"In his book Weller invites us to view grief as a visitor to be welcomed, not shunned. He reminds us that, in addition to feeling pain over the loss of loved ones, we harbor sorrows stemming from the state of the world, the cultural maladies we inherit, and the misunderstood parts of ourselves. He says grief comes in many forms, and when it is not expressed, it tends to harden the once-vibrant parts of us".
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..."
At the End Of Life. A Blog About How We Die. #EOLC #HPM
Click on the link above to read a range of articles from the Blog about End Of Life Care.
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".
Facing life’s end with grace. #EOLC #HPM
"In the end, the more people are ready to have the talk, the more likely it is that the medical industry will offer care that accounts for the vast, nuanced, and fluid decision points facing patients who are short on time.
Dying, after all, is complicated, hard business, and dying well is more complicated, and harder".
Getting end-of-life care right for people with #Dementia. #EOLC #HPM
"Dementia isn't always thought of or recognised as a terminal illness. As a result, many people with dementia do not get the palliative care they need as they approach the end of their lives. Those that do receive it later than they should. This is not good enough".
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
"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".
In ‘When Breath Becomes Air,’ Dr. Paul Kalanithi Confronts an Early Death.
"Part of this book’s tremendous impact comes from the obvious fact that its author was such a brilliant polymath. And part comes from the way he conveys what happened to him — passionately working and striving, deferring gratification, waiting to live, learning to die — so well. None of it is maudlin. Nothing is exaggerated. As he wrote to a friend: 'It’s just tragic enough and just imaginable enough.' And just important enough to be unmissable".
"How Long Have I Got Left?" ~Dr. Paul Kalanithi
"I began to realize that coming face to face with my own mortality, in a sense, had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live".
"Before I go". ~ Dr. Paul Kalanithi
"Time for me is double-edged: Every day brings me further from the low of my last cancer relapse, but every day also brings me closer to the next cancer recurrence — and eventually, death. Perhaps later than I think, but certainly sooner than I desire. There are, I imagine, two responses to that realization. The most obvious might be an impulse to frantic activity: to “live life to its fullest,” to travel, to dine, to achieve a host of neglected ambitions. Part of the cruelty of cancer, though, is not only that it limits your time, it also limits your energy, vastly reducing the amount you can squeeze into a day. It is a tired hare who now races. But even if I had the energy, I prefer a more tortoiselike approach. I plod, I ponder, some days I simply persist".