Advance Care Planning

Almost all Canadians would benefit from palliative care. Only one in seven can actually access it at end-of-life

“The key to providing decent palliative care is a little bit of basic planning. Four conditions – cancer, cardiovascular disease, COPD (lung disease) and diabetes – account for 70 per cent of deaths.

Those chronic conditions all have fairly predictable courses of illness in the terminal phase. You don’t get diagnosed with lung cancer or heart failure one day and die the next. It’s a months-long process and providing pain relief (palliation) should be standard, and a priority.

Two in three people receive home care in their last year of life. But only one in seven receive palliative care in the home.

That’s the failure point – and that’s what we need to fix.

There needs to be a commitment – philosophical and financial – to bringing palliative care to patients when they need it and where they want it.

Not everyone can (or should) be cared for at home in their final days. It’s back-breaking, emotionally-draining work for loved ones. Yet many would do so willingly and lovingly.

But they run up against a gross number of barriers, ranging from difficultly getting home visits from physicians (who are poorly remunerated for that work in many provinces), lack of nursing support (because of caps on home care hours), and absurd rules that mean drugs taken at home are not covered by medicare.

All the problems raised by the CIHI report are easily resolved. For example, having paramedics provide palliative care can eliminate transfers to hospitals. Sending doctors and nurses to homes or nursing homes can free up hospital beds – and save money in the process. Not to mention that, at the very least, people deserve a modicum of dignity in their dying days.

The whole point of palliative care is to improve quality of life. We shouldn’t let bureaucratic and structural inadequacies undermine that necessary and noble work.“ by the brilliant André Picard via The Globe and Mail

Honoured to be on Faculty for the National Learning Institute hosted by the Canadian Hospice Palliative Care Association 

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Honoured to have been on Faculty for the National Learning Institute hosted by the Canadian Hospice Palliative Care Association (CHPCA) in Ottawa (June 14th-16th).

The CHPCA’s Learning Institute brings together healthcare professionals from across the country for an intense learning weekend. The program is directed towards intermediate and advance learning levels and is facilitated by specialist Hospice Palliative Care Clinicians, Educators and Researchers from across Canada, together with international leaders, making a sophisticated caliber of educators and mentors. This is the only event of its kind in Canada.

For information about the event, please visit: http://conference.chpca.net/about/

Extremis Documentary and Discussion

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Excited to co-host our next free public event with the Department of Family Medicine, Division of Palliative Care at McMaster University. This evening is part of our compassionate community initiative, “The 100% Certainty Project. Death: Something to Talk About". We will: feature the book “Extreme Measures" by Dr. Jessica Nutik Zitter; view the remarkable Oscar-nominated documentary “Extremis” from Shoshana Ungerleider, MD; provide Advance Care Planning resources from the Canadian Hospice Palliative Care Association; and close the evening with a panel discussion comprised of clinicians and educators. This free public event in support of National Advance Care Planning Day. To register, please visit: Eventbrite

Death: A Part of Life. A 5-Part Mini Series (podcast)

Am honoured to have been a guest panelist on the final instalment of Death: A Part of Life - Part 5: The Grieving Process.

This informative 5-Part radio series with the Dr. Bob Kemp Hospice aired on CHML 900. Each week panelists including caregivers and healthcare professionals convened to open up a conversation about dying, death, grief and loss. The series explores issues such as: coping with the diagnosis of a serious illness; demystifying hospice palliative care; exploring available supports and services; advance care planning; the dying process and grieving which ultimately impacts us all.

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The links to the podcasts of Death: A Part of Life are listed below:

 Death, A Part Of Life - Part 1: Palliative Care

It’s a fact of life that at one point we all will die. But is it all as simple as that? Bill Kelly and the Bob Kemp hospice will be discussing grief, relief and the acceptance of passing away. On today’s show we discuss what happens when you’re told you don’t have much time left, and whether healthcare is asking too much of caregivers, and whether people are prepared for palliative care.

Death, A Part Of Life - Part 2: Changes To Palliative Care.

