’s evident in their room). And I can feel certain that I am not breaching any boundaries and getting myself “in trouble.”

It’s inevitable that we will meet people we know in the hospice work that we do. Indeed, in rural hospices and small communities, it is unavoidable. The important thing is not that we avoid people we know or pretend we don’t know them. Rather it is respecting the honour and privilege we have been given in being able to accompany people when they are dying. Sometimes that means doing the dishes or making up beds or getting more ice to make ice chips. And sometimes it means making space for family members (supporting them if we can) and respecting their time with the person they love.

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As the June 6th deadline for legislation on assisted dying rapidly approaches, the news is filled with stories pro and con on the best way to approach the issue of end of life care. Often missing from these debates is any real discussion about hospice palliative care – what it is (and what it is not!), what it offers to patients and families, and what end of life care might look like if palliative care were available to every Canadian.

The following article from the Toronto Star last week by a prominent palliative care physician does a great job at tackling these questions.

https://www.thestar.com/life/health_wellness/2016/05/09/palliative-care-is-not-about-dying-but-quality-of-living.html

 

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Somehow the month of April seems to be have raced by. For me, it was filled with speaking engagements (Colonel By Residence in Ottawa; Hot Talks on Health in Toronto) and planning for upcoming talks at the Good Companions Centre this week and in Lindsay and Fenelon Falls next week. It’s been exciting and energizing and a little exhausting (I am an introvert, after all!) and I’ve missing having the time and space to write and blog since my return from Virginia. I’ve made some great connections and met some amazing caregivers and volunteers and heard about the wonderful work being done by Carers UK. And now, here it is, May 2nd, and the start of Hospice Palliative Care week.

Yesterday was the Annual Hike for Hospice – I’ve attended all but one since I started volunteering at hospice in 2001. It’s always a great time to meet fellow volunteers, family members we’ve helped at hospice, and supporters of hospice palliative care. Hopefully – despite the dark skies and rain – we were able to raise much needed funds to continue our work at Hospice Care Ottawa.

I love talking about the work we do at the hospice (can you tell?) and I seem to find a way to insert hospice care into every talk I give, even if it’s not explicitly about hospice care! In these days when so much media attention is focused on physician assisted dying, I feel it’s vitally important to dispel some of the myths about palliative care and to tell people what hospice palliative care is all about.

Most people have never stepped inside a hospice. No doubt they have many fears and misconceptions about hospice care.

Some people think that hospice care hastens death.In fact, hospice care enables people to live their final days or weeks without pain (in most cases) and with dignity. Research suggests that hospice care can enable people to live longer once their pain and symptoms are successfully managed.

Many imagine that a hospice is a dreary place devoid of laughter or celebration. I can’t tell you how many times people have asked the question: “Don’t you find it depressing volunteering in hospice?” I tell them that yes, there is sadness at the end of life, but there is also joy and celebration. I have seen high school graduations, wedding and birthday and anniversary celebrations – even a visit from a brand new great grandchild – in my years at hospice.

Hospice palliative care enables people to live fully until the end of their lives. For those of us who are privileged to work in hospice care, we find inspiration and meaning and a reminder of the things that really matter in life – human connection, love, caring, dignity.

I am honoured to be a hospice volunteer. I know that many readers of this blog share that honour with me. Let’s take this week to tell others about the gifts of hospice care. Share this blog with them. Share your story with them. Encourage them to get involved, whether it’s helping to raise money, or volunteering as a driver for day hospice, or telling their elected officials of the need to provide sustainable funding for end of live care.

Let’s spread the word about hospice palliative care – this week – and throughout the year!

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Last week the government of Ontario announced that it would be investing $75 million in end of life care over the next three years. In case you missed the story, here’s a link to the press release:

https://news.ontario.ca/mohltc/en/2016/03/province-strengthens-end-of-life-care-with-75-million-investment.html

The money represents a significant step in strengthening existing services and facilities and in creating new hospices across Ontario. While I might quibble with certain aspects of the plan, I am excited to see the government’s commitment to community-based hospice and palliative care services.

As readers of this blog are well aware, home- and community- based services cost money. But they are far less expensive, more effective, and (often) more humane than hospital-based care. One recent estimate suggested that end of life care in an acute care hospital costs $1250 to $1400 per day, whereas care in a hospice facility costs $450 a day, and care at home, even less.

I believe it is more important than ever that those of us who are involved in end of life care commit ourselves to talking about the kind of care we want and need in our communities. Talk to your friends and family members about the work that you do. Ask them what they hope for at the end of their lives. Get involved in community initiatives, whether it’s the annual Hike for Hospice (which will take place on May 1st in Ontario this year) or attending a forum or discussion group about home care and support services. Find out what’s happening in your community and see how you can get involved.

Many of us in Canada are feeling hopeful – not just that the snow will someday melt, but that we have government leaders (at last!) who are looking to strengthen and grow our social safety net. After a decade of cuts by stealth and by design, we have an opportunity to built a caring society. Let’s commit to making our voices heard in the days and weeks and months ahead.

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Sharon
On Monday morning I walked into Room 4 to meet our newest resident. Unlike most patients, Sharon had been admitted on a temporary basis to stabilize her medications and give her husband a break from the daily care-giving he had been doing for eight months.

