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Posts Tagged ‘hospice volunteering’

Before I start this post, I want to share with you an amazing podcast from the BBC that I came across recently. Here’s the link:

We need to talk about death

You can listen to it on your computer, or download the podcast and keep up with all the episodes as they are posted. There are two at the moment and they are truly wonderful. The instigator and narrator is a wonderful British woman in her 80s. She’s gathered a small panel of “experts” – people who have thought a great deal about death during their lives. The first episode talks about the importance of facing our fears of death and dying. The second focusses on pain. I wish I could sit down with all of you and listen to it together – and then talk about our own thoughts, feelings, and reactions. We seem to have so few places to talk about such things.

If you’re a regular reader of this blog, you’ve probably noticed that I haven’t posted in nearly two months. I could tell you that I’ve been busy, that life’s gotten in the way, that I’ve been working hard on other things, and, while all that would be true, it’s not the real reason I’ve been silent.

The real reason is because I’ve been struggling to find the meaning in the work I am doing as a hospice volunteer. It’s not that I’ve lost the calling. That’s something I’ve felt since I first walked into the hospice where I still volunteer. It’s something I’ve known since my sister told me “You’re going to be an expert at this by the time you’re done with me,” shortly before she died. While I certainly didn’t want to learn how to be with dying from my sister, she was, as always, an excellent teacher.

I feel honoured to be able to help dying people and their families. I treasure the conversations we have had over the past 15 years – and I hold deep within my heart the memory of the people with whom I’ve sat as they took their last breath.

But increasingly – slowly over time and, of late, more frequently – I’ve found myself confronted with more and more rules and restrictions, tasks and prohibitions. Seldom do I seem to have the time to sit with someone who is dying. Or to retreat to the sun room to have a chat with a family member who is having a hard time. Instead, I’m in the kitchen, loading the dishwasher (or waiting for it to be finished!), rushing to answer the phone or fix someone’s lunch.

I have never minded the quotidian tasks that are part and parcel of volunteering – I’ve become quite the expert at making jello, grilled cheese sandwiches, scrambled eggs (though not poached, after all these years). Those things have been part and parcel of the services we do. My struggle has been that we are faced with an increasing number of rules about how things must be done and what we must do to the point where I wonder if “being with dying” is actually part of our “job.”

Perhaps you’ll think I’m complaining – or being unrealistic about the degree to which organizations must change when they advance from their “pioneering phase.” But when I listen to people talk as they do on the BBC program mentioned above, I am reminded once again of the reason why I became a hospice volunteer – and I mourn what seems lost in the process of  growing, consolidating, and institutionalizing.

From my casual conversations during shift changes and with friends, I know I’m not alone in these feelings. I wonder if any of you readers out there might feel the same.

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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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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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I first wrote this post at the Virginia Center for the Creative Arts. It’s a year later now, and I am back in Virginia, writing about caregiving, end of life issues, and – yes – dignity.

Much has changed in the past year. We elected a new government – one that is committed to working with the provinces, to reforming health care, to providing more palliative care and support for caregivers in the home.

At the provincial level (I live in Ontario), we’ve seen a commitment to build up to 20 new residential hospices, to provide additional funds for existing hospices, and to increase support for caregivers. These are important initiatives and I look forward to seeing them implemented.

At the same time, however, there has been very little discussion about what hospice palliative care is – what it looks like, what it means for families and for patients who are reaching the end of their lives. There has been little discussion about what we want and need at the end of our own lives.

I hope that readers of this blog will take up the call to talk with your friends and family, your neighbours and workmates, about the kind of care we need and deserve. I hope you will talk about dignity and what it means to provide loving, respectful, dignified care for the people you love. These issues go to the very heart of what it means to be human. Please join me in this vital conversation.

Hospice Volunteering

I’ve been thinking (and writing) a lot about dignity in the past couple of weeks – what it means and how the notion of dignity has been largely appropriated by the “right to die” movement. Organizations with names like “Dying with Dignity” and “Compassion and Choices” seem to suggest that the only dignified way to die is with the assistance of a physician (whether through lethal injection or the provision of a lethal dose of medication).

