When a child is dying, the hardest talk is worth having. #PedPC

"Conversations about the end of life are hard for most people. But they can be especially sensitive for parents guiding children through terminal illnesses. They often struggle to discuss death because they don’t want to abandon hope; children, too, can be reluctant to broach the subject.

But pediatric specialists say the failure to discuss death — with children who are old enough to understand the concept and who wish to have the conversation — can make it harder for all involved.

A conversation could help children who are brooding silently suffer less as they approach death. It would also ensure parents know more about children’s final wishes".

#Dying is About #Living. ~ Metastatic Me

"One lives with a terminal illness by taking each day as it comes.  In the beginning, I would tell myself that I wasn't going to die that day, and that I wasn't going to die the next day or even the next week.  After time, the days started to accrue.  Slowly but surely, plans were made; goals were set.

And so I learned that dying is really about living.  

It's about taking each day for what it is, piecing together something good in it, and moving on to the next day.  It's about planning for the future, while simulatenously planning for a future without you.  It's about understanding the limitations that being sick puts on you, accepting those constraints, and doing things anyway.  It's about simplifying your day to day life to enjoy more time to do the things that bring you joy".

A thank you letter to David Bowie from a #Palliative #Care doctor

“So… to the conversation I had with the lady who had recently received the news that she had advanced cancer that had spread, and that she would probably not live much longer than a year or so. She talked about you and loved your music, but for some reason was not impressed by your Ziggy Stardust outfit (she was not sure whether you were a boy or a girl). She too, had memories of places and events for which you provided an idiosyncratic soundtrack. And then we talked about a good death, the dying moments and what these typically look like. And we talked about palliative care and how it can help. She told me about her mother’s and her father’s death, and that she wanted to be at home when things progressed, not in a hospital or emergency room, but that she’d happily transfer to the local hospice should her symptoms be too challenging to treat at home.

We both wondered who may have been around you when you took your last breath and whether anyone was holding your hand. I believe this was an aspect of the vision she had of her own dying moments that was of utmost importance to her, and you gave her a way of expressing this most personal longing to me, a relative stranger.

Thank you”.

Palliative Care, a different voice in #Healthcare. ~ Dr. Timothy Ihrig. #HPM #QOL

"Dr. Timothy Ihrig explains the benefits of palliative care that prioritizes a patient's personal values and navigates a serious illness from diagnosis to death with dignity and compassion".

Making a living will is a good idea. Telling people about it is even better. #HPM #ACP

"The problem, of course, is that patients are reluctant to thoroughly advocate for their end-of-life preferences — and to do so with their loved ones’ involvement".

Patients aren’t told that death is near until too late. We can do better.

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"Oncologists, cardiologists, and other specialists can often predict a patient’s rate of decline based on a specific disease, Obermeyer said. But patients, particularly those who are elderly, often suffer from more than one serious illness that make it more difficult to predict when they’re near death. So a pulmonologist might treat someone’s pneumonia, for instance, without recognizing it signals a broader decline".

"A parting lesson from my parents". ~Andrew Dreyfus

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"As I have become more involved with this work, I have wondered whether the CEO of a large health plan is the right person to talk about end-of-life care. But I only have to remember how important this issue was to my brother and my parents to realize that — in this case at least — my personal experience should inform my professional actions. Everyone, regardless of economic, cultural, racial, or geographic differences, must have their choices and values heard and respected. Everyone deserves the chance to live the best life possible, to the very end".

Op-Ed 'I have terminal cancer. And I'm dying in a yearish.'

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"I understand that my infinitesimally tiny piece in all this is coming to a close. Letting go will be difficult, but death has its own clock. So I will take solace in the idea that, once gone, I may come to occupy a small space in the hearts of the people who loved me most. And perhaps from there, I will be a source of a few simple reminders: Time is limited. Life is miraculous. And we are beautiful".

Dignity, Respect and Choice: Advance Care Planning for End of Life for People with Mental Illness.

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"Dignity, Respect and Choice: Advance Care Planning for End of Life for People with Mental Illness is a two part resource that will help support people with mental illness, their families and carers, and health professionals with the complex issues which might arise around Advance Care Planning for End of Life".

Words to Live By...

"There’s an irony about end-of-life conversations. When done correctly, they’re really not about the end at all. In fact, they are probably more about life than any other conversation you’ll ever have".

Toward Evidence-Based End of Life Care. ~NEJM

"The disquieting patterns of end-of-life care in the United States have been well documented. In the last month of life, one in two Medicare beneficiaries visits an emergency department, one in three is admitted to an intensive care unit, and one in five has inpatient surgery. But one of the most sobering facts is that no current policy or practice designed to improve care for millions of dying Americans is backed by a fraction of the evidence that the Food and Drug Administration would require to approve even a relatively innocuous drug".

Inpatient Hospice Palliative Care Directory free via iOS and Android.

"Although some people hope to remain at home for the duration of their illness, many people find that admission to an inpatient setting can also be helpful. The inpatient care settings in the directory include palliative care units, residential hospices and dedicated palliative care beds within local hospitals. Inpatient hospice palliative care support includes 24 hour care, specialist pain and symptom management and psychosocial support for patients and families.

The map provides access to a directory which includes more information about inpatient hospice palliative care settings across Ontario. The list of facilities below may not be complete - there may be hospice palliative care settings which are not in the directory.

For contact information and details about the facility, click on a specific location. If you want more information, contact the hospice or palliative care program directly".

This App Will Help You Sort Through Your Views On Dying.

"There are apps for nearly everything -- ordering food, catching rides and finding dates, to name just a few of the common tasks people accomplish via a swipe of a screen. Now, a Boston-based company wants to make thinking about and planning for death just as simple.

Cake, as in “a piece of cake,” is a website and soon-to-launch app that asks people a series of yes-or-no questions about the end of their lives in order to help them think about certain issues, plans and needs. The topics include funeral preferences and financial planning, as well as whether there are places people want to see before dying and how satisfied they would be with their relationships if they died tomorrow.

'One of the biggest problems right now is that even if you want to have these conversations, most of us have no idea where to start. It's daunting and overwhelming,' Chen said.

'Even though we know ourselves, we may not truly understand our own values around end of life because most of us haven't spent much time thinking about it. We developed the app as a way to ease people into thinking about the end of life'.

The app is targeted toward users who want to talk about dying to their loved ones, as well as those who want to share their end-of life-wishes with their doctors and caretakers.

'We interviewed dozens of health care professionals and routinely heard doctors say that bringing up advance care planning ‘is the hardest part of my job.’ Even doctors who are trained in how to have these conversations find it challenging to bring up,' Chen said. 'Additionally, there's often not a lot of time at the doctor's office. It makes sense to provide a synchronous tools that empower people to think about things on their own and with their families while they're in the waiting room, or at home'.”