“How are you doing?” I asked when I reached the side of her bed. “I hear you’re going home tomorrow.”
“Yes, I’m really excited about it. But I have to have a bowel movement first. I haven’t had a bowel movement in four days, so they’re going to give me a suppository. I really hate this.”
“I bet you do,” I said, remembering my sister’s struggles with constipation. “They feel really horrible, don’t they?”
“Yes,” she said, adding quietly, “My husband thinks this is yucky.”
“This?” I asked, searching for her meaning. “You mean, ‘bowel movements’?”
“Yes. He hates them.”
“Lots of people do,” I said, remembering how uncomfortable I was with my mother after her aneurysm. “But the funny thing is, we all have bowel movements. It’s just that until we get sick or disabled, we do it in private. And for sure, we don’t talk about it.”
She looked at me with a blend of relief and disbelief. A stranger was standing at the side of her hospital bed, not a nurse or a doctor, just a volunteer, talking in a matter of fact manner about bowel movements.
“It’s crazy isn’t it,” I continued. “You have to take meds for the pain. The meds cause constipation. Constipation causes pain. Sometimes worse pain. You have to take something for the constipation. Which in turn causes more pain.”
I reviewed the alternatives in my mind: laxatives (milk of magnesia, exlax), stool softeners (colace, laculose), suppositories, fleet enemas, fecal extraction. A continuum of intervention. Whatever the method, eventually there is relief. But first there are more decisions to be made. Location. Method. Washroom unassisted. Washroom with walker. Washroom with assistance. Commode at the bedside. Two-person assist to the commode. Bed pan. Catheter. Diaper. So much of life at the end is focussed on bowl movements.
When I told the nurse that Sharon felt like she had to go to the bathroom, she said: “She has a diaper. Just tell her to go. She doesn’t have to worry.”
“It’s funny,” I mused.”Our mothers spend years toilet training us, instilling in us a horror of accidents, and now we tell our patients, ‘you don’t have to worry. Just go.’ It goes against everything we’ve been taught.”
“In some ways, it must be a relief,” she suggested. “You know, to just let it go.”
“I don’t think so,” I said, knowing it would be no relief for me to have my private bodily functions made public – the smell, the mess, the anticipated disgust of others.
When I teach a unit on death to my first year class, my students are horrified at the loss of dignity. Tubes. Bedpans. Diapers. “If I get like that, just kill me,” one of them says, and they all nod in agreement, laughing nervously. I tell them, “there is dignity even in the midst of death. We create the dignity. We carve it out in the face of profound indignity.” They stare at me in disbelief.
Sharon and I were both mothers. We had changed thousands of diapers, rarely feeling disgust. For us, these were acts of love. Small acts of love and necessity.
“One of the things you find when you’re caring for someone who is dying,” I said, “is that you can do things you never thought were possible.”
“How do you mean?”
“I never would have thought I could have cleaned up my sister’s vomit day after day. But I learned to do it. I got to the point where I didn’t even mind.”
“I don’t think my husband will ever get to that point,” she said.
“Maybe he won’t,” I admitted. “But maybe you can get someone to help you at home.”
“He doesn’t want any help,” she told me. “He wants to do it all himself.”
The nurse arrived with a suppository. “That’s something I never learned to do,” I confessed. “I was always afraid to push it too far, so it kept popping out.”
Sharon laughed at my admission of incompetence. “So I leave it to the professionals,” I joked with the nurse. “We all have our skill sets, and suppositories don’t appear to be in mine.”
“You never know,” the nurse encouraged.
“I’m pretty sure on this one. It doesn’t worry me too much. I have lots of other skills.”
Like standing at a bedside, talking matter-of-factly as the suppository begins its work.
After a few minutes, Sharon told me she was ready.
“You have to wait a little longer. I know it hurts,” I said.
I remembered my sister begging me to let her get up on the commode. “I have to go NOW.”
“Wait a little longer,” I would tell her. “Just a little longer.”
“I can’t,” she would scream at me. “You don’t have any idea how horrible this feels. I can’t wait any longer.”
“Just a little longer,” I urged Sharon. “I’ll talk to you while you wait. It’ll make the time go by.”
And so we talked about her family, two boys and a girl, smiling in the 12 by 16 framed photograph on the dresser. Sharon had long blonde hair in those days, a salon cut, a beautiful smile. Before chemo. Before radiation. Before she came to the hospice.
“It hurts,” she said finally, returning to the reason I was standing here.
“Just a little longer,” I urged. “It’s only been twenty minutes. Let’s try for half an hour. It’ll be more effective that way.” “Let’s.” I caught myself. As if I had a suppository stuck up my rectum too.
“I can’t wait,” she said. “It hurts SO much.”
“Think of it as labour,” I said. “Remember when you got to that point where you absolutely had to push or you were sure you’d explode? And the doctor told you that you couldn’t push yet?” She smiled.
“Think of it as transition,” I continued. “And you have to wait before you push. Just breathe into it.” I breathed slowly. “Remember how to do your breathing? I bet you took childbirth classes, didn’t you?” She nodded. “So did I. Fat lot of good it did me. I had 48 hours of labour followed by an emergency C section. But I did make it to transition. And pushing.”
My stories distracted her.
We talked a little longer. Then she said, “I can’t wait any more. Has it been half an hour?”
“Yup,” I said.“You can go ahead and push.”
“You can go take care of someone else for a bit,” she said, meaning, “I want to be alone.”
Every five minutes, I poked my head into her room. “You OK?”
“Yes, Katherine. I’m OK.”
“You finished? Do you need the nurse?”
“Yes,” she said finally. “I’m ready.”
And so together the nurse and I bathed Sharon. She was a heavy woman, bloated by cancer and the steroids she’d been taking to reduce the swelling from the brain tumour. We turned her gently onto her side.
“Roll over towards Katherine,” the nurse instructed. “And hold on tight.”

(Note: Names and other distinguishing details have been changed to anonymize the patient.)

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