For our second show, we will discuss what the palliative care system is now, how it works and what changes need to be made. What does one of our local MPPs hear from his constituents about healthcare and in particular, palliative care? How would changes affect patients? Does fear have a hold on how we make our decisions once we’re diagnosed as palliative? An example of this is whether to choose palliative care or medically assisted death.

Death, A Part Of Life - Part 3: Religion and Palliative Care.

We continue our series this week with two topics. The first one will be discussing the experience of death. Everyone treats death in our world differently. But is it strictly a medical experience or is it a spiritual one? In our second half, we will talk about access to palliative care services in various sectors of our society. How do we help the vulnerable and the community obtain access to proper palliative care?

Death: A Part of Life - Part 4: Bucket lists and preparation.

Life should be celebrated at all stages, whether it be infancy, adulthood and as life comes to a close. So how can we make the most out of life? How can those who are in palliative care achieve their “bucket list” dreams before they pass, and how does it apply when it comes to their own personal circumstances? How do we define a “bucket list”? How wise is it to be prepared for eventual health issues? How should we plan for advanced care and how does it affect the family? How do we navigate through the difficult decisions and pain to provide care for loved ones who are palliative?

Death: A Part of Life - Part 5: The grieving process.

The final instalment in our series sees us discussing grief and how this isn’t just an event that happens in life but a process that families have to go through. How do families grieve the loss of a loved one? How can we support one another and how does grief affect children?

Source: Global News. AM 900 CHML

Informed Patient? Don’t Bet On It

"We’ve seen too many patients regret decisions that they made without fully understanding their options, or the possible outcome. We encourage our patients, and our colleagues, to be partners in what are often life-changing decisions about health care."

Read the full article The New York Times

5 ways to improve care at the end of life

"All of us face the difficult prospect of a parent or loved one suffering from an illness that ultimately leads to death. When that time comes, we will want to ease their physical and emotional pain, respect their wishes, and allow them to die with dignity — the same things we will want for ourselves.

The way that Americans die has changed but, unfortunately, our medical system hasn’t kept up. It was designed at a time when death was often sudden or declines in health were relatively rapid. These days it is much more common for people to live longer with multiple chronic conditions, and we have the technology to prolong life as death approaches. End-of-life care is fragmented, intensive, and costly — and patients’ wishes are often lost due to poor communication."

Read the complete article at: STAT

The diagnosis of a serious Illness. Important considerations to discuss with the Healthcare Team

Starting a Conversation with Your Healthcare Team

Whether you or a loved one have been newly diagnosed with a serious illness, or have been told your disease has progressed, you will have to make decisions about treatment. You may have many thoughts and emotions at this time. This can be a time of uncertainty and it is common to feel worried. It can be helpful to ask your healthcare team questions about what to expect, how to plan and what support and resources are available to you and your family. 

It can be helpful to ask your healthcare team questions about your illness so that you can best understand your treatment options. The following is a list of questions that may help you to make informed decisions about your plan of care. Please ask these questions if they are helpful in guiding you and your family, or ask whatever questions are important to you. It can be helpful to bring your list of questions to your medical appointment and record/write down the answers. If you have the support available, you can have someone accompany you to your appointments to listen and help record the details. 

Some questions you may ask your Healthcare Team: 

• Is the condition short or long-term? Reversible or irreversible? 

• Is the Illness curable or incurable?

• What types of treatment are available to treat the illness/condition? 

• Where is this treatment offered? Hospital? Clinic? Home? 

• What is the goal of treatment (cure, manage pain/symptoms, improve function, extend life)? 

• If the goal of treatment is to extend-life, how long does the average person live while receiving this treatment? What about those who do not receive this treatment? 

• How often is this treatment successful? 

• Does having this illness/condition impact the effectiveness of treatments/
interventions one might receive in an Intensive Care Unit? 

• What are the common risks and side effects of this treatment? Are there any possible dangers connected to this treatment? 

• Where and how often will I receive this treatment? How long do you expect this treatment to continue? 

• Is there a financial cost associated with this treatment? 

• When and how will you know if these treatments are working? 

• When or why might these treatments stop? If this treatment stops, what are other treatment options? 

• How will this treatment impact my life? What are the expected physical, emotional, psychological and practical issues? 

• What type of additional support is available to me? What about my family? 

