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Archive for the ‘end of life care’ Category

I wrote the blog post below six years ago, as I faced the month of Christmas cheer (and excess) with which we are inundated, regardless of our religious faith or lack thereof. Each year, I find myself re-reading this post, as I remind myself that many many people find this time of year difficult. The loss of a loved one, an illness, an estrangement, painful memories, or longing for the memories of years gone by. And for many of us, the memories co-exist with the happy times and new traditions we have with grandchildren, friends, companions, and colleagues.

This piece is a reminder to all of us to think about those for whom this season is a challenging one.

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You can’t miss the fact that we are approaching Christmas, even if you tried to. Elevators and malls pump out Christmas tunes, newspapers and flyers are full of ads for the newest toys, gadgets, and must-haves. ‘Tis the season to be jolly, we are repeatedly reminded, in case we had forgotten.

But what about those people for whom Christmas is not a season of joy? Many of us set aside food and sundries for homeless shelters, buy toys for underprivileged children, send an extra donation to our favourite charities. It’s great that Christmas provides an opportunity for generosity and gratitude and I have no doubt that these actions do make a different, however small, in people’s lives. Today, though, I am thinking about a largely invisible population – people for whom Christmas has lost some of its magic, whether because of serious illness, a painful separation, or the death of someone they love. Where in this season is the place for these people amidst the shopping and celebration and feasting?

I grew up in a family where Christmas was a “big deal.” Though the gift giving would pale in comparison to the extravagances many people engage in today, still our annual rituals of new vinyl records, a new dressing gown (with a crisp new $5 bill in the pocket), a silver dollar in our stockings, the obligatory item or two of clothing, and a few “special gifts” for each of us. I can still remember the amazing service station complete with car elevator that I received when I was 10. The fact that my not very handy father had spent half the night trying to put it together made the gift all that more special. I’m certain that my sisters have equally vivid memories of their favourite gifts.

When grandchildren arrived, my mother got the chance to embrace Christmas full force. She loved buying special fancy clothing for her four granddaughters, and to “spoil” my daughters with elaborate toys I couldn’t afford. She was in her element filling stockings with trinkets she had found throughout the year – and expensive necessities (a roll of stamps, a pack of subway tokens, bookstore gift certificates).

All that changed when my mother suffered a brain aneurysm in 1991. Though she survived the aneurysm, she was left with considerable brain damage, and could no longer walk, speak clearly, or care for herself. Shopping for Christmas was clearly out of the question. Without our mother’s zest for Christmas, something was missing in “family Christmas.” It wasn’t about the presents – it was about how much my mother loved giving them. She took so much joy in being able to surprise us, to help us, to make us happy.

When my sister Carol died in 1997, “family Christmas” seemed to end.  Carol was that person in your life who always knew exactly what you needed, even though you didn’t know it until the you opened up the present. A set of dinosaur rubber stamps for my older daughter who loved dinosaurs and writing stories. A kit to make beads from wrapping paper. A beautiful sweater suitable for work for me (no one but Carol ever dared to buy me clothing). As with my mother, it wasn’t the gifts themselves that mattered. It was the fact that she knew us SO well.

It’s not that Christmas stopped after my mother became ill and my sister died. But that particular carefree (for me!), joyful, special family Christmas did.

Strangely, it’s through volunteering in hospice that Christmas was transformed yet again. Each year, the hospice asks people to take on extra shifts, as regular volunteers fly off for family gatherings or stay home to cook and be with their own families. The year I graduated from the hospice course (2001) I eagerly signed up for extra shifts. I expected the hospice to be a sad and dreary place, as families celebrated their last Christmas together, or their prepared for their first Christmas without Mom (or Dad).

When I walked into the residence that year, I could hear singing coming out of Room 4. Jingle Bells. Joy to the World.

“Who’s being so inappropriate as to sing Christmas carols,” I wondered. I soon discovered my answer. Room four was filled with family, bearing gifts, shaking Christmas bells, trimming the tiny tree placed on the nightstand. And sitting up in the hospital bed was the queen of the day, wearing a Santa cap jauntily placed on her head, and joining in the festivities.

“You folks sure know how to celebrate,” I remarked.

“Oh yes. That’s the kind of family we are. Since she can’t come home for Christmas, we brought Christmas to her!”

I have never forgotten that image, though it’s been 11 years. Joy in the midst of dying. Celebration of life.

I learned that year that many patients “hold on” until Christmas, dying shortly after. My own mother waited so she could be with her family one last time. It is indeed a special time – not because of the presents, or the turkey, or even the beautiful music. It is special because it is a celebration of life – new life – and life well lived. And so, as I approach this holiday month, I’ll remember those faces in Room 4 that day, their joy and cheer and love. And hold all of this in my heart.

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We live in a culture that places a tremendous value on multi-tasking. Books, articles online, in magazines, and in business sections of newspapers extol the virtue of being able to focus on multiple tasks at the same time. This goes well with the “cult of busyness” that seems to have overtaken the Western world. Dare to ask a colleague how they’re doing as they race past you down the hallway, and they’re likely to shake their head and respond, “I’m so busy.” Indeed, busyness seems to be synonymous with “important” in the modern lexicon.

For the most part, these values do not hold sway in a hospice. At the end of life, everything slows down, and staff, volunteers, and family members tend to mirror the pace of each resident’s dying process. As I’ve written on this blog before, this focus on being fully present is one of the aspects I find most beneficial at hospice. I cannot properly be of service to residents and their families if my mind is racing with a million details and tasks.

Nonetheless, sometimes busyness does seem to intrude even in the sacred space of the hospice. I’m not talking about the genuine emergencies which do sometimes occur. I’m referring to the tendency of people sometimes to assume that if you do not appear to be “busy,” you are not actually doing anything and are therefore ready to be interrupted.

