Another physician shares that policies have cut down a lot of essential programs within the palliative care unit: “It’s like night and day from the time that I started to the way it is now.” “This has been documented . . . cut-downs, both in the community and in patient services.”
Hospital funding cuts may be part of a larger policy framework in recent years that aims to build the capacity of other sectors in the community to deal with end-of-life care. But savings often come from eliminating programs and services that address the emotional and spiritual needs of the patient. This, in turn, serves to cultivate a more clinical culture and experience within the hospital setting. As one physical shares,
Studies show that between 40 percent and 60 percent of patients in our Western type of societies (so Canada, the UK, and the Anglophone ones), 40 percent to 60 percent of patients say that spirituality is important for them, and for many of them, it is religion. This is important for them in their lives, particularly as it relates to end of life. But very, very few doctors and nurses even ask about this.
He goes on to explain, “You will not find dictations by doctors and nurses of the patients they saw—where it says past medical history, medications, allergies, family history—you will never see their spiritual or religious care or needs. We need to start challenging that.”
Another interviewee eloquently explains,
What I learned from people is that the most important part of death is probably to have peace. Not artificial peace. But a good death, I would say, is one with no regrets, or maybe there are some regrets, and then they are kind of reworked. Sometimes people may carry some mistakes and decisions they made in the past that keep bothering them. And then they come to the end of their life where often the stuff that has not been reworked in the past, let’s say like sexual abuse or abortion or divorce . . . all of this stuff, if it was not kind of processed, will haunt the person at the end of life.
Compassionate care within the hospital environment depends, therefore, on a holistic approach that values the spiritual and psychological needs of a patient alongside their clinical needs. Rather than shortchanging the quality of care and compassion within the hospital environment, our end-of-life care system must reorganize by building the capacity of the system as a whole (i.e., empowering long-termcare homes, home-care settings, and hospices) such that there is a reduced need for emergency-department visits, hospital admissions, and hospital deaths. The current reality in the Champlain region serves to exacerbate a system of growing inequality for end-of-life care, where compassionate care is relegated to certain spaces within the community, and the hospital offers a clinical and cold experience. Instead, the movement toward compassionate communities and end-of-life care must recognize and include the hospital such that a whole system of compassion is cultivated. In such a system, community compassion is enabled and integrated within the hospital setting, and conversely, clinical care is integrated within the community.
The current reality in the Champlain region serves to exacerbate a system of growing inequality for end-of-life care, where compassionate care is relegated to certain spaces within the community, and the hospital risks becoming a place that offers a clinical and cold experience.
Long-Term-Care Facilities and Compassionate End-of-Life Care
1. A growing care gap. As medical advances enable people with chronic diseases and complex care needs to live longer, there is a growing need for compassionate, home-like spaces that can provide comprehensive and holistic care. Despite the preference by most Canadians for a natural death at home, the vast majority are unable to experience this. In the present context, as care needs increase and home-care supports (both publicly provided and through natural caregivers) become strained, many Champlain residents have little choice but to be placed on a wait-list for one of sixty long-termcare facilities within the Champlain region.
When an applicant applies for long-term care, the applicant is assigned a priority category that will affect their wait time. The average wait time to enter long-term care from home in the Champlain region is 134 days.17 Many people wait much longer than this period as patients from hospitals are continually given priority to those applying from home. The period of waiting can be extremely stressful for the family and other caregivers. Indeed, often what drives seniors into long-term care is not their own needs, but rather that of their caregiver.18 Another reality is that many of these needs then end up in expensive hospital visits. Leah Levesque, vice president of patient care at the Queensway Carleton Hospital, describes the situation in a 2016 article posted in the Ottawa Citizen: “It’s not unusual for Queensway Carleton Hospital to have 50 seniors spread across the hospital and filling its 30-bed Alternative Level of Care (ALC) ward—a holding spot for patients whose acute illness is under control but who are too sick to go home and don’t have a bed in long-term care either.” Similar pressures are experienced in acute care, “where 14 percent of acute care space is taken up by non-acute patients,” shares Dr. James Worthington, executive vice president of medical affairs.
Indeed, provincial numbers paint a similar picture. While long-term wait times for those applying from home have declined from their peak of 190 days in 2008, when Ontario’s “Home First” program began, they have steadily increased in that same time period for those entering long-term care from the hospital.19 The broader health system is not improving, therefore, so much as a different illness trajectory is transpiring in response to an acute-care gap, a trajectory where the hospital plays a larger role in providing care and access to long-term-care facilities.
