Just as children’s understanding of death indicates intellectual developmental stages, an adult’s understanding of death is also something which grows and matures over time, influenced by life experience. Understanding and awareness occurs not in a gradual progressive fashion, but in leaps and bounds. I think we see this all the time in caring for people from all backgrounds and walks of life. Some people seem to get their heads around the possibility of dying very quickly and completely, but others “Rage, rage against the dying of the light” (Dylan Thomas).
Flashes of insight can strike at the oddest moments, even in those who are very reluctant to acknowledge that they may die soon, and it is important to gently capitalize on them. They may not happen when having a conversation with a family doctor, dialysis technician, hospice volunteer, or oncologist, or anyone who is comfortable rising to the challenge of having the conversation. There may however be a limited window of opportunity to talk about some of the important things that need to be discussed, especially if the person’s health is deteriorating fast, or if a big decision needs to be made about a possible intervention. It’s all very well expecting every person to be able to have a serious illness conversation about goals of care and advance care planning at any point, but in reality some people are just so terrified of dying that they are unable to have these conversations until very late in the course of illness. It then leaves them with a lot of ground to cover in a very short time. Any tools that health care providers and families can use to help introduce the conversation earlier or to seize the moment of insight and opportunity are very useful.
The Serious Illness Conversation Guide is designed for health professionals to guide conversations, but these conversations can be very difficult to start for patients who aren’t anywhere close to accepting their mortality. They can instead be ready to talk about living, albeit with a serious illness, as a kind of foot in the door for the harder conversation that can come later. Starting with a resource that has a positive but yet realistic approach can help people make those quantum leaps forward in understanding of what is going on in their lives. The book “”Lap of Honour: a no-fear guide to living well with dying” aims to provide that practical resource. Yes; it has the D-word in the sub-title; but living under trying circumstances is its focus.
“Lap of Honour” is a small-ish (200 page) paperback book that has 16 short chapters, each designed to help the reader tackle the kinds of challenges that they might face, right from the point of diagnosis of a serious illness, including one from which they might recover. It has lots of illustrations, large font for easy reading, and bullet points in the text to draw attention to the key messages of each chapter. It’s full of personal stories so it’s relatable, warm and reassuring, and quite a lot of humour.
It starts with a discussion about prognostication, and how bad we are at it, explaining what a lot of the technical medical terms mean. The next chapter tackles fear of dying head-on, with practical strategies to deal with it. The key message is that: “Just as we go to ante-natal classes when expecting a baby, preparing to die needs work and planning if it is to be done well. Once this work is done you can relax and enjoy the rest of your life, however long it may be. Chapter 3 is all about how to break bad news to friends and family, including children, and Chapter 4 is all about travel: the top of most people’s bucket list. Details make all the difference when planning the trip of a lifetime, especially if you have to plan dialysis 3 days a week, door-to-door wheelchair access, or a 24/7 oxygen supply. The practical advice we offer is all tried and tested, illustrated with examples from our patients who have made it work.
Some patients may want to stop here for a while, as the next chapter is about “Putting You in Charge”: advance care planning and substitute decision-makers. Knowing it is there, in their own homes, ready to be read even if it’s 4 in the morning, can allow the seizing of a precious opportunity to take that next quantum leap. It is followed by a very practical chapter on the difference between hospital and hospice care, and where hospice care can be received, including at home. It then follows with an outlining of what’s needed in order to be able to stay at home right to the end, if that’s possible, but emphasizes that dying an expected death at home is neither possible for everyone, nor desired by everyone, and there are good alternatives which are clearly described.
There are many books for carers, making recommendations on how to care for a sick loved one, but we have never fund anything in the literature to help patients look after their carers, so this is a very important chapter. An emphasis on the benefits of being allowed to care for someone are emphasized, and the idea of the “burden” of caring for someone you love can actually be a deeply meaningful experience; a privilege to be given.
Two short chapters then address financial issues and nutrition and complementary/alternative remedies, including a brief summary of the current state of knowledge about use of medical cannabis for symptom management. Chapter 12 is all about anticipatory memorials/funerals, also known as “living wakes”. Chapters 13 and 14 really get to the topic of dying, being on near-death experiences and what happens to bodies, then the last-but-one chapter explains the meaning of terms used in medically assisted death, so that any exploration of this can at least be done with a clear understanding of what the words mean. Finally, some additional resources are described, including instructions on how to use the RecordMeNow app which helps readers tackle Gaby’s simple and free legacy video-making process, and there are some handy pull-out charts and plenty of space for notes.
