"Over a cup of coffee, a little cake — and sometimes beer — people meet to talk about death and fear of dying in the death cafe..."
Listen to this episode of The Current for more.
The End Game: Conversations about Life and Death #hpm #ACP
Throughout life, we celebrate milestones - weddings, births, anniversaries - but the milestone that we are most often afraid to confront is one of the most impactful - death.
For many people, talking about end-of-life is uncomfortable or even taboo. But sooner or later, we all face death. What fears are holding us back from having essential conversations that will improve our own lives and the lives of those we care about?
We understand that death is informed by the lived experience and want to create opportunities for the lived experience to be better informed. We have just launched a new series creating public forums to empower people to have conversations about living and dying. We want to foster opportunities for the general public, healthcare professionals, first responders, health science students, residents of long term care, financial planners, faith communities and community organizations to talk about living and dying. We strive to normalize conversations about living and dying in a non-judgemental, non-denominational, upbeat and interactive session. We aim to provide attendees the opportunity to consider their values and receive credible resources regarding advance care planning and end-of-life care.
For more details about our free event or to register please follow this link to EventBrite
#Palliative Care is not about #dying, but about quality of #living @JMyersPallCare #hpm
There are a multitude of misconceptions surrounding Palliative Care - what it is and what it isn't. Sadly, many are not open to the prospect of Palliative Care because it presented as a departure from "active care" or moreover they believe that Palliative Care is only provided at end of life. It is in fact so much more than that... I truly appreciate this article demystifying the scope and breadth of Palliative Care written by Dr. Jeff Myers, a Palliative Physician, empathic clinician, extraordinary advocate and educator...
"At a time when assisted dying dominates discussion about end-of-life care, I think it’s important to address public fears around palliative care so that people can use the information to improve their quality of life.
Palliative care is not what happens when all treatments have failed. It does not mean “giving up” or “stopping the fight.” If you are fighting cancer or Lou Gehrig’s disease, palliative care means a team of people — such as doctors, nurses, social workers and others — will help make sure you have what you need to continue fighting.
As a palliative care physician, I am deeply committed to improving end-of-life experiences for people and their families. My focus is not on the disease itself but on the impact it can have, like relieving the severity of symptoms with the overall goal of improving quality of life.
It’s my job to know what matters to you and to make sure you’re not spending time and energy on bothersome symptoms that needlessly wear you down. Pain is a good example: terrible pain from cancer can be exhausting, consume a ton of energy and is worse for the body than any medications aiming to manage the pain. There is no need for a person fighting cancer to also try fighting pain.
There is now very clear evidence that people who receive specialized palliative care actually live longer than those who do not. This is why it’s so important to understand that palliative care is not about giving up — far from it. It’s about living the very best you can for as long as you do."
Hacking the #Hospital #Death. When you Can't #Die at #Home. @TheLizArmy #ACP
“Spoiler alert: we are all going to die
One thing I have noticed as an “empowered patient” is that most people don’t talk about death and dying. We might think about it, but we don’t plan in advance or communicate what we would want if we ever were put in a position where we could not speak for ourselves. I understand. It is an uncomfortable topic.
According to a 2012 report by the California Health Care Foundation, 82% of Californian’s think it is important to put your end of life wishes in writing, yet only 23% have done so. Why is this important?
For one thing, doctors are trained to save people, and without a medical order or an advance directive, a medical team will, by default, try to save your life by all methods possible…
As a relatively healthy 36-year-old, saving my life by all methods possible actually sounds like a good idea! But if I was dying, say from an advanced brain cancer, there is no amount of CPR in the world that is going to cure me of cancer…
The beginning of the end
…The medical team gave J medication to take away any pain he may experience. They removed his breathing tube, and unhooked all machines except for the one monitoring his heart beat. Quickly, his bed was moved to the sunny room where his friends, including myself, were waiting outside by the window.
As soon as the medical team cleared out we poured in. One person set up the speakers. Another friend was ready with the iPod. The door to the medical area was closed. The rest of us swarmed in around him: hands placed on his hands, his legs, his feet. The room was small, so some hovered around the perimeter and in the doorway to the open air…
We fell silent and the first song began…
A friend said “Orange Sky” held a lot of meaning for J. I had never heard this song, but now I will never forget it. I watched J’s heart rate decrease during the first two-thirds of the song, from the low 30s to zero. The monitor began to ding. A friend pushed a button, silencing the sounds. I held J’s feet.
