In the 1999 movie, the Matrix, Morpheus offers the protagonist Neo a choice between two pills. A red one and blue pill.
The blue pill means the status quo. The story ends and no one is the wiser. The red pill means the story moves on and Neo’s journey moves forward.
Photo of Kyra Roberts.
So, what on earth does this have to do with palliative care? Like everything, it begins with a story. Two stories, in fact.
The first story is about Kyra Roberts. Kyra was born in Edmonton and raised in Windsor, Ont. She lived with her family, Brenda, Terence and Tiffanie. Kyra really liked Disney and visited Disney World regularly with her family prior to being diagnosed with ovarian cancer when she was 22.
The next story is about John Dale. John was born in 1938 and lived most of his life in Toronto. He has five children, including Anthony and Nancy. Nancy once helped me make a video about a patient of mine named Thor. I never knew John but Anthony and Nancy tell me he was the best father ever.
Photo of John Dale.
John was 73 when he was diagnosed with a recurrence of his colon cancer.
Despite their age and diagnosis, John and Kyra’s stories share the fact that they both faced a life-limiting illness and both lived in Ontario.
But this is where their stories diverge.
Kyra lived blocks away from one of the best palliative care programs in Ontario – the Hospice of Windsor and Essex County. Founded in 1979, the Hospice of Windsor has focused on providing patients with high-quality palliative care and supporting families and caregivers.
Their vision “is to be an oasis of peace, comfort and trust supporting the whole person with respect, compassion and empathy.”
Boldly displayed on all their letterhead and materials: Educate. Support. Empower.
Kyra’s case was never an easy one. To date, it was one of the hardest and most challenging of my 15-year career. When she was referred to me, she was bouncing in and out of the hospital with severe symptoms relating to her cancer. Despite their best efforts, her oncologist and family doctor were not in a position to give Kyra the help she needed. As such, she was referred to our program.
I cared for Kyra for more than two and a half years. With the help of my team, home care services through CCAC (now the LHIN), including her visiting nurse and other support staff, we provided Kyra with 24/7/365 care. During this time, she made one last trip to Disney World, a special place for her and her family. Her souvenir mug still sits on my shelf.
Kyra’s souvenir Disney mug.
Kyra started palliative sedation for a terminal delirium Aug. 25, 2017. It is the only time our program has used propofol in the community setting. A few days later, the family home flooded. It was one of those so-called “hundred-year storms” that seem to happen more frequently these days. We asked Kyra’s family if she would have wanted placement in our residential hospice. Kyra said, as only she could, that if we made her leave the house, she would come back and freakin’ haunt us. I, for one, believed her. And she didn’t say freakin’.
She died at home, with her family present, on August 30, 2017. She was 25.
John’s case, unfortunately, is very different. I did not provide care for John but his case is summarized elegantly in this article by his son, Anthony.
John’s cancer recurred 18 months after his initial surgery. When cure was no longer an option, John fell into a “blank zone” in our healthcare system that was difficult, if not impossible, to navigate.
Despite a loving and knowledgeable family who understood the system, John was never assessed for palliative care support. He did not receive the care he needed or deserved. As such, he did not die in the setting of his choice. He did not die with the dignity we expect for our loved ones.
John Dale died in hospital, sharing a room with another patient, on Aug. 30, 2014. He was 75.
As Morpheus exclaimed: “I do not see coincidence, I see providence. I see purpose. I believe it our fate to be here.”
I have written extensively about the paucity of palliative care in Ontario specifically and Canada in general. The need for palliative care was recognized in the 1960s by Dame Cicely Saunders in England. We have had 60 years to get this right. And we have failed. Miserably.
The evidence for palliative care is irrefutable. It provides better outcomes for patients facing a life-limiting illness while simultaneously cutting healthcare costs and use by limiting inappropriately aggressive care at end of life. Instead, it provides care in settings more appropriate for patients such as their homes or a hospice. While healthcare savings are not the goal of palliative care, I refer to this as a “beautiful side effect.” These savings can then be reinvested into other areas of the healthcare system such as mental health, addiction, public health and preventative care. As such, palliative care contributes positively to the sustainability of our universal publicly funded healthcare system.