Feedback from readers has been overwhelmingly positive, and the book is best-introduced before someone gets sick, but better late than never.
“Lap of Honour: a no fear guide to living well with dying” by Gaby Eirew and Dr. Pippa Hawley is available from Amazon, and can be ordered through most good bookstores. For more information see the website lapofhonourbook.com.
“I read, at first with trepidation – after all, who wants to confront their own mortality? By the closing chapters, I read with a sense of something approaching peace knowing that a shared language, a common understanding and a sensible plan regarding death would see us all through.”
In February, Sea to Sky Hospice Society became the latest charity to shape an endowment fund with Whistler Community Foundation (WCF) as a long-term investment in compassionate care for Sea to Sky residents living with life limiting illness or grief.
With an initial investment of $10,000, Sea to Sky Hospice Society looks to grow the endowment and use the annual proceeds of the investment to support programs offered throughout the Sea to Sky corridor. Programming has been fine-tuned over the years by board, staff and more than 60 volunteer members who realized a dream to provide a dedicated space for hospice care with the addition of The Whistler Blackcomb Foundation Sea to Sky Community Hospice.
“Although we are a familiar presence in Squamish, we want all Sea to Sky residents to know that we are there for them and their loved ones as they navigate the end-of-life journey. Now more than ever there is a need to provide a safe and accessible layer of support to those in need. The Whistler Community Foundation has a deep understanding of community issues and we are excited to build opportunities together” said Jennifer Dunkin, Board Chair, Sea to Sky Hospice Society.
After meeting with the WCF team to learn more about community foundations, the Sea to Sky Hospice Society Board of Directors recognized the benefits of pooling their investments with other charities, like Whistler Adaptive and Whistler Search & Rescue. The partnership also offers the potential to expand awareness of the hospice society throughout the northern part of the corridor.
Donors and fund holders at community foundations across Canada take the long view by supporting local charities through the creation of endowment funds. Funds, such as the Sea to Sky Hospice Society Fund, allow for continuous growth and giving and provide solutions that strengthen our community now and into the future.
“Agency [Endowment] funds are a financial planning tool that ensures an organization will be around in the future to carry out its mission. We are delighted to welcome Sea to Sky Hospice Society to the Community Foundation family” said Sue Lawther, WCF Chair.
People who wish to contribute cash or securities to the Sea to Sky Hospice Society Fund are welcome to use the Canada Helps digital platform by visiting whistlerfoundation.com/give or for offline arrangements, such as and securities, reach out to Claire Mozes at cmozes@whistlerfoundation.com
For more information, please contact:
Claire Mozes
Executive Director
Whistler Community Foundation
cmozes@whistlerfoundation.com
604-935-8080 (voicemail)
Or
Leslie de Bie
Director of Fundraising & Communication
Sea to Sky Hospice Society
604 892-0303
leslie.debie@seatoskyhospicesociety.ca
Established in 1986, Sea to Sky Hospice Society is a non-profit community service whose mission is promoting and providing compassionate care for all Sea to Sky residents with life limiting illness and ongoing support for their loved ones. Support is provided by a dedicated volunteer team at no cost to the individual.
Sea to Sky Hospice Society invites you to follow their programming at seatoskyhospicesociety.ca
The Whistler Community Foundation is the steward of money gifted to the community and provides grants in the areas of environment, arts & culture, social service and education.
Our vision is to be impactful in supporting the charities and organizations that address evolving community needs.
By:
Sea to Sky sons describe their parents’ deaths as ‘beautiful’ and ‘peaceful’ thanks to MAID
In Memoriam: Maureen Elizabeth McLellan. McLellen family photo
When Mike McLellan’s mother Maureen Elizabeth died on Sept. 26, he was lying beside her. Her other son was on FaceTime with them from California.
McLellan describes her death as “a beautiful journey,” because, unlike many deaths, this one was planned to be peaceful.
Maureen, 79, chose Medical Assistance in Dying (MAID).
“It was incredible. It was absolutely incredible,” McLellan told The Chief.
“My brother and I said that we loved her and kissed her and hugged her, and I was lying in bed with her. It was really, really special,” McLellan added.
