Source: Speak Up Ontario
Informed Patient? Don’t Bet On It
"We’ve seen too many patients regret decisions that they made without fully understanding their options, or the possible outcome. We encourage our patients, and our colleagues, to be partners in what are often life-changing decisions about health care."
Read the full article The New York Times
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
5 ways to improve care at the end of life
"All of us face the difficult prospect of a parent or loved one suffering from an illness that ultimately leads to death. When that time comes, we will want to ease their physical and emotional pain, respect their wishes, and allow them to die with dignity — the same things we will want for ourselves.
The way that Americans die has changed but, unfortunately, our medical system hasn’t kept up. It was designed at a time when death was often sudden or declines in health were relatively rapid. These days it is much more common for people to live longer with multiple chronic conditions, and we have the technology to prolong life as death approaches. End-of-life care is fragmented, intensive, and costly — and patients’ wishes are often lost due to poor communication."
Read the complete article at: STAT
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 to Speak to Someone About an Unspeakable Loss
"Today, as I recall the loss of my own infant son, I think about the one person who did truly comfort me. She arrived at my house with a bottle of fine brandy and said, “This is everyone’s worst nightmare. I am so, so sorry this has happened.”
Then we sat on the lawn and she poured me a drink as she listened to every horrible detail.
As I look back now, I still feel how much her gesture helped me cope through those early days of pain. She didn’t try to fix me or try to make sense of what happened. She didn’t even try to comfort me. The comfort she gave came through her being in it with me.
You can’t fix what happened, but you can sit with someone, side by side, so they don’t feel quite so alone. That requires only intention, a willingness to feel awkward, and an open, listening heart. It’s the one gift that can make a difference."
Death Café Burlington
In Celebration of National Advance Care Planning Day, Death Café Burlington will be held on April 12th, 2017 from 7-9pm at Saving Thyme.
Death Café is an international movement where people, often strangers, gather to eat cake, drink tea and discuss death. The objective is 'to increase awareness of death with a view to helping people make the most of their (finite) lives’.
At Death Cafe, you can expect a group directed discussion of death with no agenda, objectives or themes. It is a discussion group rather than grief support or a counselling session. It is a respectful, public event where people of all communities and belief systems are welcome to have discussions about death. Interesting conversation is guaranteed!
To register for this free event in support of the Compassionate City Charter, please visit Death Café Burlington
For more information about Death Café, please visit http://deathcafe.com/
The Conversation Placebo
"What’s often overlooked is that the simple conversation between doctor and patient can be as potent an analgesic as many treatments we prescribe."
A Therapeutic Intervention Facilitating Connection in the Context of Life-Limiting Illness
This video provides a brief overview of an expressive arts project that I complete with families of all ages, following the diagnosis of a life-limiting illness, through to end-of-life and into bereavement. Presented at the 13th Annual Innovations in Palliative Care – Leadership, Courage & Community. McMaster University. Department of Family Medicine. Division of Palliative Care. Faculty of Health Sciences (November 2016). This project serves as a therapeutic intervention facilitating communication and honouring connections in the context of life-limiting illness and can be completed by anyone, anywhere at any time.
It’s a profoundly intimate experience when we are allowed to care for someone… that compassionate connection can transcend so many barriers, and can sometimes even transcend suffering. That connection can be extraordinary.
We all have a role to play in helping to honour someone’s legacy. I believe as Health Care Professionals, like those we care for - we can be courageous in the face of illness, and vulnerability and uncertainty…
We can step out from behind the protection of our roles and in doing so, provide invaluable opportunities for families to connect, and collectively process experiences from time of diagnosis through to end-of-life and into bereavement.
Source: You Tube. A Therapeutic Intervention Facilitating Connection in the Context of Life-Limiting Illness
On Talking About the Hard Things of Life @racheltoalson
“We are taught to believe that strength and perseverance and hope do not include brokenness. But that’s simply not true. Our brokenness, our sadness—they are the precursors to becoming strong and mighty. We step into our cracks and we kneel down and we pour our attention on them, and that is what becomes the superglue that puts us back together.
We do this alone and we do it together.
When we turn away and hide our sadness or our mess or the hard places in our lives, apologizing that we can’t get it together, what we’re doing is denying others the opportunity to step into our cracks with us. To come alongside us and say, Hey, you’re not alone. To take our broken pieces and and glue them back into place.
The opposite of turning away is turning toward. I know that sounds obvious. But what exactly is turning toward in a situation like this one?
It’s acknowledging our sadness, however deep it goes. It’s talking about our sorrow, however founded or unfounded it may be. It’s sharing our pain, our sickness, our burdens with one another and healing together—whether that together is with friends, family or people you just met who share your own pain or sickness or the kind of burdens you carry.
Maybe some won’t always take our brokenness the right way. Maybe sometimes they’ll call us names or shame us or make us feel like we’ve done the exact thing we should never have done. But the only way to survive the hard places is to open them to the light. The only way back to strength is to acknowledge how this thing has weakened us. The only way out is through the cracks.”
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.”
What people talk about before they die
“I visit people who are dying -- in their homes, in hospitals, in nursing homes. And if you were to ask me the same question -- What do people who are sick and dying talk about with the chaplain? -- I, without hesitation or uncertainty, would give you the same answer. Mostly, they talk about their families: about their mothers and fathers, their sons and daughters.
They talk about the love they felt, and the love they gave. Often they talk about love they did not receive, or the love they did not know how to offer, the love they withheld, or maybe never felt for the ones they should have loved unconditionally.”
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
What it Really Means to Hold Space for Someone #Grief
"It means that we are willing to walk alongside another person in whatever journey they’re on without judging them, making them feel inadequate, trying to fix them, or trying to impact the outcome. When we hold space for other people, we open our hearts, offer unconditional support, and let go of judgement and control."
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
Celebrating Connections: A Creative Legacy Project #hpm
Grateful for hosting and to all in attendance honouring connections.
Legacy Art Workshop Art Gallery of Burlington for the launch of the Compassionate City Charter - Burlington via @snapdBurlington
Celebrating Connections: A Creative Legacy Project. A Free Public Event. Oct. 6th 2016
I am hosting a free event dedicated to making Hugs. "The physical embrace of a Hug is comforting for anyone in a time of need. In this instance, it is a creative legacy project that can be completed by anyone, anywhere at any time and is then exchanged as a lasting memento". This is a family event and appropriate for children of all ages. Please join me.
For more information or to register please visit Eventbrite https://www.eventbrite.ca/e/celebrating-connections-a-creative-legacy-project-registration-27657060011