Chronic Disease Management and End-of-Life Care in Ontario: A Social Ecological Review

October in the Greater Toronto Area (GTA) means a few things to me: fresh, crisp air and colourful leaves, Thanksgiving and Halloween (arguably the most relaxed and fun holidays of the year!), and the beginning of the fall/winter surge in the local hospitals. Pre-pandemic, Ontario hospitals were predictably stressed during this time period every year, with an increase in Emergency Department (ED) visits leading to an increase in hallway medicine and care being delivered in less-than-optimal spaces. All predictability was lost during the COVID-19 pandemic as the novel Coronavirus replaced Influenza as the driving virus of concern in our hospitals. Now, in the beginning of the 2022-2023 fall/winter season, with unprecedented staffing shortages and ED pressures, GTA hospitals are bracing for the first post-pandemic surge.

As I consider the increasing number of patients waiting in ED for increasing lengths of time, I think about the patients and their individual stories. I have noticed that patients seem to be coming in sicker, and they are staying in hospital longer, exacerbating the challenges with patient flow and worsening the backlog we see in the ED. With advances in medicine and an aging population, our hospital sees patients with multiple comorbidities living with chronic conditions in the community and frequently visiting the ED when symptoms flare up, especially at or near the end of their lives. It makes me wonder: how can the Ontario health care system better support end-of-life care for people living with chronic conditions in the community?

With such a complex patient population, there are many influencing factors at play. In order to explore end of life care in Ontario, I chose to apply the Social Ecological Model of health. Urie Bronfenbrenner's theory describes the multiple factors affecting human development, using a nesting circles model to illustrate the increasingly distant (but still powerful) influencers: microsystem closest to the person, mesosystem next, exosystem, macrosystem and finally chronosystem (Kilanowski, 2017). This video explains the theory in a simple, informative way. Bronfenbrenner's theory has been adapted to apply to health care, as seen in the figure below.

(Ecology of Health and Medicine, 2017).

In order to answer my question "how can the Ontario health care system better support end-of-life care for people living with chronic conditions in the community?", I used the Social Ecological Model and addressed the question from each level of influence.

Individual

At the individual level, I consider the patients themselves. I wonder about each person's understanding of their illness and disease trajectory. How much time have they spent considering their own mortality? Where and how do they want to spend the end of their life? Have they made these wishes clear to their next of kin and healthcare team? Bekelman and colleagues (2016) explored end of life care in 7 developed countries and found that one thing was fairly universal: despite the majority of people wanting to die at home, in reality, many people spend the final moments of their lives in hospital.

Interpersonal

The health and wellbeing of our patients is inextricably linked to the level of support they have in the community. Close friends and family members advocate on behalf of patients, ask deep questions and often lead disposition discussions, community care planning, and have a large influence on end-of-life care decisions. I have heard patients make certain decisions because they don't want to burden their family, and I have also had patients who opted for all life-saving measures because they didn't want to let their family down by not perceivably fighting until the very end. Often patients and their families have expectations that are not realistic when it comes to predicted disease progression and functional decline associated with their chronic condition and/or comorbidities. As healthcare providers in busy hospitals, I find we sometimes miss having fully transparent conversations regarding prognosis, and we need to probe deeper to tease out what the patient really wants when it comes to end-of-life care.

The COVID-19 pandemic changed the social network of many people, including patients managing chronic conditions in the community. Older adults living in retirement homes (RH) and Long-Term Care (LTC) settings had limited or restricted visitation, especially during times of cycling COVID-19 outbreaks. In hospitals, visitor restrictions decreased the involvement of family members in the care of our patients. Giosa and colleagues (2022) summarized an increase in caregiver burden felt during the pandemic, specifically for increased emotional support needed for patients struggling to cope with the stress of social isolation. They also outlined that the home care system in Ontario leaves patients' family members with the majority of caregiver burden, and with modern changes in living situations and increasing societal financial strain, this burden is becoming too much for many people to manage.

Organizational

Patients living with chronic conditions in the community often become "frequent fliers" at the hospital. Chiu and colleagues (2022) identify "frequent users" of the ED as people who visit the hospital at least 5 times each year. These patients, being in hospital so often, are acutely affected by hospital operations including patient wait times in ED, length of time spent after admission waiting for an inpatient bed, increased length of stay, and staffing shortages.

Often older adults living with multiple comorbities and nearing the end of their life become quite frail and the level of care they require becomes too much to manage independently (or with limited family support) in the community. Many of these patients require transition to more supportive, assisted living type RH settings or LTC facilities. Frailty is directly linked to increased risk of death, indicating a significant need for supportive end-of-life care in these RH and LTC settings, which is not yet standardized in Canada (Harasym, 2020).

Community

At the community level, I consider each patient's ability to access the care that they need in the way that they need it at the end of their lives. Quach and colleagues (2021) reviewed deaths in Canada between 2013-2016 and discovered that recent immigrants (those who became Canadian citizens after 1985) were 1.2 times more likely to seek acute care treatment in the hospital setting at the end of their lives and were 1.1 times more likely to die in hospital than people who resided in Canada longer, despite equal expression of wishes to die at home. Algu (2021) calls out inequalities in palliative care provision for racialized individuals in Canada and the United States. Algu describes a lack of effort to arrange for formal interpretation leading to poor symptom management, as well as decreased access to palliative care services, lack of communication about end-of-life care wishes, and unconscious biases held by healthcare workers due to ongoing systemic racism.

Public Policy

Public policy increasing access to palliative care services in Ontario is necessary to better support end-of-life care for our patients. The Government of Ontario (2021) states that they are investing in palliative care and hospice services to better support patients and their caregivers in the community. In order for this to be effective, access needs to be universal, regardless of race, income, or location of residence. Encouragingly, the stated government investment includes supporting the Ontario Palliative Care Network (OPCN), which has a mandate to put the patient and their families first regardless of the above factors.

(Government of Ontario, 2021)

Clearly there are multiple factors affecting one's ability to manage their chronic disease in the community setting, as well as how and when they choose to (or are forced to) access acute care services near/at the final stages of illness. Individual beliefs and behaviours, influence and support (or lack thereof) from friends and family members, access (or lack thereof) to community supports, ongoing inherent systemic racism, and policies addressing global need for standardized access to supportive end-of-life care ALL intimately affect every single patient outcome. The reality is that many individuals with end stage chronic conditions become frequent visitors to their local ED, even though we know that most of these individuals would rather manage their conditions at home, spending their last moments as comfortably as possible outside of the hospital setting. Given this disconnect, and the multiple layers of influence that need to be addressed in order to bridge the gap, there is clearly no quick fix to the current ED backlogs and hospital system pressures we are facing heading into the fall/winter season in Ontario. Acknowledging this, I recall a powerful book I read earlier this year by Atul Gawande (2014), and I find hope. It reminds me of the importance of being present with each individual patient, learning their story and their individual wishes, and not getting lost in going through the motions each day. The following quote from Gawande (2014) is powerful and leaves some food for thought as I continue to ponder how our healthcare system can better support our patients to regain control over how they spend the end of their lives:

Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits, and the potential value of this power was a central reason I became a doctor. But again and again, I have seen the damage we in medicine do when we fail to acknowledge that such power is finite and always will be. We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way. Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding? (Epilogue)

References

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