Communication

Talking About Death Won't Kill You: The 100% Certainty Project

"Most of us are ill-prepared to face what lies ahead. In a death-denying society, how do we ready ourselves for our human fate? How do we prepare for the end of our lives?

To this end, The 100% Certainty Project uses books to spark dialogue amongst citizens with the hope that grassroots efforts begin to build the social fabric we all will need at end-of-life. The project attempts to de-medicalize the experience of death & dying and engage community agencies and activists. We encourage the public to read and talk about books – books with themes of death, dying, bereavement, and loss. By facilitating conversation at dining room tables, in coffee shops and on street corners across Greater Hamilton and beyond, this reading initiative aims to increase public awareness about death & dying and lessen society’s discomfort facing death." Source: The 100% Certainty Project

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Please join us for the first in a series of FREE public events. As part of the Division of Palliative Care at McMaster University with McMaster Faculty of Health Sciences, and our "The 100% Certainty Project. Death: Something to Talk About" initiative, together with Heart House Hospice, am honoured to co-host and moderate this event at the Mississauga Library with my brilliant friend and colleague Dr. Kathy Kortes-Miller. While the event is free, registration is required via the Mississauga Public Library at (905) 615 4835.

In support of National Hospice Palliative Care Week, we'll hear about her experiences as a parent and spouse facing a cancer diagnosis, as a Social Worker in Palliative Care and as an academic researcher and educator. At this event, Kathy will share her insight and explore some of the big questions about living and dying. We'll also open up the conversation to the audience - questions are welcome. Please email questions in advance to our "100% Certainty" email address: talkaboutdeath100@gmail.com or, join us and ask Dr. Kortes-Miller directly. Her book "Talking About Death Won't Kill You. The Essential Guide to End-of-Life Conversations" will also be on sale at each event.

Please join us for this FREE public event. As part of the Division of Palliative Care with  McMaster Faculty of Health Sciences , and our "The 100% Certainty Project. Death: Something to Talk About", am honoured to co-host and moderate this event at the  Hamilton Public Library  with my brilliant friend and colleague Dr. Kathy Kortes-Miller. While the event is free, registration is required via  Eventbrite

Please join us for this FREE public event. As part of the Division of Palliative Care with McMaster Faculty of Health Sciences, and our "The 100% Certainty Project. Death: Something to Talk About", am honoured to co-host and moderate this event at the Hamilton Public Library with my brilliant friend and colleague Dr. Kathy Kortes-Miller. While the event is free, registration is required via Eventbrite

Please join us for this final evening in our series of FREE public events. As part of the Division of Palliative Care at  McMaster Faculty of Health Sciences , and our "The 100% Certainty Project. Death: Something to Talk About", together with  Carpenter Hospice , am honoured to co-host and moderate this event at the  Burlington Public Library  with my brilliant friend and colleague Dr. Kathy Kortes-Miller. While the event is free, registration is required via the Burlington Public Library at (905) 639 3611.

Please join us for this final evening in our series of FREE public events. As part of the Division of Palliative Care at McMaster Faculty of Health Sciences, and our "The 100% Certainty Project. Death: Something to Talk About", together with Carpenter Hospice, am honoured to co-host and moderate this event at the Burlington Public Library with my brilliant friend and colleague Dr. Kathy Kortes-Miller. While the event is free, registration is required via the Burlington Public Library at (905) 639 3611.

EXPLORING GRIEF AND LOSS LITERACY: SUPPORTING AND EMPOWERING SCHOOL COMMUNITIES

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Am thrilled to be offering a full-day of training on Feb. 1st for the Halton District School Board on “EXPLORING GRIEF AND LOSS LITERACY: SUPPORTING AND EMPOWERING SCHOOL COMMUNITIES”

Will be honoured to be present with so many professionals as we spend the day exploring: 

- Grief and Loss Literacy (related to dying, death and non-death losses)

- Stigma Related to Illness, Dying, Grief

- The Dialogue of Loss

- Support Across School Communities

- Promoting Capacity & Engagement

- Opportunities for Self-Care

Looking forward to sharing some brilliant resources!

