"To start to find a way to experience a better end, we need to reflect on our own deaths and begin the process of accepting our mortality. This may happen through meditation, writing or conversations. Of course we should have hope if illness strikes us, but hope for perpetual life is blind. As we age or grow ill, the goal may switch from hope for longer life to hope for more attainable goals like healing relationships, living pain-free and enjoying a glass of Cabernet.
Simultaneously, we must prepare for this final stage of life. We must consider our preferences and values and shared them with our loved ones. Stephanie cared about being at home, with her family. What is most important to you? What would be most important to your loved ones? One day you might be called on to represent them. This conversation should happen repeatedly over the years, through the various stages of life and changes in health.
We must all — doctor, nurse, patient and family — also remember that these decisions require the collaboration of a whole team. The doctor is indeed the expert on the disease, but the patient is the expert on the patient. If you feel that you are not being included in decision-making for yourself or a loved one, or you don’t feel the team is communicating well, request a palliative care consultation, which brings communication expertise into the picture."
Read the full article at Time
“ ‘Because by that time the patient is too sick to be able to have a voice in their own care, their family members have never had this discussion with the patient because no one guided them,’ said Periyakoil. ‘So as a result, they're sort of making these very high stakes decisions in the dark. They, because they love the patient so much, are caught up in the deep, emotional trauma and it's very hard for them to be able to make decisions.’
If family members can’t speak on behalf of the patient, Periyakoil says aggressive, heroic measures will generally be used to prolong the patient’s life.
‘The system default is to do everything possible, every treatment possible, even though the treatment might be ineffective and the treatment may be something the patient doesn't want,’ said Periyakoil.”
"Now, in the midst of a longevity revolution with a passion to create new rituals and connections that help a community to, yes, thrive, we are recognizing that dying is also a profound and shared human experience. Its time to talk about it."
Why Talking About Death Is the Key to the Longevity Revolution by Ellen Goodman
Please join us as we host this free event. For many people, talking about end-of-life is uncomfortable or even taboo. But sooner or later, we all die. This is an upbeat, interactive session that provides evidence-based tools regarding advance care planning, hospice, palliative and end-of-life care. Let's talk. Do you have an End Game?
For more information or to register, please visit Eventbritehttps://www.eventbrite.ca/e/the-end-game-conversations-about-life-and-death-tickets-27665945588?aff=efbevent
"The realities of death are not easy to confront. That much is clear in the trailer Netflix just released for “Extremis,” an original documentary short exploring the harrowing decisions families must make for their loved ones in urgent end-of-life cases relying on machine-based life support.
'We’re all gonna die…and it’s good to have a little bit of a say in how,' says Dr. Jessica Nutik Zitter, the palliative care physician featured in “Extremis,” as we see images of families, doctors and patients in the midst of facing death daily.
The trailer depicts the access granted to Oscar- and Emmy-winning filmmaker Dan Krauss (“The Kill Team”) into the ICU unit of an Oakland, California public hospital. Krauss attempts to intimately examine “the intersection of science, faith and humanity” by observing personal, real-time accounts of how complicated and emotionally wrought the dying process becomes when there are opportunities for choice in death.
The 24-minute film premiered at Tribeca Film Festival in April and the San Francisco International Film Festival on Saturday. “Extremis” is set to release globally on Netflix on September 13."
Source: IndieWire. September 6, 2016
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
“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 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.”
“The Taylors hated the stealth that encased the disease, how it was treated like an unmentionable cousin. They wanted no part of that. Ms. Taylor decided that she would not show herself as some spackled-over person. “It was my decision to let the disease be alive in my life,” she said. “You don’t have to just throw in the towel.”
She didn’t know the order of whom she would tell, nor how to phrase something so shackled with frightful connotations. Your life becomes a script. Alzheimer’s, she knew, leaves its heavy imprint on everyone…
Just recently, Ms. Taylor had discovered the website To Whom I May Concern, the creation of Maureen Matthews, a psychiatric nurse. It arranges for people in the early stage of dementia to act out plays telling what it is like for them. Ms. Taylor clicked on some videos, at once felt the common spirit. The person saying, ‘People take that diagnosis and assume that you are now officially irrelevant.’ And: ‘It’s not that we want people to treat us as if we have Alzheimer’s. But at the same time we want people to recognize that we have it. Confusing, right? Welcome to our world.’ And: ‘The end stage is our future. But not today’.”
“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”.
"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.
“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.”
“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.”
"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?"
"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".
"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".
“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.”
"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".
“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.
"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".