• What are the physical, emotional, psychological and practical resources that
can help? How do I/my family access them?

It is important to take time to have conversations about your treatment with your healthcare team. Please ask questions that are important to you. Honest and open communication about your healthcare is so essential. 

How the United States Is Changing End of Life Care @attn

“As people live longer and medicine becomes more advanced, doctors have more ability than ever to hold off death. Yet many people put virtually no thought into whether they actually want their lives extended past a certain point — leading to a raft of unnecessary, unhelpful, and possibly unwanted medical procedures shortly before a person's death.”

Having tough end-of-life conversations — before it's too late

“ ‘Because by that time the patient is too sick to be able to have a voice in their own care, their family members have never had this discussion with the patient because no one guided them,’ said Periyakoil. ‘So as a result, they're sort of making these very high stakes decisions in the dark.  They, because they love the patient so much, are caught up in the deep, emotional trauma and it's very hard for them to be able to make decisions.’ 

If family members can’t speak on behalf of the patient, Periyakoil says aggressive, heroic measures will generally be used to prolong the patient’s life.

‘The system default is to do everything possible, every treatment possible, even though the treatment might be ineffective and the treatment may be something the patient doesn't want,’ said Periyakoil.”

LETTING GO: What should medicine do when it can’t save your life?

“People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.”

Why Talking About Death Is the Key to the Longevity Revolution

 

"Now, in the midst of a longevity revolution with a passion to create new rituals and connections that help a community to, yes, thrive, we are recognizing that dying is also a profound and shared human experience. Its time to talk about it."

Why Talking About Death Is the Key to the Longevity Revolution by Ellen Goodman

 

Why is it so hard to talk about dying? @whenyoudieorg #hpm

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"When heading into the unknown unprepared, we humans are rarely at our most confident. And when it comes to death, we have plenty of reason to feel anxious. It’s times like these that we need to hear from those who’ve gone before us. And that’s what our latest WYD In Focus provides: candid accounts from family members and caregivers who’ve been present at the deaths of loved ones—because understanding what happens at the bedside might surprise you."

Source: When You Die

The End Game: Conversations about Life and Death. A Free Public Event. Oct. 2nd 2016

Please join us as we host this free event. For many people, talking about end-of-life is uncomfortable or even taboo. But sooner or later, we all die. This is an upbeat, interactive session that provides evidence-based tools regarding advance care planning, hospice, palliative and end-of-life care. Let's talk. Do you have an End Game?

For more information or to register, please visit Eventbritehttps://www.eventbrite.ca/e/the-end-game-conversations-about-life-and-death-tickets-27665945588?aff=efbevent

‘Extremis’ Trailer: Netflix Documentary Examines Realities of End-of-Life Care

"The realities of death are not easy to confront. That much is clear in the trailer Netflix just released for “Extremis,” an original documentary short exploring the harrowing decisions families must make for their loved ones in urgent end-of-life cases relying on machine-based life support.

'We’re all gonna die…and it’s good to have a little bit of a say in how,' says Dr. Jessica Nutik Zitter, the palliative care physician featured in “Extremis,” as we see images of families, doctors and patients in the midst of facing death daily.

The trailer depicts the access granted to Oscar- and Emmy-winning filmmaker Dan Krauss (“The Kill Team”) into the ICU unit of an Oakland, California public hospital. Krauss attempts to intimately examine “the intersection of science, faith and humanity” by observing personal, real-time accounts of how complicated and emotionally wrought the dying process becomes when there are opportunities for choice in death.

The 24-minute film premiered at Tribeca Film Festival in April and the San Francisco International Film Festival on Saturday. “Extremis” is set to release globally on Netflix on September 13."

Source: IndieWire. September 6, 2016

"Extremis" Trailer

The End Game: Conversations about Life and Death #hpm #ACP

Throughout life, we celebrate milestones - weddings, births, anniversaries - but the milestone that we are most often afraid to confront is one of the most impactful - death. 

For many people, talking about end-of-life is uncomfortable or even taboo. But sooner or later, we all face death. What fears are holding us back from having essential conversations that will improve our own lives and the lives of those we care about? 

