Against #Grieving in Silence. ~Rachel Stephenson

"When loss enters our lives, understanding how to confront it can be difficult. Rachel Stephenson learned a valuable lesson after a difficult loss and shares her wisdom on what it means to grieve meaningfully.

Rachel is an educator, administrator, and writer. For the past 7 years, she has worked for The City University of New York (CUNY) designing and implementing innovative, high-performing programs focused on civic engagement, workforce development, and youth development for a range of inspiring CUNY students. Launching the CUNY Service Corps in 2013 is one of her proudest professional accomplishments. Rachel holds a Master of Fine Arts degree in Nonfiction Writing from Columbia University’s School of the Arts.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community".

Meeting #Death with Words.

"In richer parts of the world, death is likely to arrive in a nursing home, or in a hospital—precisely where we most dread spending our dwindling hours. The exit from life, as Atul Gawande observes in his treatise “Being Mortal,” has become overly medicalized in recent decades, causing us to forget centuries of wisdom. We have ended up with a system that treats the body while neglecting its occupant. But the discontent is mounting, Gawande says: 'We’ve begun rejecting the institutionalized version of aging and death, but we’ve not yet established our new norm. We’re caught in a transitional phase'."

Reframing Our Relationship to That We Don’t Control. #Death. ~ OnBeing

“ ‘Let death be what takes us,’ Dr. BJ Miller has written, ‘not a lack of imagination.’ As a palliative care physician, he brings a design sensibility to the matter of living until we die. And he’s largely redesigned his sense of own physical presence after an accident at college left him without both of his legs and part of one arm. He offers a transformative reframing on our imperfect bodies, the ways we move through the world, and all that we don’t control.”

#Denial is Tricky. On #Being. @SharonSalzberg

"At our core, we assume that hiding from pain will somehow keep us from feeling it. Of course, trying to shut our minds off to suffering effectively ensures that it will persist, in some form or another… 

Denial is tricky. Sometimes, we think we are not in denial because we recognize the existence of an uncomfortable feeling, but still turn away from it. Our denial voice might say, “Of course I know I am going to die, but why think about it?”

We need not dig deep into all the possible physical maladies we might experience when we die — that’s not the point of opening up to discomfort. The larger point is that each moment becomes immensely powerful when we strip away various denials. We can recognize our fear of death, of change, of letting go of our attachments, and feel the discomfort of that recognition. By being honest with ourselves about our various forms of suffering, we don’t feel more suffering — we create freedom".

#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".

Helping #Children #Cope with #ALS

"When a family member has been diagnosed with Amyotrophic Lateral Sclerosis (ALS) children have many questions and concerns about the person they know and love. We offer these guidelines as a tool to assist your family when talking or sharing information and personal feelings about ALS. You may also want to share this information with other important adults involved in your children’s lives such as teachers and coaches". 

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”.

It's Not About #Dying. ~ Dr. Gian Domenico Borasio. #HPM

"This talk was given at a local TEDx event, produced independently of the TED Conferences. Palliative care is about living, not dying. The fact that we will die is the only certainty that we have in life. Looking back on their lives, dying patients share their insights with us and thus teach us how to live. All we need to do is to listen".

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".

5 Ways Hospice Care's Changing How We View Death. #EOLC #HPM #IPC

"When you think of hospice facilities, you might not conjure up the most pleasant images. But that doesn't change the fact that they have become an extremely important part of our healthcare system. For those of us who aren’t familiar with it, hospice is a type of care for terminally or chronically ill patients who are nearing the end of their lives. Hospice and palliative care programs focus on comfort, rather than treatment or cure, and they offer emotional and spiritual support for loved ones..."

Baby Boomers' Last Revolution Will Be Changing the Way We Die. #HPM

"Each person should have the chance to decide when it is time to shift from health care toward a cure to health care for comfort and pain management, as many doctors choose to do for themselves. That means giving us and our families the information and support they need. Death is not quick and simple, like in the movies. Just as they have learned to do with childbirth, health professionals need to learn to talk to patients and their families about what to expect. That knowledge provides reassurance and a sense of control. It is more important than any advanced directive or pain relief".

There is no inevitability in life that we are less prepared for than #death. #HPM

"There is no inevitability in life that we are less prepared for than death. Where is our guidance for this universal event that every one us will face? Why don't we teach people how to die? Why don't we teach people how to live after someone they love has died? We need to change this. We need to equip people with the tools they will need to cope. This is part of what end of life doulas do. We talk about death, with the living and the dying".

It's time to talk about #end-of-life and palliative care. #HPM

"People working in Palliative care in Canada say the conversations are starting but there is still a dire need for better end of life care".

Misconceptions of palliative care may make people reluctant to avail themselves of help earlier. #HPM

"Lead researcher Dr. Camilla Zimmermann, head of the palliative care program at Princess Margaret Hospital, says there is a misconception about what palliative care is.

Many people believe it is the type of care hospitals offer when they have exhausted all medical options. They think it means that the oncology teams, having run out of cancer fighting tools, then hand off patients to people specialized in helping ease the final days of a dying person's life.

As a result, Zimmermann says, some people are reluctant to avail themselves of the help palliative care teams offer earlier in their cancer journey.

She says palliative care teams — some of which have started to call the service they offer supportive care — collaborate with oncology teams to try to help patients through difficult treatments and the progression of their illness. For the palliative care team, that can mean providing access to home care and to assessments of the needs of the patient and his or her family, among other things.

The aims of both teams are the same, Zimmermann says — prolonging life and improving quality of life".

Inconsistent and inadequate patchwork of palliative care across #Canada needs to be priority. #HPM

"Federal and provincial governments need to guarantee access to palliative care in legislation, the Canadian Cancer Society said Tuesday as it released a report on the state of care across the country.

In its findings, the society said critically ill patients are falling through the cracks of the health care system and improvements are needed to address the patchwork of service that exists.

In the absence of national standards, individual jurisdictions are left to develop their own policies, programs and guidelines that result in inconsistent and inadequate palliative care, the report said".

#Family Speaking out in Support of Palliative Care. #HPM

Click on the photo above to watch the story of one Family sharing their experience following a diagnosis of advanced cancer and their subsequent experience with Palliative Care.

Hospice care: 'This is what dying should look like'. #HPM

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"The goal of the hospice and palliative care is to minimize the suffering of the patients and their families and to make the best of their last days".

Explaining Cremation to Kids.

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"Of course, this is a tough concept for kids this age to comprehend but it's much worse to shield them from this ritual".

How one couple’s loss led to a push for psychological care for kids with cancer.

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"The standards say families should be educated early on about palliative care and its role in helping to “reduce suffering throughout the disease process.” And they say children with cancer should receive “developmentally appropriate” information to prepare them for the treatments and procedures they will undergo".

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".