Communication and Connection for Families Coping with Cancer

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I am honoured to have been a guest on this week’s VoiceAmerica - Live Internet Talk Radio Breast Friends Cancer Support Radio Network. Becky Olson and Sharon Henifin of Breast Friends of Oregon, both breast cancer survivors and thrivers have asked me to be their guest to discuss "Communication and Connection for Families Coping with Cancer", demystifying Palliative Care and highlighting the need to support individuals and families of all ages, from time of diagnosis through to bereavement. At the conclusion of our episode, I highlighted the National Hospice and Palliative Care Organization and Canadian Hospice Palliative Care Association as sources of information for people wanting to learn more about Palliative Care in the U.S. and Canada.

Breast Friends is a nonprofit organization started by Sharon and Becky so that no woman would feel alone on her journey and to provide needed resources to those facing the challenge of breast cancer, as well as to their families and friends. Please visit their website for more information: www.BreastFriends.org.

This episode aired live and is now archived at https://www.voiceamerica.com/episode/106520/communication-and-connection-for-families-coping-with-cancer

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Unfinished Business in Families of Terminally Ill with Cancer Patients

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" Families with unfinished business had significantly higher depression and grief scores after bereavement compared with those without."

Source: Unfinished Business in Families of Terminally Ill with Cancer Patients

YES, I WRITE ABOUT DEATH: ON THE WAYS PEOPLE RESPOND TO A “DEATH JOB” AND HOW I HANDLE IT

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"I tell them that it’s never my goal to glamorize death or tell people how they should or shouldn’t feel about death. I only hope my writing gives people permission to broach the topic."

Source: YES, I WRITE ABOUT DEATH: ON THE WAYS PEOPLE RESPOND TO A “DEATH JOB” AND HOW I HANDLE IT

 

10 Things My Chronic Illness Taught My Children

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"All three of us work to maintain balance — knowing when we need to flex and when we need to release, when to put pain first and when to let it fade into the moment."

Source: 10 Things My Chronic Illness Taught My Children

Patients feel psycho-social impact of chemo more acutely than physical side effects

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Highlighting the need for integrated Person and Family-Centred Care...

"The results show that there might be a gap between what doctors think is important or disturbing for patients, and what patients really think. Physical, psychological, social and spiritual support is needed at every stage of the disease" 

Source: Patients feel psycho-social impact of chemo more acutely than physical side effects. MedicalXpress

Grief In The Classroom: 'Saying Nothing Says A Lot'

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" 'Virtually all children will go through it — but that doesn't mean it's a normalizing experience,' says Dr. David Schonfeld, an expert on student grief and a driving force behind the new website. 'Even though it's common, it warrants our attention.' "

Source: Grief In The Classroom: 'Saying Nothing Says A Lot'

Practising compassion in an uncompassionate health system. Hearts in Healthcare

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"Yet, amidst the storm, some remarkable health professionals create a circle of calm. They go about their work in an unhurried way, finding time to greet their patients, put them at ease, listening deeply and offering kindness and compassion. They don’t neglect their clinical tasks, indeed they seem to get the work done with quiet efficiency. These inspiring workers go home with satisfaction and joy in their hearts. How is that possible?"

Source: Hearts in Healthcare Practising compassion in an uncompassionate health system 

Camp Erin: Where Children and Teens Learn to Grieve and Heal

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Am honoured to volunteer with Camp Erin. It is indeed a remarkable community and one that nurtures capacity in children and youth to grieve the death of a loved one.

"Children and teens ages 6-17 attend a transformational weekend camp that combines traditional, fun camp activities with grief education and emotional support, free of charge for all families. Led by grief professionals and trained volunteers, Camp Erin provides a unique opportunity for youth to increase levels of hope, enhance self-esteem, and especially to learn that they are not alone.

Camp Erin is offered in every Major League Baseball city as well as additional locations across the U.S. and Canada. The Moyer Foundation partners with hospices and bereavement organizations to bring hope and healing to thousands of grieving children and teens each year.

Camp Erin allows youth to:

  • Tell their story in a safe environment
  • Process grief in healthy ways
  • Meet friends facing similar circumstances
  • Learn they are not alone
  • Build a tool-box of coping skills
  • Honor and memorialize loved ones
  • Have fun!"

Source: Camp Erin. The Moyer Foundation 

For information on Camp Erin locations in Ontario, please visit: Camp Erin Hamilton; Camp Erin Toronto; Camp Erin Eastern Ontario; Camp Erin Montreal

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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. 

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

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.”