We listened through the end of the song, with our faces on J’s, tears pouring out of our eyes. I was sobbing. We were devastated.
No one danced.
When the song ended there was silence.
Then the scene from a movie played out: A doctor wearing a white coat walked into the room. He donned a stethoscope and raised the end to J’s chest. His hand moved to various areas of our friend’s chest, and down and around to his stomach. He raised each of J’s eyelids to shine a flashlight into the pupils looking to see if they would constrict. The pupils did not move. The doctor looked at the clock and said, “It is 6:11. Take as long as you need.” He exited the room. End scene.
We all stood looking at J for a long time. Then the music began again… ‘We Could Be Heroes,’ by David Bowie.
The end
The best way to capture your healthcare preferences is by having a conversation with your loved ones, appointing a medical decision maker, and then documenting your preferences in an advance healthcare directive.”
When the #Patient Won’t Ever Get Better @danielalamasmd #hpm #ACP
“In the early moments of critical illness, the choices seem relatively simple, the stakes high – you live or you die. But the chronically critically ill inhabit a kind of in-between purgatory state, all uncertainty and lingering. How do we explain this to families just as they breathe a sigh of relief that their loved one hasn’t died? Should we use the words “chronic critical illness”? Would it change any decisions if we were to do so? Here, I find that I am often at a loss.
I was quiet on the other end of the phone line that night. Was my patient stable? For the moment, she was. But with each event like this one, and there would be more, my patient would move further from the hope of ever reclaiming that life she had had in the fall: living in her own home, watching movies, cooking. I felt that I could see the weeks and months spooling out, a moment of calm, a new emergency. But this wasn’t the time to tell her daughter, not on the phone, not tonight.
And so I told her the truth – one truth, at least. Her mother was critically ill, but stable for the night”.
@CanadianHPCAssn #National #Hospice #Palliative Care Week Busting the #Myths #hpm
National Hospice Palliative Care Week will run May 1-7, 2016 under the theme Hospice Palliative Care First and features an FAQ, Mythbusters, and includes information for health care professionals.
"There are many ways to start the conversation about end-of-life care in Canada. Spreading awareness and education is one of the best ways to advocate for change and ensure that every Canadian has access to quality hospice palliative care.
Visit the official Advance Care Planning website at www.advancecareplanning.ca for resources to share and distribute.
Learn about the integrated palliative approach to care developed by the Way Forward project at www.nationalframework.ca
Use the “Power of 10” materials developed by the Canadian Hospice Palliative Care Association to spread the word about hospice palliative care in your communities. These materials can be found here: www.chpca.net/week
Spread the materials developed for this year’s campaign “Hospice Palliative Care First” found here: www.chpca.net/hpcfirst "
My Gift of Grace. Helping everyone have better conversations about end of life.
"My Gift of Grace is a game that helps everyone have better conversations about end of life. These conversations are challenging, but we can rise to the challenge together, and to prove it, we hold public games in Philadelphia on the final Friday of every month.
The game can be played by families, co-workers, teams, strangers, or a mix of any of these. There are no age restrictions or experiences you need to have before you play. The game adjusts itself to the level of comfort of the players and to how long a group wishes to play.
Get the game at mygiftofgrace.com, or find out about our public engagement work at ourcommonpractice.com "
Letting #Patients Tell Their #Stories. @DhruvKhullar
“As we acquire new and more technical skills, we begin to devalue what we had before we started: understanding, empathy, imagination. We see patients dressed in hospital gowns and non-skid socks — not jeans and baseball caps — and train our eyes to see asymmetries, rashes and blood vessels, while un-training them to see insecurities, joys and frustrations. As big data, consensus statements and treatment algorithms pervade medicine, small gestures of kindness and spontaneity — the caregiving equivalents of holding open doors and pulling out chairs — fall by the wayside.
But all care is ultimately delivered at the level of an individual. And while we might learn more about a particular patient’s preferences or tolerance for risk while explaining the pros and cons of a specific procedure or test, a more robust, more holistic understanding requires a deeper appreciation of ‘Who is this person I’m speaking with?’
In Britain, a small but growing body of research has found that allowing patients to tell their life stories has benefits for both patients and caregivers. Research — focused mostly on older patients and other residents of long-term care facilities — suggests that providing a biographical account of one’s past can help patients gain insight into their current needs and priorities, and allow doctors to develop closer relationships with patients by more clearly seeing ‘the person behind the patient’.”
