A tale of two patients: The ‘postal code’ lottery of palliative care
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.
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.
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 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.
Darren Cargill, MD FCFP (PC) FRCPC HMDC CCPE Medical Director, Hospice of Windsor and Essex County Inc., Adjunct Professor, Western University. Past Chair, OMA Section of Palliative Medicine.
For more background about Kyra’s story, please see the following articles:
John’s story is eloquently described by his son, Anthony, in this report from the OHA: