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Archive for the ‘death’ Category

I’m excited to see so many visitors to the hospice volunteering blog this week. I’m grateful to Hospice Care Ottawa for including the blog in their monthly newsletter for volunteers and staff. I hope that many readers will choose to follow the blog – that’s the easiest way to ensure that you keep receiving it on a regular basis. I don’t post a great deal – at most once a week, but often less, as life carries me away to other pursuits. There’s a button on the page that says “follow‘ – just click on that, give your email address, and you’ll get a message each time I post.

I have another reason to thank Hospice Care Ottawa – they graciously hosted the latest Death Cafe at the May Court Hospice on Monday. We had a great turnout – and from the buzz in the room I could tell that people were engaged in lively conversation. I know I had a great time with the three other people at my table!

I’ll keep you posted on other upcoming activities – here in Ottawa and elsewhere. In the meantime, feel free to share this blog, and to read the archived posts on this site. Thank  you!

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Hallowe’en is almost upon us and (coincidentally) Ottawa will be host to two death cafés!

The first one will take place at the May Court Hospice on Monday October 30. Registration is required so please contact: deathcafeottawa@gmail.com

See the death cafe website for more information.

https://www.facebook.com/deathcafeottawa/?rc=p

The second event will take place on Wednesday November 1st at the Art House Cafe:

COFFEE, CAKE AND MORTALITY
Death Café. A sequel.

Death Café? Ask the uninitiated what images those words evoke, and they’ll say morbid talk, the wringing of hands, and tears shed over coffee and cake. But they couldn’t be more wrong.
In early November a small group of people, led by Marit Quist-Corbett, will meet at The Art House Café on Somerset Street. Yes, there’ll be coffee and cake, but also laughter among friends and strangers as they discuss those often-taboo subjects of death, dying and mortality in a positive and open discussion.

WHERE: The Art House Café, 555 Somerset Street (kitty corner from Dundonald Park).
WHEN: Wednesday, November 1st, 1pm to 3pm
For more information, please call or email one of the following:
Marit Quist-Corbett,  mquistycorbett@gmail.com

 

I’m hoping to attend both events so perhaps I’ll see you there! I won’t be wearing my Hallowe’en costume (Spider-Granny) – too hard to eat cake with it on!

 

 

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I’ve been doing lots of reading about death and dying over the past months (so what else is new? you are saying to yourself, I’m sure) and I enjoy sharing some of the great articles I come across. Much of the writing comes from the US – and the differences between our two systems of health care are so great that much of what is written about hospice and end of life care is not directly relevant to Canadians. When I came across this great article from Australia, I immediately wanted to share it. Interesting to note that Australia came 2nd in the world on the rankings of end of life care. I think Canada came 9th. We have much to learn!

When life is coming to a close: three common myths about dying

Dying at home isn’t necessarily a good death

On average 435 Australians die each day. Most will know they are at the end of their lives. Hopefully they had time to contemplate and achieve the “good death” we all seek. It’s possible to get a good death in Australia thanks to our excellent healthcare system – in 2015, our death-care was ranked second in the world.

We have an excellent but chaotic system. Knowing where to find help, what questions to ask, and deciding what you want to happen at the end of your life is important. But there are some myths about dying that perhaps unexpectedly harm the dying person and deserve scrutiny.


Read more – A real death: what can you expect during a loved one’s final hours?


Myth 1: positive thinking can delay death

The first myth is that positive thinking cures or delays death. It doesn’t. The cultivation of specific emotions does not change the fact that death is a biological process, brought about by an accident, or disease processes that have reached a point of no return.

Fighting the good fight, remaining positive by not talking about end of life, or avoiding palliative care, have not been shown to extend life. Instead, positive thinking may silence those who wish to talk about their death in a realistic way, to express negative emotions, realise their time is limited and plan effectively for a good death or access palliative care early, which has actually been shown to extend life.

For those living closer to the prospect of death, being forced to manage their emotions is not just difficult but also unnecessary, and counterproductive to getting the help we know is important at the end of life.

Myth 2: dying at home means a good death

The second myth is dying at home always means a good death. While Australians prefer to die at home, most die in hospital. Managing a death at home requires substantial resources and coordination. Usually at least one resident carer is needed. This presents a problem. Currently 24% of Australians live alone and that’s predicted to grow to 27% by 2031. We also know many Australian families are geographically dispersed and cannot relocate to provide the intensive assistance required.

The role of the carer may be rewarding but it’s often hard work. We know timing of death is unpredictable, depending on the disease processes. Nurses, doctors and allied health professionals visit, problem solve and teach the carer to perform end-of-life care. They don’t move in, unless they’re hired in a private capacity; a possible but pricey alternative. Finally, specialist equipment is required. While this is usually possible, problems can arise if equipment is hired out for a specific time and the patient doesn’t die within that allotted time.


Read more: To die at home or in hospital? Aussies want one but we fund the other


It’s not a failure to die in a hospital, and may be the best option for many Australians. While it would appear that large public or private hospitals may not be the best places to die, in many areas they provide excellent palliative care services. Appropriate end-of-life planning needs to take this into account.

Myth 3: pushing on with futile treatment can’t hurt

A window of opportunity exists to have a good death. Pushing on with treatment that has no benefit or is “futile” can be distressing for the patient, family and the doctors. Doctors are not obliged to offer futile treatment, but unfortunately patients or family may demand them because they don’t understand the impact.

There are cases where people have been resuscitated against better medical judgement because family members have become angry and insisted. The outcome is usually poor, with admission to the intensive care unit, and life support withdrawn at a later date. In these cases, we have merely intervened in the dying process, making it longer and more unpleasant than it needs to be. The window for a good death has passed. We are prolonging, not curing death and it can be unkind – not just for those sitting at the bedside.


Read more: Doctors still provide too many dying patients with needless treatment


The story of a good death is perhaps not as interesting as a terrible one. Yet there are many “good death” stories in Australia. There are likely to be many more if some of the myths that surround dying are better understood.

 

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There’s been lots going on in my life in the past couple of months – and I haven’t been writing as much as I’d like. But I have been reading, listening and talking about end of life care, death and dying, and I’ve been sharing some of the amazing resources I’ve discovered. As I write this, I’m listening to a fabulous interview with Dr. Susan MacDonald, the medical director of palliative care for Eastern Health. She’s an amazing, passionate advocate for palliative care, and she explains things with a clarity and understanding that’s rare.

Here’s the link:

http://www.cbc.ca/news/canada/newfoundland-labrador/tedwalks-podcast-susan-macdonald-1.4279306

She’s funny, bright, wise, and very forthright. I’d love to meet her!

The interview is particularly timely for me because this past week I found myself engaged in a discussion with the RN and PSW on my shift. It was a quiet shift, and we had the time to talk in a way we don’t often have. Issues ranging from the differences between palliative care and hospice (if there are any!), the reasons why people with heart failure tend not to be referred for palliative care, and and why people often think that opting for palliative care means “giving up.” It was a great conversation, and it was wonderful for me to be able to share some of what I’ve learned in my research and writing.

The discussion left me wishing that we had more opportunities to talk as a team, to share our different perspectives and to bring our unique insights to the team.

So please listen to this wonderful interview – and feel free to share your comments.

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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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