How to Die Well

"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

The diagnosis of a serious Illness. Important considerations to discuss with the Healthcare Team

Starting a Conversation with Your Healthcare Team

Whether you or a loved one have been newly diagnosed with a serious illness, or have been told your disease has progressed, you will have to make decisions about treatment. You may have many thoughts and emotions at this time. This can be a time of uncertainty and it is common to feel worried. It can be helpful to ask your healthcare team questions about what to expect, how to plan and what support and resources are available to you and your family. 

It can be helpful to ask your healthcare team questions about your illness so that you can best understand your treatment options. The following is a list of questions that may help you to make informed decisions about your plan of care. Please ask these questions if they are helpful in guiding you and your family, or ask whatever questions are important to you. It can be helpful to bring your list of questions to your medical appointment and record/write down the answers. If you have the support available, you can have someone accompany you to your appointments to listen and help record the details. 

Some questions you may ask your Healthcare Team: 

• Is the condition short or long-term? Reversible or irreversible? 

• Is the Illness curable or incurable?

• What types of treatment are available to treat the illness/condition? 

• Where is this treatment offered? Hospital? Clinic? Home? 

• What is the goal of treatment (cure, manage pain/symptoms, improve function, extend life)? 

• If the goal of treatment is to extend-life, how long does the average person live while receiving this treatment? What about those who do not receive this treatment? 

• How often is this treatment successful? 

• Does having this illness/condition impact the effectiveness of treatments/
interventions one might receive in an Intensive Care Unit? 

• What are the common risks and side effects of this treatment? Are there any possible dangers connected to this treatment? 

• Where and how often will I receive this treatment? How long do you expect this treatment to continue? 

• Is there a financial cost associated with this treatment? 

• When and how will you know if these treatments are working? 

• When or why might these treatments stop? If this treatment stops, what are other treatment options? 

• How will this treatment impact my life? What are the expected physical, emotional, psychological and practical issues? 

• What type of additional support is available to me? What about my family? 

• What are the physical, emotional, psychological and practical resources that
can help? How do I/my family access them?

It is important to take time to have conversations about your treatment with your healthcare team. Please ask questions that are important to you. Honest and open communication about your healthcare is so essential. 

How the United States Is Changing End of Life Care @attn

“As people live longer and medicine becomes more advanced, doctors have more ability than ever to hold off death. Yet many people put virtually no thought into whether they actually want their lives extended past a certain point — leading to a raft of unnecessary, unhelpful, and possibly unwanted medical procedures shortly before a person's death.”

Having tough end-of-life conversations — before it's too late

“ ‘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.”

When Patients Leave ‘Against Medical Advice’

"As physicians, we must explore our patients’ reasons for wanting to be discharged and have open and truthful conversations with them. We assume that keeping them in the hospital is always better for their health. But health encompasses the physical, mental and psychological.

In the end, my patient’s leaving was not about our therapeutic alliance. It was not about me at all. It was about her, the patient, as it should be."

LETTING GO: What should medicine do when it can’t save your life?

“People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.”

Looking Death in the Face

"We tend to defer the question of living or dying well until it’s too late to answer. This might be the scariest thing about death: coming to die only to discover, in Thoreau’s words, that we haven’t lived."

Why Talking About Death Is the Key to the Longevity Revolution

"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

Why is it so hard to talk about dying? @whenyoudieorg #hpm

"When heading into the unknown unprepared, we humans are rarely at our most confident. And when it comes to death, we have plenty of reason to feel anxious. It’s times like these that we need to hear from those who’ve gone before us. And that’s what our latest WYD In Focus provides: candid accounts from family members and caregivers who’ve been present at the deaths of loved ones—because understanding what happens at the bedside might surprise you."

Source: When You Die

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

How might we reimagine the end-of-life experience for ourselves and our loved ones? @OpenIDEO #hpm

“ ‘...I am asking that we make space – physical, psychic room, to allow life to play itself all the way out – so that rather than just getting out of the way, aging and dying can become a process of crescendo through to the end.’ ~ BJ Miller

Each of our lives is a story. As we plan for its final chapter, we have the opportunity to incorporate our passions, relationships, and spirituality to make dying better. How might we make this process more human-centered so we can live fully until the very end? Let’s re-imagine how we prepare for, share and live through the final chapter of our story.”

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 "

#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".