Better and cheaper? Seems to be good to be true.
Well, it’s not. I have written about this previously in HealthyDebate. Currently, I am working with the OMA and CMA to replicate these results in Ontario and Canada, respectively.
I often have referred to the indifference to palliative care as “benign neglect.” Look at any chart listing medical specialities; you will rarely see palliative medicine. Look at a politician’s political platform; rarely will you see palliative care highlighted, even under health care.
But ask the general public about what needs to be fixed in our healthcare system and you will hear a very different story. And those stories are not pretty.
Doing almost exclusively home visits for most of my career, I have sat on more couches than I can count in my 15 years of practice. Patients have told me how the system has let them down, time and time again, until our hospice got involved. Dying patients do not worry about hurting feelings, they tell it like it is.
So, at what point do we simply label this indifference for what it is: neglect. Neglect of a vulnerable patient population and prejudice against patients who cannot be cured by fancy machines, complex surgery or expensive chemotherapies. Why do we romanticize “cure” and ignore “care?” When did we forget the simple principle of “cure sometimes, treat often, care always”?
My story is about two patients.
One of these patients had access to a high-quality palliative care program that boasts highly skilled family physicians and Royal College specialists; that is supported by a team that includes nurses, nurse practitioners, social workers, spiritual care, supportive staff and an army of volunteers; with two residential hospices, a community outreach program and access to a PCU; that is integrated with LHIN home care services and available 24/7/365; that offers wellness programs to lessen the burden on caregivers and families; that spans all care settings including inpatient, outpatient, home and long-term care; that has adopted virtual care enthusiastically with quality improvement baked into its DNA; that trains palliative care doctors, nurses and social workers at the highest level; that is 40 years in the making and growing every day.
The other patient did not. Just because of where he lives.
That is the “postal code” lottery for palliative care in Canada.
So, back to our pills. The red one and blue one.
The blue one means status quo. Take this pill and nothing changes. We keep doing what we are doing. Many patients suffer and die without dignity. Some will get the care they need, often too late and not where they need it.
The red pill means change. It means making a choice. It means drawing a line in the sand and saying “enough.” It means doing what needs to be done and doing it now, not four years from now. Patients get the right care, in the right place, at the right time, for the right reasons.
Taking the red pill means making the choice to invest in palliative care.
It means ensuring basic competencies for all healthcare providers. Doctors, nurses, social workers, personal support workers. Everyone.
It means funding programs to ensure patients get the care they need when and where they need it. There are 40 hours in a standard “work” week, yet every week has 168 hours. And there are 52 weeks in a year. Every year.
It means establishing an academic home for palliative medicine in every medical school. It means committing research dollars towards alleviating pain and suffering, instead of just cures.
Investing in palliative care means never telling a patient there is nothing more we can do because while we may stop treatment, we never stop caring.
Actions have consequences but so does a lack of action.
For the policy-makers, the decision-makers and those who hold the power to affect change, it is time to stop telling patients there is nothing more WE can do. Until now, we haven’t even really tried.
Dr. Bob Bell, former Ontario deputy Health Minister, once extolled the virtues of “heroic incrementalism.” In most cases, I would agree.
This is not one of those cases.
So, you have a choice before you. Red pill or blue pill.
It’s up to you now. Choose wisely.
For more background about Kyra’s story, please see the following articles:
https://windsorstar.com/news/ovarian-cancer-survivors-hope-awareness-will-lower-terrible-death-rate/
https://www.canadianhealthcarenetwork.ca/a-decade-of-poor-progress-on-palliative-care
https://www.hqontario.ca/Portals/0/documents/system-performance/palliative-care-report-2019-en.pdf
https://www.legacy.com/obituaries/name/kyra-roberts-obituary?pid=186551318
John’s story is eloquently described by his son, Anthony, in this report from the OHA:
https://www.legacy.com/obituaries/thestar/obituary.aspx?pid=172321814
Photo by Daan Stevens on Unsplash
The comments section is closed.
