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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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In the past few weeks, I have sat with a number of patients as they were dying. As a hospice volunteer, one of my most important roles is to be with people nearing the end of their lives to ensure that no one dies alone. The experience is humbling, deeply moving, and a poignant reminder of the circle of life. Each time I watch someone take their last breath, I am struck by the mystery of life and death – breath and finally no breath. Ever again.

I don’t know who I would be today if I had not cared for my sister when she was dying. If I had not sat with her as she took her last breath, I doubt I would now have the wisdom and equanimity to sit with dying people today. If I had not cared for my sister, I might still be pretending that I could somehow avoid dying – both myself and the people I love. I might still be racing from meeting to meeting, barely stopping to notice what was happening right in front of me. I might still be steering a wide berth around people who had lost someone close to them, lest I somehow “catch” death myself.

These days, I spend time following the debates in the House of Commons on what is now termed Medical Aid in Dying. Whatever happens in the Senate in the coming days, Bill C-14 will soon be the law of the land. People will be able to request and receive medical aid in dying.

Yet, the fact is that people have been receiving medical aid in dying for centuries. Medications have helped to ease pain and suffering and to reduce the symptoms that are part of the dying process. In that past few decades, hospice palliative care has made enormous strides in easing such suffering. New drugs and treatments, the practice of titrating the dosage so that the patient can live pain-free and alert for as long as possible – all of these methods are form of medical aid in dying. The presence of compassionate and caring staff and volunteers might be termed non-medical aid in dying. We accompany and help people in this final passage in life.

When I sit with a patient who is dying, when I see a family surrounding their beloved parent, I feel that I am part of the mystery and the miracle of life. Like the births I have witnessed and experienced, these deaths too are an integral part of life.

I hope that, whatever form the final legislation takes, we do not lose sight of these fundamental truths.

 

 

 

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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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Yesterday, I spent the better part of the day at the Aberdeen Pavilion, a beautifully restored heritage building that has housed military troops, the cattle show, the original Ottawa Senators, and many other groups – mercifully not all at the same time. Yesterday, it was home to the Ottawa branch of CARP (Canadian Association of Retired Persons)’s Savvy Senior Fair – an event that included speeches by Mary Cook (a favourite Ottawa author and story-teller) and Margaret Trudeau, the Prime Minister’s Mom, as well as dozens of services, businesses, and vendors hoping to attract the attention of the more than 800 attendees.

In among all those people, I set up my table, complete with display board, post cards, business cards, copies of my book, and a bowl full of dark chocolate squares (my version of swag). Those of you who know me will know I am an off-the-chart introvert – this event was definitely out of my comfort zone by a huge margin. But as I rapidly approach my 66th birthday, I accepted the challenge when the organizer asked me to join in.

As the savvy seniors began to drift into the chilly hall, I stood by my table, prepared for the onslaught. And sure enough, many people reached into the bowl for a chocolate, before heading down for the free mini-magnifier, samples of granola, and tea. I knew I had to ratchet up my game if I hoped to sell any books.  Post-cards at the ready, I began approaching anyone brave enough to stop and read the words on my poster.

“What exactly are you offering here?” several people asked.

“I’m selling this book,” I said as I indicated the as-yet-untouched pile. “I wrote it,” I added, smiling a little shyly.

The responses I received surprised and sometimes disturbed me – and that’s the reason I decided to write this blog post today.

“I don’t have parents anymore,” many people told me. “They’re long gone,” some added.

“I just mow the grass now,” one rather odd man said. It took me a minute to realize he meant the area around their grave.

“Do you have kids of your own?” I began to ask those who stopped to talk. “I figure it’s the book we need to give to our adult children so they’ll learn how to be with us.”

Here’s where the responses got really interesting.

“That’s not going to happen,” one man said. “We’re just going to get out of the way.”

I wondered how he planning to “get out of the way” – not something I wanted to think too much about.

“I don’t want my kids to take care of me,” several people said. “My wife and I looked after our parents for years, and it’s the last thing I want to stick my kids with.”

There was seldom a chance for an in-depth conversation, and I was left with many unanswered questions.

I wanted to say, “I’m not talking about changing your diapers or giving you a bath! I’m talking about how they will BE with you when you’re older.”

I wanted to say, “My book is called A Compassionate Guide to Caring for Your Parents and Yourself.”

I wondered what they thought “caring” meant. I wondered why they were so appalled at the idea that their children might care for them.

What if caring means visiting, talking, watching a movie together? What if it means going to the doctor together? Or going out to a restaurant?

What if caring is about a way of “being,” rather than doing? Would that be just as distasteful to the seniors passing by my table?

This morning, in the quiet of my study, I’m wondering if I was trying to appeal to the “wrong demographic.” I’ve always said it’s the adult children of aging parents I’m really writing for. Yet I wonder what their response would have been yesterday.

They are the ones who say “I don’t have time for this!” – the ones juggling children and jobs and aging parents. They’re also the ones saying “Can’t I hire someone to do this?” (Hence all the businesses offering services at the fair!)

As always, I have much more to say on this topic – but I’ve already found my way into the stash of leftover dark chocolate squares so I better quit before I over-indulge. I’d love to hear what others think about the meaning of caring.

 

 

 

 

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A piece I wrote about my sister Carol was excerpted in The Caregiver’s Voice today.
Here’s the link:
http://thecaregiversvoice.com/avadian-musings/we-will-remember-you/

I’ve written lots of blog posts in the past few days – alas, all in my head, as I’ve been caring for my sweet little grandson who is under the weather (with a fever! in this heat!)

More to come soon….
Katherine

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