“She was totally at peace. You could see her body wasn’t shaking anymore. She just seemed very, very calm and peaceful.”
The experience was sort of like a funeral, in reverse.
People she knew at Shannon Falls Retirement Residence came by to hug her and say good-bye, he said.
His mom made some phone calls to people she cared about, as well, saying she was “Leaving at 7 p.m.”
The day of her death was “very relaxing,” he said.
McLellan said his mom was a very active and involved mom and in her later years, before her diagnosis of Lewy Body Dementia, she continued to be active.
“She was an awesome, amazing mom,” he recalled.
In the last two years of her life, the tremors that accompanied her illness got really bad.
She also began to have trouble swallowing, which impacted her ability to eat, making her thin and weakened.
“Knowing her condition, she knew that there was no probable improvement or anything she looked forward to as, ‘I am going to get better,'” McLellan said. “That is what led to her research and looking into MAID.”
In June of 2016, the federal government passed legislation that allows eligible Canadian adults to request medical assistance in dying.
MAID is an option available to most patients who are facing the end of life or who have a life-limiting illness and are dealing with suffering that is not resolved using conventional palliative care measures, according to Dr. Brenda Millar, the medical lead for the Sea to Sky Corridor’s palliative care service.
“In our program, when a patient is referred to us, we invite a discussion about MAID if the patient has asked us to go over their end-of-life options,” Millar said.
For more on this option, people can also talk to their family doctor who can make a referral to the program.
Patients can also discuss this option with their home care nursing team.
More information is also available on the BC MAID website.
“Any one of these entry points will get you in contact with our team to help you navigate the enrollment process,” Millar said.
There are three parts to the MAID application process.
First, the patient must fill out a request form.
Once this form has been submitted a medical doctor or nurse practitioner will need to do an assessment to verify that the situation meets the requirements of the program and to go over other palliative options that may be available that the patient may not have considered or been offered. This can be done in person or via video link in keeping with COVID-19 precaution, Millar said.
A second assessment is then organized by the program to connect the patient with the person who will be the provider for this service. This person is either a medical doctor or a nurse practitioner who has received specialized training in how to deliver this service.
“They will spend time with you to assure that you fully understand the whole process and that this is truly what fits your needs,” Millar said.
“The important thing for patients to understand is that filling out their request and even finishing the whole application process does not oblige them to carry through with MAID. And that they are the sole person who dictates where and when this process might take place.”
The patient can have a doctor or nurse practitioner give the life-ending medicine by intravenous injection, or the medical professional can prescribe a medicine for the person to ingest without help. Either way, a doctor or nurse practitioner is present for the death, according to Vancouver Coastal Health.
In the Sea to Sky Corridor, the MAID provision can be offered in the patient’s home but some people prefer a different location.
“We have done provisions in our acute care hospital if that is where the patient is situated but our preference is to offer patients to move to the WBF Sea to Sky Hospice where we can provide a more peaceful home-like atmosphere.”
For Maureen, McLellan said she was in hospice for a bit, but wanted to die at home at Shannon Falls, which was her home for many years.
McLellan said he feels more people need to know this is an option for them.
In Memoriam: Tim Regan. – The Regan family
Whistlerite Tim Regan’s father, of the same name, accessed MIAD back in the first year it was legal.
He chose Dec. 12, 2017 as his last day.
He died at home in Toronto, surrounded by his family.
The younger Regan told The Chief his dad had known from the time he was 15 years old, delivering groceries in the 1950s that he didn’t want to die suffering.
One of his deliveries was to a house where First World War veterans went to die.
“Seeing men suffer had a profound impact on him,” Regan said. “From that moment forward, he never wanted to be that guy. It was very important for him that he had a say in how he died.”
The elder Regan was a very practical guy, his son recalled, who understood well the cycle of life and was at peace with it.
He also had a condition called hemochromatosis, which is when the body absorbs too much iron.
“So he had known for much of his life… that he had done organ damage and it was just a matter of time before something was going to come from having toxic blood.”
What came was liver cancer. “There was nothing they could for him,” his son recalled.
Regan senior was thrilled that the laws allowed him to choose his own death.
Like McLellan, he had a living wake of sorts, even singing goodbye to his grandchildren.
Under the current law, and for Regan’s dad, a patient must be able to pass a test on the day of the procedure that shows he is of sound mind to move forward.