#Prepare for a good End of Life. #ACP #InformedChoice #EOL. Judy MacDonald Johnston
“Thinking about death is frightening, but planning ahead is practical and leaves more room for peace of mind in our final days. In a solemn, thoughtful talk, Judy MacDonald Johnston shares 5 practices for planning for a good end of life.”
How to tell everyone what kind of #music to play at your #funeral. #ACP
“For Andrew Smith, a six-day stay in hospital got him thinking about life and death.
Granted, he was only having a toe removed. But what would happen if he passed away? Did his family know what kind of music he would want played at his funeral, or whom he would want in attendance?
‘I thought, I really need to get this stuff written down. But then I decided there’s a lot of people in the same situation as me, so if I can create a website where people can do it at home, at their own pace, that would be awesome,’ says the 44-year-old from Halifax who now lives in Vancouver.
The result of his thinking was Final Wish, a secure website that stores information that people would want shared at their time of passing. That includes what should be done with social media accounts and who should look after pets. Upon death, that information can be accessed by preappointed confidants.”
Why we need better #end-of-life #policies in #seniors’ residences. #LTC
“How we die is regularly in the headlines as we await government legislation to be tabled in response to the 2015 Supreme Court of Canada decision legalizing physician-assisted dying. Palliative care gets less attention, but it is what most of us will want at the end of life: drugs to relieve agitation, pain, agonal breathing and other symptoms. Nurses can provide soothing medications, but only after doctors have issued prescriptions, often with increasing dosages. But as the Crosbie family discovered, doctors are few and far between in long-term care facilities, especially on weekends. Their experience is a cautionary tale.”
Are #Families Ready For The #Death And #Dying #Conversation? #ACP #InformedChoice
"The Institute of Medicine (IOM) believes the time is right for a national dialogue to normalize the emotions on death and dying. They think that the social trends point toward a growing willingness to share stories about the end-of-life care and that it will help drive more family discussions. In the IOM consensus report, Dying in America, experts found that accessibility of medical and social services could improve a patient’s life at the end. But if people don’t discuss which medical care or social services they want or not, how will their wishes be known and carried out?"
#Dying Better, Even If It Means Sooner. Delaying #death with excessive, expensive end-of-life care often does more harm than good.
"Looking back, many sons and daughters I have worked with regret having encouraged a parent to undergo a hip surgery. Spouses regret pushing for their loved ones to be intubated, and many patients struggle to balance the suffering with the life-prolonging effects of their treatments. Such regrets are the outgrowth of an approach to death that is focused on delaying death rather than being present and accompanying loved ones as they are dying. Accessing death-delaying treatments often comes at the expense of easing discomfort and being intentional about the nonmedical ways we can help our dying loved ones".
Why #Death Is Good Dinner #Conversation. #ACP @deathoverdinner @convoproject
"As I write this, I’m five years post-diagnosis and officially in “survivorship” care – I now go in for follow-up only once a year. And I have to admit, with cancer further and further in the rearview mirror, it’s easy to get back into denial mode when it comes to death – “I’m going to live forever!”
But we need to acknowledge death, talk about it, whether we’re a terminal patient, a just-diagnosed Stage I patient, or someone entering “survivorship.”
Recently, there have been the beginnings of a movement to help us all get real and have “the talk” about death.
So let’s get talking. Even if it’s scary and awkward, having this talk will greatly increase the chances that your end-of-life wishes are honored.
Death Over Dinner and The Conversation Project are organizing a week-long National Dinner Party to Dine and Discuss Death April 16 through 22".
When Cancer Treatment Offers Hope More Than Cure
"I turned back to my patient, still holding her hand. 'How about we take a little break from the treatment?'
She nodded, and we sat in silence again. After a while, she asked 'When we gonna get started on chemo again?'
I looked uncertainly at her and then at Mr. Boo. He looked back at me, awaiting my reply. This time, I rearranged myself to sit up a little straighter in my chair.
'Well, I have to wonder if giving you more chemotherapy is the right thing to do, with all that you’ve been through. I’m wondering if we should be talking about bringing more care into your home, to assist both you and Mr. Boo. Maybe even hospice.'
I had said the word."
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)".
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".
Quality of #Death. My Journey with Stage 4 Breast #Cancer.
"We shouldn’t be afraid to talk about what a good quality of death is while balancing a good quality of life. I believe a good quality of life relates more to the application of medical intervention or lack of medical intervention. For me, a good quality of death relates to the amount of grace and love that surrounds me. I am hopeful, it will fuel empowerment and strength as I face my death. I want to find grace and love in myself and the people sharing this journey with me".