"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)".
How to Talk About Dying.
“Too many people we love had not died in the way they would choose. Too many survivors were left feeling depressed, guilty, uncertain whether they’d done the right thing.
The difference between a good death and a hard death often seemed to hinge essentially on whether someone’s wishes were expressed and respected. Whether they’d had a conversation about how they wanted to live toward the end…
We still need to transform the cultural norm from not talking about how we want to live at the end of life to talking about it. The real work to close the gap is not just for doctors and patients. It’s for mothers and daughters, husbands and wives, families and friends. We have to bring people to the kitchen table to talk with those they love to have the conversation. And to do this before there is a crisis. Not in the I.C.U.”
In #Palliative #Care, #Comfort is the Top Priority. #HPM
"Although 40 percent of their palliative care patients can expect to be cured, 'there clearly still are both patients and oncologists who have an inappropriate association in their minds,' he said. 'They still associate palliative care with giving up.'
To the contrary, palliative care can help patients live fully, regardless of their prognoses."
This is not Casualty – in real life #CPR is brutal and usually fails. #ACP #Awareness
"Modern medicine, however, still shies away from discussions about natural death and dying, and is more comfortable in the realms of what can be done. Doing something always trumps doing nothing. Healthcare professionals have become willing interventionists, and we cannot stop meddling, interfering and attempting to fix.
Many people I speak to presume that if the label “Not for CPR” or “DNACPR” (Do Not Attempt CPR) is added to their notes, this might preclude them from other resuscitative treatments such as antibiotics, fluids and blood transfusions. Dispelling this myth takes time and reassurance. Patients can still have active, resuscitative measures if they become increasingly unwell, but remain not for CPR for when their heart stops".
A Loud Voice: Dear Dead Mother. Conversations about #life, #love, and #loss with the mother I've never known. #Grief #Bereavement
"Silence is not always self-imposed. Sometimes those of us who want to grieve out loud feel immense pressure to stay quiet and move on. This pressure can be communicated to us in so many ways – when people look away, when words are whispered across quiet rooms, when we are explicitly told not to dwell on negative things. When the people we love most and want to protect seem to fall apart when we talk about the dead".
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".
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".
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”.
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".
#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".
Explaining Cremation to Kids.
"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.
"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".
Supporting Grieving Preschoolers. The Dougy Centre.
"Explaining death to a young child can feel overwhelming and intimidating. These tips may help you navigate how to talk with and support grieving preschoolers after a death".
Patients aren’t told that death is near until too late. We can do better.
"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
"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.'
"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".
"You don't get over bereavement, you get on with it": Mumsnet.
"Have the boys 'got over the worst of it'? Who knows? We take every day as it comes. We are on a journey that takes us on a bumpy and unpredictable ride, with little in the way of helpful signage. Just because we have faced a huge trauma, does not mean that we are exempt from facing further difficulties en route".
The Year I Ran Away from Christmas: A Mother’s Perspective on Grief and the Holidays.
"I have no need to run away during the holidays anymore. The other day my daughter, now a young woman, reminded me that Christmas is her favourite time of the year. I smiled and said, 'It’s mine too’."
Click the image above to read more about Judy's experience.