Currently, there are proposed amendments to the Criminal Code — Bill C-7 — that would, among other things, remove that provision for those who had given prior consent.
“Which makes a lot of sense,” Regan said, noting that when people have to be able to pass the test, they may actually have to choose to die sooner in order to pass it.
Having experienced his father’s death through MAID, Regan said he would wish it for himself.
“I would wish it for anybody who had a belief system that allowed him to do this. I think it is very natural and peaceful.”
More end of life care options and information can be found through the Sea to Sky Hospice Society.
Link to article in the Chief News:https://www.squamishchief.com/in-the-community/medical-assistance-in-dying-available-in-the-corridor-3352002
The day can be long and exhausting for patients who are receiving cancer treatments at the Squamish Hospital. To help, Sea to Sky Hospice Society volunteers can break up the day with a tea service visit that includes tea, a homemade snack and a chat.
The rickety tea service trolley cart at the Whistler Blackcomb Foundation Sea to Sky Community Hospice will soon be replaced with a newer model, thanks to a donation from GFL Environmental.
The hospice is located in a renovated wing between Squamish Hospital and Hilltop House.
“The hospice is near and dear to my heart,” said GFL Squamish’s Denise Imbeau who has also been a volunteer at the facility.
” I have lost loved ones and the hospice has been right there… I think they are the unsung hero. People don’t really think about hospice until they need them, and then they are right there for them.”
The late Bill McNeney was a friend who was very supportive of the Sea to Sky Hospice Society and so Imbeau said she wanted to carry on helping the hospice society in his spirit.
The Full Circle Project grant of $4,000 will also go towards hospice bereavement programming, which is ongoing in a virtual format during the pandemic. Socially distanced bereavement walks outside are also ongoing.
With COVID-19, the tea service was suspended, but hopefully will be relaunched soon. The society members are brainstorming with medical experts about how it can be safely carried out with pandemic protocols in place.
“The service that we do is not just for people who are in their immediate, final weeks of life. We want people to start thinking about these things earlier on in the trajectory and we also want people to know that we provide services for caregivers and those who are left behind, for bereavement,” said Jen Dunkin, the board chair of the Sea to Sky Hospice Society.
“Yes, we provide support for individuals who are nearing their end of life, but we also want to support those who are around them.”
The newly built hospice started receiving patients October 1, 2019; there were 57 admissions in it’s first year of operations according to Dunkin.
“We are seeing patients from throughout the corridor: from Furry Creek through Pemberton… and even D’Arcy” she said. “That was one of the main goals of building the hospice facility – so that we can improve access to individuals throughout the corridor, not just in Squamish. So that is really great to see.”
Since it opened, the hospice palliative care team has provided end of life care, pain and symptom management care, respite care, and medical assistance in dying care, she added.
“We have provided a full scope of services and used the unit to its full capacity, though the public areas have been temporarily restricted due to COVID”.
Typically approximately 50 volunteers donate their time to provide direct patient support at the hospice, Dunkin said.
While the pandemic has obviously presented challenges for the hospice volunteers, staff and patients, there have been some unintended positives. The facility’s outdoor patio area with planters was intended for patients to be able to look out at, but has also served families well as they stay outside looking in at loved ones during the pandemic, Dunkin said.
“That has been a really nice unintended benefit of that particular outdoor area.”
The Sea to Sky Hospice Society virtual AGM is on Oct. 26; an online bereavement support group will start on Oct. 27 on Tuesday mornings.
For more information go to http://seatoskyhospicesociety.ca/
For the link to the original article in the Squamish Chief, please click here: http://squamishchief.com/in-the-community/the-giving-kind-in-squamish-3351945
Online Grief Support Group
Tuesdays January 19th – February 23rd
10:00am-11:00am
These sessions are free of charge, but registration is required.
Please contact the Sea to Sky Hospice Society for more information: hospice.seatosky@vch.ca
Things may be different this year but the opportunity to pause and reflect on the loved ones we have lost seems as important as ever.
Are you, a family member or someone that you know experiencing grief this holiday season?
“The reality is that we don’t forget, move on, and have closure, but rather we honour, we remember, and incorporate our deceased children, siblings, parents and partners into our lives in a new way. In fact, keeping memories of your loved one alive in your mind and heart is an important part of your healing journey.”
-Harriet Schiff, author of The Bereaved Parent
We have put together material to assist you with dealing with your grief over the holidays. Please click here to view or download:
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