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."

What Complicated Grief Is Like

"...Today, I can say that, of course, my life was permanently changed by losing Eric, but I know it is possible to make a new life that is rich and satisfying — though often tinged with sadness.

Now I find myself going and doing and functioning, and taking joy in life and its challenges. I never believed that would be possible, but I assure you it is. There are still times, especially good times, when the pain of missing Eric stops me in my tracks. But there are good times.

I believe I have grown in my ability to be compassionate and to understand the pain that others may be experiencing. Once you know the pain of excruciating, incomprehensible loss, you can’t un-know it. But when you endure struggle, you can also learn empathy.

I am sharing this because until I was diagnosed and treated with complicated grief — which I had never even heard of before and which 7 percent of bereaved people struggle with — I felt isolated and like my life had no meaning. I hope my story will reach anyone who’s feeling like that and show them there is hope. I even appeared on CBS to spread the word about complicated grief and help others who may be struggling. The Center for Complicated Grief has a website and can be found here."

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/ 

Who Will Care for the Caregivers?

"If it’s a certainty that all of us will experience illness, it’s a near-certainty that most of us will care for someone with an illness. But our current conception of patient and disease seems too narrow. It may help to recognize that while patients’ needs come first, illness is often a family affair.

For many, caring for a loved one provides tremendous purpose and fulfillment. It can deepen relationships and offer the time and space for connection where it otherwise might not exist. It seems that the goal, then, should not be to reduce family caregiving, but to reduce its burdens".

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

Elizabeth Dougherty - 13th Annual Innovations in Palliative Care

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.”

Treating troubled family dynamics reduces complicated grief

“Professor David Kissane, who heads the department of psychiatry at Monash University in Melbourne, has developed a family-focussed model of grief therapy to prevent complicated bereavement. A trial published in the Journal of Clinical Oncology earlier this year found the therapy reduced the severity of complicated grief in high-risk families and the development of prolonged grief disorder.

Professor Kissane says bereavement therapy for families is more effective than therapy for individuals when grief is being perpetuated by dysfunctional family relationships. He says the most common family configuration he sees is parents and their children, but for some families it includes a neighbour, grandparents or aunts and uncles.

‘Family centred care is based on the idea that families that grieve together stay together and they heal their grief very well,’ he tells Palliative Matters.”

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."

Why Your Life Is Not A Journey

"If we thought of life by analogy with a journey, a pilgrimage, which had a serious purpose at the end, and the thing was to get to that end, success or whatever it is, maybe heaven after you’re dead. But we missed the point the whole way along. It was a musical thing and you were supposed to sing or to dance while the music was being played."

Source: Alan Watts & David Lindberg. Why Your Life Is Not A Journey

64 New Year’s Resolutions for Grievers

“One of my favorites was a beautiful comment from Jeannette Brown, a Buddhist, who explained that “rather than make resolutions for grief, every morning and every evening we pray (by chanting, our form of prayer) for the happiness or repose of all of the deceased. We believe that if we continue our growth and pursuit of happiness, our deceased family and friends will continue to become happy as well”.   I love that sentiment so much, but as someone who just barely manages to commit to a shower every day, resolutions admittedly help keep me on track.

Whatever is right for you, grief resolution or no grief resolution, we hope you find the list of ideas… helpful in thinking about how you will grieve in the new year.”

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."

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

Grief: Special Days and Holidays. @VictoriaHospice

"After someone dies, you may find that your grief surfaces again and again. Often this seems to happen ‘out of the blue’ and it may feel like an unwelcome intrusion. You may have been enjoying yourself one moment and then be in tears the next. You may also notice that certain days, holidays or public events are more likely or return..."

~Grief: Special Days and Holidays