Until and unless palliative care is seen for what it is; As necessary a component of our healthcare system as are emergency rooms (imagine if your local ER depended on golf tournament type fundraisers to fund it!) then it will remain a “nice to have” instead of a “need to have”. Fund it from the same source as other essential health services (i.e. medicare) or watch it continue to remain a postal code lottery….
As a hospice volunteer, I have had the honour to sit with people who are dying, both in a hospice setting and in a hospital setting. Staff at both are caring and professional but the atmospheres are so different….soft music, dimmed warm lighting, quiet, beds with soft blankets like home, respite for families to eat and drink, to gather in a living room setting, to sleep in the room with their loved one in a comfortable bed, to shower in the morning, to lead a procession with staff and volunteers accompanying them (hospice supports the family and their dying loved one)
Palliative consideration is a particular clinical consideration that centers around giving patients alleviation from torment and different indications of genuine sickness, regardless of the analysis or phase of the illness. Palliative consideration groups mean to improve the personal satisfaction of the two patients and their families.
I fully support the idea of hospice. Being a nurse for many years, I fully understand the need. What I do not understand is why hospice care does not include MAID,if that becomes the patients wish. To transfer a dying patient to a different location to access MAID seems beyond cruel, and not upholding the hospice mandate to provide kind and compassionate end of life care. I feel strongly that this needs to change, having just gone through this situation with a loved one.
THE COVID-19 EPIDEMIC has made us very aware of the “seasons” of our lives: from our birth in “spring,” until our death in “winter.” But how does one care for a TSERMINALLY ILL person? Here’s help!
— Dr. Gerald D Griffin, a hospice physician, humanely discusses the needs of a terminally ill person, in “The Last Day of Winter: Secrets from the Seasons of Dying,” the book he has written with his co-author, medical social worker Pam Umann. Read it before you need it! Buy it wherever books are sold – or you can get it on Barnes & Noble, Bokus, Thriftbooks, or on Amazon.
— These authors know, very personally, what they are writing about. The two experienced medical professionals hold the reader’s hands and lead them through life’s most difficult passage — helping the patient, the patient’s family and friends, and the patient’s caregivers, by exploring the needs of the terminally ill patient. The 200-page book educates readers about potential barriers they may encounter, while either providing or receiving needed care and support. Personal stories of triumph, isolation, fear, and grief are shared – equipping readers with the knowledge that they are not alone on the journey.
— The easy-to-read book begins in the metaphysical September, with feelings of apprehension as the disease process begins, and ends on the last day of Winter in the terminal phase. “The Last Day of Winter” helps readers understand the importance of the relationship between each individual and the cycle of life – and between loved ones, as they face the “last day of winter” together.
— You can buy it on Amazon at https://www.amazon.com/Last…/dp/1948738414/ref=sr_1_1..
This is LONG OVERDUE, we must learn from our Past!
But, then again, we are 80 & 77 years young, with natural aging medical problems and one of us with a compromised immune system!
We Pray we will have a great end of life health program waiting to welcome us and to see us on our final road of LIFE,
Gary Anthony and Sharon Dianne Foster Pattison!
Thanks Sharon and Gary.
You shouldn’t have to pray for something as basic as appropriate end of life care.
Dr. Carroll, Once again you have eloquently stated the case for palliative care focus/funding. Thank you, I’ll be sharing your piece widely. What we need now is some concerted advocacy across the province to ensure that the message is heard (and acted upon) by our policy makers.
Thanks Joan.
Please share.
I was texted by a colleague of mine who works in one of our local hospitals. She told me that her father died under similar circumstances as John. I am sure there are many, many more stories like this.
It is time to stop accepting this as the status quo.
Thank you for writing this powerful advocacy piece and for the skill and caring you bring to your patients and their families. All Canadians deserve the same access and quality of care.
Thank you Denise.
I agree. All Canadians do deserve the same access and quality of care.
What’s stopping us?