A recent hospice shift provides graphic evidence of the perils of interruptions.

Though not all the beds were full that day, there was no shortage of tasks to occupy my time. A bed to be made up, dishes to rinse and put in the dishwasher, lunches to make, coffee to brew. You get the idea.

About three quarters of the way through my shift, a staff member popped into the volunteer room where I was writing notes in the volunteer communication book. “Room 4 is ready for you to take her order.”

I quickly made my way to Room 4, where I found a woman wrapped in a quilt, sitting at ease in a large Lazy-boy chair.

“I hear you’d like some food!” I began, perching on the edge of her bed.

Immediately the bed alarm began screeching, alerted to movement by my weight.

“Oops,” I said, jumping up and pressed the reset button on the alarm. “What would you like?”

“What do you have?”

“Well, it looks like you had chicken shepherd’s pie the other day. Would you like that again?”

“No, I had that yesterday. What else do you have?”

“I could make you an egg salad sandwich.”

“With dressing?”

“Of course! White bread?”

“Yes, just one slice.”

“Coming right up,” I said, happy to have arrived at an item that appealed to her.

En route to the kitchen, a staff member called out, “The family in room 2 needs a tour.”

“Sure,” I said. “Right after I finish this.”

The kitchen was a busy place when I entered. A family member was heating up some stew for his lunch. “Do you have something I can store the rest of this in?”

“Why don’t you heat it up in this bowl and save the rest in the original container?” I suggested. “And I just made some fresh coffee if you’re interested.” I reached into the drawer to grab him a cup.

When another family member joined us, I offered her a cup of tea, pointing out the range of choices Tim Horton’s has generously donated to us.

“OK,” I counseled myself, “time to make Mary’s lunch.”

I checked the freezer for a small container of shepherd’s pie, removed the lid and popped it in the microwave. I had a nagging feeling there was something else she wanted, but carrots were the only thing that popped into my mind and I knew she’d rejected that.

When the microwave beeped, I took out the bubbling container and transferred it to a bowl. I added the cup of very weak tea she’d ordered (“Just put the bag in and take it right out again!”) and placed it on the tray. I felt proud of my ability to focus on the task at hand in the midst of competing demands!

When I presented the tray to Mary, she looked at me with horror.

“I asked for an egg salad sandwich,” she said.

“Oh my God, I can’t believe I did that. I am so sorry.” I kept repeating that over and over again. “I’ve never done that in my life. I am so dumb.”

“Don’t worry about it,” she commanded, hoping for an end to my litany of self-judgment.  “Just make me an egg salad sandwich.”

To make sure I wouldn’t forget her order again, I wrote “egg s. 1 w. bread” on my palm.

When I returned with her order a few minutes later, she gave me a look of approval. I waited until she’d taken her first bite and pronounced it “just what I wanted,” before heading off to my next assignment.

I’d like to think I’ll never make that mistake again but I know there’s a good chance I will (though not the very same one, I hope!).  I know that we are all subject to information overload. I hope I will remember to  ask someone if they are busy before I interrupt them. And I hope that my colleagues at hospice will do the same. That way perhaps we can all remain in the moment.

 

 

 

 

 

 

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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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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.

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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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Last week, Canadians were shocked and saddened by the tragic circumstances surrounding the death of an Ottawa woman. An op-ed piece written by her husband in the Ottawa Citizen was followed by a radio interview on CBC’s Ottawa Morning. Here are the links to the article and radio story:

http://ottawacitizen.com/opinion/columnists/adams-what-my-dying-wife-and-i-never-knew-about-palliative-care

http://www.cbc.ca/news/canada/ottawa/programs/ottawamorning/palliative-care-1.4194365

The story provides graphic evidence of the shortcomings of palliative care in this country. As the Canadian Hospice Palliative Care Association has documented, only 17 to 35% of Canadians have access to hospice palliative care. Many factors result in that variation but even at the high point of 35%, the vast majority of Canadians are not receiving the care they need.

Those of us who have experienced palliative care can attest to the dramatic difference it can make in the lives of terminally ill patients and their families. As many experts have argued, palliative care should be available to patients from the onset of a life-threatening illness to help them deal with pain and other symptoms associated with their illness and to provide them with the knowledge needed to make informed choices.

When my sister was dying 20 years ago, there were (to my knowledge) no pain and symptom management teams or facilities we could access to help us with her care. It was our incredible good fortune to find an amazing palliative care nurse (through a visiting nursing service) who guided us through the final days. Her name was Isabelle (“Is a bell necessary on a bicycle?” she used to joke when I had trouble remembering her name) and she followed us from home to hospital when my sister had to be transferred. She patiently explained the significance of Cheyne-Stokes breathing (the “death rattle”) to a very frightened sister (me), offered non-judgmental advice on the choices we faced (e.g. whether oxygen might help), and reminded me that we were doing a great job.

Today, nurses like Isabelle are working in hospitals and residential hospices, and visiting patients in their homes (including long-term care facilities and retirement residences). They ease the journey towards death for both patients and their families. I wish everyone could have an Isabelle (or a Linda, Valerie, Marie, Esther … ) by their side at this difficult time in their lives.

In my view, there is nothing wrong with palliative care that greater commitment, education, financing, and access wouldn’t fix. We need greater emphasis on palliative care in medical schools and nursing programs. We need the federal government to truly commit to and fund an end of life strategy, and we need our provincial governments to ensure access to high quality hospice palliative care for all Canadians, regardless of where they live.

Until then, I fear that more people will experience the needless suffering that the article above describes. Let’s all work together to make sure that doesn’t happen.

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