2. A need for emotional, spiritual, and psychological supports. A number of recent reports and statistics paint a troubling picture of Ottawa’s long-term-care facilities. An article posted in the Ottawa Citizen on August 15, 2017, reports that “the City of Ottawa has been slapped with an unheard of blanket order from the province to improve safety and care at three of its four long-term care homes following a string of incidents, including the repeated punching of one resident by a caregiver and head injuries suffered by another resident that was later covered up.”20 An earlier report by the Canadian Union of Public Employees argues that low provincial funding shortchanges Ottawa’s seventeen longterm-care facilities by $1,460 hours of care daily, which equates to 273 full-time care staff.21 And a recent Health Quality Ontario report indicates that 24.6 percent of long-term home residents in the Champlain region experienced worsening depression between 2010 and 2016.22 These indicators portray a system in need of reform, where formulas have overridden the focus on compassionate care, and where a medical model is simply not able to keep up with a changing landscape of needs.
As medical practices make it possible for those with chronic care needs to live increasingly longer lives, and as the rates of those suffering from dementia increases in our society, there is a dire need for compassionate, home-like spaces that have the capability of addressing complex care needs right up until the end of life. Long-term-care facilities can play an integral role in providing this compassionate care within the community, but there is clearly a need for improvement in some of these spaces. The Canadian Hospice Palliative Care Association explains that in the last fifteen years, there has been significant change in the responsibility of Long Term Care (LTC) homes despite their recognition of this:
Providing care at end-of-life has become vital to LTC practice, however, palliative care has not been incorporated into the culture and self-perceived role of LTC. Further, homes are not equipped with some of the specialized knowledge and skills and dedicated resources to provide palliative care. Only once these gaps and barriers are addressed will we be able to create formal palliative care programs in LTC homes.23
Indeed, one physician shares that he met with senior leaders of a long-term-care facility to discuss opportunities to improve their capacity to provide medical care at end of life and thereby reduce reliance on expensive hospital visits, but was disappointed when the leaders replied: “This is too expensive, . . . and besides, families want their loved ones to go to the hospital at the end.”
While we do not suggest that all long-term-care homes in Ottawa and the Champlain region are void of compassionate care—and in fact, several conversations clearly portray the opposite—there are some important indicators in the Champlain region of a system under stress. Similar to hospital settings, long-term-care facilities seem to be experiencing a reduced capacity to provide holistic and compassionate care. Funding models that compartmentalize care needs do not easily fit alongside a compassionate end-of-life-care approach, and may in fact serve to overly professionalize and depersonalize the spiritual, emotional, and psychological aspects of the dying process. These aspects can only be detected by being present, actively listening, and showing compassion.
Insufficient home-care and caregiver supports.
The province of Ontario has made home and community care a priority and has also identified the important need to support natural caregivers in these care environments. Many of these supports are publicly funded through the Champlain Community Care Access Centre (CCAC)24 and include home-care visits for nursing care, personal support care, occupational and physical therapy, counselling, and home visits from doctors and nurse practitioners. The amount and type of care that someone receives varies depending on the severity and nature of the illness.
In the Champlain region, 74.1 percent of palliative-care patients who were in the community in the last month of life received at least one home-care service in that period; 46.2 percent received palliative-specific home-care services, which typically involves more hours of care per week; and 41.5 percent of palliative-care patients had at least one home visit from a doctor in their last thirty days of life.25
But what is the story behind these numbers?
An article published by CBC News in December 2016 paints a troublesome picture of CCAC homecare supports.26 The article describes a stressful family situation in which a mother nearing end of life is in need of more home supports but unable to access them. The high demands of her care is taking a toll on her family. One family member explains: “We get her out of bed, we get her into the bathroom in the morning. We have to lift her out of bed. We have to stay right behind her because she could fall. We have to lift her off and on the toilet.” In the same article, Dr. Hacker, a palliative-care physician, explains that he and other palliative doctors were informed by the Champlain CCAC that it would have to cut back on personal support worker hours. The reduction means that palliative-care patients are being placed on a wait-list for sufficient home care. Dr. Hacker explains that “the government has been focusing on trying to get care out of expensive hospitals and into the community where costs are less, where patients want to be . . . but unfortunately the funding has not followed the patient home from the hospital.”
To be sure, the Champlain LHIN and Champlain CCAC have recognized and sought to address this growing gap.27 To understand root causes and strategies for addressing the growing demand, the LHIN commissioned a study by Preyra Solutions Group.28 The study was completed in April 2017 and reports that in recent years, the wait-list for CCAC services has grown such that by December 2016, there were nearly 3,500 people formally waiting for CCAC services in the Champlain LHIN. While noting the CCAC’s efficiency in administrative costs (7 percent less than provincial average) as well as its care and case-management model, the report finds that the substantial unmet need for home-care services in the Champlain region is primarily due to inequitable funding. Currently, the LHIN receives $240.5 million to fund home-care services. If the Champlain LHIN were funded for home care using a population-based model rather than one that is user based, it would receive an additional $31.5 million as its share of provincial home-care investments, which could then be potentially directed to 6,000 more home-care clients.29 As A user-based model, such as it is currently structured, does not account or adjust for a growing wait-list.