Thank you Dr. Cargill for a very compelling piece. I cannot find any argument to refute your advocacy. Other than the humanity, the Return on Investment (the “beautiful side effect” as you refer to it) makes this a ‘no-brainer.’ And yet, here we are…
You have been brutally honest in your piece …. what would you speculate is the real reason we (“we” as in our society, our politicians, our healthcare administrators) have not prioritized investment in palliative care over the years?
Sad as it is, the George Floyd murder has given wings to the Black Lives Matter movement, and hopefully there will be changes in society as result of that outrage. As a parallel, what do you think would trigger us to shift our perceptions about palliative care in Ontario?
Hi Abhi,
I would speculate that palliative care has a PR problem. We live in a death fearing society. As such, we have a bias towards medicine that can cure and prevent death. It is much easier to advocate for expensive medications, treatments and technologies aimed at curing and treating disease than “admitting defeat” and funding palliative and end of life care. It requires a paradigm shift in thinking.
I plan to write about this PR problem in the future.
Re: George Floyd and BLM. Sadly, I have often said it would take someone very important or the loved one of someone very important to die poorly to finally bring attention to this issue. I hope that won’t be necessary. So far, professional, compassionate, humanistic and economic arguments have not been enough to sway the tide.
Thank you for your question.
Thank you Dr. Cargill for your response. Please continue your advocacy. I would be happy to join in and help in your mission – please let me know how I can connect and help.
Share this wide and far. Stories tend to resonate more than facts and figures.
I am a palitive patients daughter, whom as a family decided along with the patient to stay at home for the end of life.
For the most part my mothers care from nurses, psw and palitive doctor have been okay. As for our main nurse she is good but neglected to inform the family of what LHIN would assist with from a hospital bed to supplies. I have to be in constant contact with the coordinator for guidance and assistance.
I know with COVID being apart of what we have to deal in our world today makes things tougher but come on should the lack of common curticy be ultered…..
I would love to become an advocate for patients & their families if someone could advise me.
I honestly believe in my heart that any palitive young or elderly are our heros and deserve the up most respect throughout their journey.
Hi Susan,
If you are interested in caregiver advocacy, reach out to @MaggieKeresteci on Twitter. You won’t find a better person to guide you on that issue.
What a wonderfully articulate piece. I am very proud that the University of Windsor has created a Palliative Care course as part of its BScN program in fourth year. It is encouraging to see that the efforts being put forth by yourself and your colleagues are being met with success. Having used your home-care program five years ago, it is exciting to see this increase in awareness and comprehension for future generations of healthcare workers.
Thanks Tessa.
Although I write from a physician perspective, I cannot emphasize enough the importance of nursing in palliative care. Whether it was the nurse educators at our hospice, the home care nurses through CCAC or many others, nursing is a cornerstone of palliative care. We are very proud to help educate and teach future nurses at the Hospice of Windsor. I wrote previously in Healthy Debate about the need for basic competencies for all healthcare providers. UWindsor is certainly helping to lead the way.
Having said that, there are still tremendous gaps in the system and that is the cautionary tale of John’s story. Sadly, he is the rule and not the exception.
Excellent article Darren. Always humbled by what you and your colleagues do. Palliative care needs support otherwise it cannot support those that need it. There should never be a blue pill.
Thank you for your kind words Voytek.
I have always appreciated the support you and the OMA have provided me and my colleagues.
As a patient – who advocates for, and actually understands that palliative is not a euphemism for ‘nothing more can be done’ – I humbly submit that there is still work to be done to ensure this is bottom up/top down understanding. That, and, in the fullness of time, to have #palliativecare consistently available and practiced to a consistent standard/staffing.
Thanks Kathy. As always, you are a great advocate for palliative care.
As a volunteer at Hospice I found your article most interesting & very informative, please keep doing what you do so compassionately, the Hospice needs more like you.
Look forward to your questions, comments or gratuitous insults :)
Your article is so timely and articulates what I feel in the field.
Thank you.
I am about to quote you to a palliative care manager to advocate for adequate resourcing.
Thank you again, paed pall care nurse in the ACT
Thank you Ashka.
Please quote away :)