"If you or anyone you know has advanced illness that isn't meaningfully getting better (or keeps getting worse) in spite of many treatments and hospital stays and doctors' visits then you owe it to yourself to learn more about hospice sooner rather than later. This is especially true for more frail elders with serious illness because the hazards of additional hospitalizations and certain treatment side effects are more serious and more common. Ideally, hospice care is set up on a better day, in advance of a true crisis so that the hospice team and person receiving services can get to know one another and set up truly personalized care. Too many people elect hospice so late in their course of illness that they miss out on many of the benefits".
I'm Trying to Die Here. ~ Rev. Dr. Carla Cheatham
"Our goal is to maximize quality of life for whatever quantity naturally remains for everyone involved. Knowing that we are the interlopers, we strive to adapt to the personality and culture of the person receiving hospice as well as that of their entire family. We pay attention. We listen to stories. We pick up queues and share them with our team members so we can all work to provide as little intrusion as possible as guests in the home (whether “home” is one’s own or a room in a facility)".
When Your Loved One Is Ready for #Hospice Care - and You Aren't. #HPM
“And I had a lot of questions about hospice care, including whether I could stop it if I changed my mind later. (He told me I could stop it at any time, for any reason, and that if I changed my mind again I could resume the services.) The conversation was incredibly stressful. At one point I realized I was holding my breath.
After answering all my questions, Doug looked at me kindly and said, ‘You know, Marie, the real question for the caregiver is how to help the patient have the highest possible quality of life in the time that is remaining.’
That completely changed my thinking about the situation. It gave me a new and positive goal - to bring Ed as much happiness as possible. It led me to think about all the special things I could do for Ed -- visiting him more often, taking my little Shih Tzu to see him, having that violinist come back and play another concert, reading to him from the newspaper, and buying him even more of the stuffed animals he loved so much.”
A New Vision for Dreams of the #Dying. #eolc #hpm
"Dr. William Breitbart, chairman of the psychiatry department at Memorial Sloan Kettering Cancer Center, who has written about delirium and palliative care, said that a team’s response must also consider bedside caregivers: “These dreams or visions can be interpreted by family members as comforting, linking them to the legacy of their ancestry.
But if people don’t believe that, they can be distressed. ‘My mother is hallucinating and seeing dead people. Do something about it!’ Dr. Breitbart trains staff to respect the families’ beliefs and help them understand the complexities of delirium.
Some dream episodes occur during what is known as 'mixed-state sleep' — when the boundaries between wakefulness and sleep become fragmented, said Dr. Carlos H. Schenck, a psychiatrist and sleep expert at the University of Minnesota Medical School. Jessica Stone, the teenager with Ewing’s sarcoma, spoke movingly about a dream of her dead dog, Shadow. When she awoke, she said, she saw his long, dark shape alongside her bed.
Dr. Banas, the neurologist, favors the phrase end-of-life experiences. 'I try to normalize it for the family, because how they perceive it can push them away from that bedside or bring them closer,' she said."
"I See Dead People". #Dreams and #Visions of the #Dying.
"Dr. Christopher W. Kerr is the Chief Medical Officer at The Center for Hospice and Palliative Care, where he has worked since 1999. His background in research has evolved from bench science towards the human experience of illness as witnessed from the bedside, specifically patients’ dreams and visions at the end of life. Although medically ignored, these near universal experiences often provide comfort and meaning as well as insight into the life led and the death anticipated".
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”.
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".