Yet, dignity and compassion have been core values of the hospice movement since Cicely Saunders opened the first modern hospice in 1967 and remain central to our work in hospice palliative care today. Compassion lies at the heart of how we deal with patients and their families. And the preservation of a patient’s dignity, integrity, and respect are central to how we care for each person who enters the hospice program, whether in their…

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“What’s in a name? That which we call a rose by any other name would smell as sweet.”  (William Shakespeare)

“A rose is a rose is a rose is a rose.” (Gertrude Stein)

I’ve spent the better part of the morning watching coverage of the Supreme Court of Canada hearing on the Federal Government’s application for a 6-month extension of the Court’s February 6th deadline (an extension to the Court’s one year exemption on its decision in Carter v Attorney General of Canada, February 6, 2015). Should the Court decide not to grant the extension, the provisions of the Criminal Code that criminalize assisted suicide will be struck down in less than four weeks from today.

I have written about this issue on a number of occasions on this blog. (If you wish to read those articles, type the words “assisted suicide” in the search box at the top of this post.) Sitting at my desk watching the coverage today, as I did on October 15, 2014 during the original hearing, I was struck once again by the power of language – the use of words to support or undermine a particular argument. (I was struck by this last week, as well, when I attended the “consultation” by the Ontario Government’s committee on assisted dying, as opponents chose to use the word killing while advocates spoke of the unremitting, unrelenting and horrific suffering that failure to provide physician-assisted dying would inevitably cause.

As readers of this blog will know, I find the debate on this issue deeply troubling. As a passionate advocate of hospice palliative care, I am deeply concerned that such care (and pain and symptom management) is available to only 35% of Canadians (a generous estimate at best). I have also witnessed unremitting suffering as my sister died from cancer that had spread to her bones and throughout her body before her death at the age of 51.

I won’t even begin to suggest what I think the Supreme Court of Canada should do in this case. What I will say is that watching Joseph Arvay (the brilliant lawyer who has represented the BC Civil Liberties Association (in support of physician assisted dying) makes me wince as I listen to his claims that people currently suffering from ALS, MS, and other debilitating diseases will be condemned to suffer in agony should the extension be granted. So too do attempts to underplay the monumental (in my view) sea change that a policy of physician assisted dying represents.

What can I do in the face of this “war of words”? How should I respond as we face the inevitability of the decriminalization of assisted dying, whether in 6 months or four weeks (or right now, inside of the province of Quebec). As someone who was raised by a brilliant lawyer, jurist, and lover of language, I will choose my words carefully. I will inform myself on the issues as best I can (and for a former academic, that is a very time consuming job!) I will bring compassion to everyone who is affected by and speaks out about the issue. And I will continue to write, speak, and advocate for universal access to high quality affordable hospice palliative care for all Canadians from sea to sea to sea. And I will continue to serve the patients and families I meet each and every week at the residential hospice where I volunteer.

 

canada-supreme-court

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Earlier this week, at a volunteer meeting, a new volunteer confessed that she was finding it very difficult to deal with the unhappiness of one of the residents. She wanted to be able to do something to help her, and she found herself thinking about her frequently, even in the night. She feared that she must be doing something wrong, or, worse, still, she might not be cut out for hospice volunteering.

Several people offered insights into her situation, reminding her of the importance of simply being with the resident, and leaving the problem-solving to others. As well, they reminded her that some problems – be they medical, familial, or institutional – have no solution and we – and the residents – must learn to live with the situation as best we all can. [Note: I’m being unusually vague today, because I don’t want to breach patient confidentiality in any way.]

After the meeting, I spoke with the volunteer. I assured her that what she was feeling was perfectly normal and understandable – and not an indication that she wasn’t cut out for hospice volunteering.

“In my first couple of years here,” I told her, “I often found myself thinking about the patients. Sometimes I would even take an extra shift on the weekend, so I could see them again.”

She nodded, relief visible on her face.

“It’s perfectly natural that we feel this way,” I said. “After all, we are all human beings – and we have very big hearts. That’s why we are here.” Instinctively, I touched my  hand to my heart.

“But if we are going to last at this work, we have to find ways not to let it consume us. Somehow we have to feel their suffering, acknowledge it, and be with them through it. It’s not that I’ve become hard-hearted. I think I’ve learned a little about how to live with my limitations.”

“What if I can’t?” she asked.

“I’m sure you can,” I said. “In time, it will get easier. And you’ll be better able to see that there are many other people here to be with the patients and to help them with their challenges. For a while, I’m afraid I thought I was the only one who could help them! But I’ve gotten over that!”

We hugged and she thanked me for my word.

I knew that the challenge of being big-hearted wasn’t over for her – any more than it’s really over for me. We feel things deeply. It’s part of what makes us such great hospice volunteers (and friends and mothers and grandmothers and …). And we need to remember to bring compassion to ourselves so we can continue to witness and be present with the suffering of others.

More to come on this in future posts.

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