We understand that death is informed by the lived experience and want to create opportunities for the lived experience to be better informed. We have just launched a new series creating public forums to empower people to have conversations about living and dying. We want to foster opportunities for the general public, healthcare professionals, first responders, health science students, residents of long term care, financial planners, faith communities and community organizations to talk about living and dying. We strive to normalize conversations about living and dying in a non-judgemental, non-denominational, upbeat and interactive session. We aim to provide attendees the opportunity to consider their values and receive credible resources regarding advance care planning and end-of-life care.

For more details about our free event or to register please follow this link to EventBrite

Hacking the #Hospital #Death. When you Can't #Die at #Home. @TheLizArmy #ACP

“Spoiler alert: we are all going to die

One thing I have noticed as an “empowered patient” is that most people don’t talk about death and dying. We might think about it, but we don’t plan in advance or communicate what we would want if we ever were put in a position where we could not speak for ourselves. I understand. It is an uncomfortable topic.

According to a 2012 report by the California Health Care Foundation, 82% of Californian’s think it is important to put your end of life wishes in writing, yet only 23% have done so. Why is this important?

For one thing, doctors are trained to save people, and without a medical order or an advance directive, a medical team will, by default, try to save your life by all methods possible…

As a relatively healthy 36-year-old, saving my life by all methods possible actually sounds like a good idea! But if I was dying, say from an advanced brain cancer, there is no amount of CPR in the world that is going to cure me of cancer… 

The beginning of the end

…The medical team gave J medication to take away any pain he may experience. They removed his breathing tube, and unhooked all machines except for the one monitoring his heart beat. Quickly, his bed was moved to the sunny room where his friends, including myself, were waiting outside by the window.

As soon as the medical team cleared out we poured in. One person set up the speakers. Another friend was ready with the iPod. The door to the medical area was closed. The rest of us swarmed in around him: hands placed on his hands, his legs, his feet. The room was small, so some hovered around the perimeter and in the doorway to the open air…

We fell silent and the first song began…

A friend said “Orange Sky” held a lot of meaning for J. I had never heard this song, but now I will never forget it. I watched J’s heart rate decrease during the first two-thirds of the song, from the low 30s to zero. The monitor began to ding. A friend pushed a button, silencing the sounds. I held J’s feet.

We listened through the end of the song, with our faces on J’s, tears pouring out of our eyes. I was sobbing. We were devastated.

No one danced.

When the song ended there was silence.

Then the scene from a movie played out: A doctor wearing a white coat walked into the room. He donned a stethoscope and raised the end to J’s chest. His hand moved to various areas of our friend’s chest, and down and around to his stomach. He raised each of J’s eyelids to shine a flashlight into the pupils looking to see if they would constrict. The pupils did not move. The doctor looked at the clock and said, “It is 6:11. Take as long as you need.” He exited the room. End scene.

We all stood looking at J for a long time. Then the music began again… ‘We Could Be Heroes,’ by David Bowie.

The end

The best way to capture your healthcare preferences is by having a conversation with your loved ones, appointing a medical decision maker, and then documenting your preferences in an advance healthcare directive.”

My Gift of Grace. Helping everyone have better conversations about end of life.

"My Gift of Grace is a game that helps everyone have better conversations about end of life. These conversations are challenging, but we can rise to the challenge together, and to prove it, we hold public games in Philadelphia on the final Friday of every month.

The game can be played by families, co-workers, teams, strangers, or a mix of any of these. There are no age restrictions or experiences you need to have before you play. The game adjusts itself to the level of comfort of the players and to how long a group wishes to play.

Get the game at mygiftofgrace.com, or find out about our public engagement work at ourcommonpractice.com "

#Canadian Virtual #Hospice. Information and #Support on #Palliative and #End-of-Life #Care, #Loss and #Grief. @VirtualHospice

"The Canadian Virtual Hospice provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers and educators."

#Prepare for a good End of Life. #ACP #InformedChoice #EOL. Judy MacDonald Johnston

“Thinking about death is frightening, but planning ahead is practical and leaves more room for peace of mind in our final days. In a solemn, thoughtful talk, Judy MacDonald Johnston shares 5 practices for planning for a good end of life.”