CCBI News – Access to Palliative Care

April 14, 2023

Dear Friends of CCBI,

Access to Palliative Care

CCBI has always advocated for good quality palliative care, seeing it as a human need and as an aid to maintaining dignity and morale at end-of-life as people move into the liminal stage before death. It is often an important aspect of our spiritual as well as physical journey, and it needs to be well done and available to all who can benefit from it. We sometimes speak of it almost as an ‘alternative’ to euthanasia, but it is much more than that. It stands alone as the way in which we can accompany one another from life into death, focusing on the needs of the dying person and helping to remove the all-too-human fear of abandonment even as we look to Christ’s Resurrection and our own. We do not come into this world alone and we are not meant to leave it that way, either, although circumstances vary.

Availability of quality palliative care is an ethical as well as spiritual matter, and the COVID-19 pandemic highlighted existing inequities in its distribution, statistics showing that homeless people, those in rural or remote areas and Indigenous peoples had the most difficulty in accessing such care. The strongest recommendations of a collaborative group headed by Health Canada after the pandemic were to increase technological use and to extend the palliative reach in communities by “…streamlining communication across healthcare settings and incorporating virtual technologies….” The group’s report, an excellent resource for many facets of palliative care, reminds society that home and community-based services played and continue to play a ‘pivotal’ role in palliative and end-of-life care needs, and this certainly fits with the wishes of most people whose stated preference is to die at home.

Access to Palliative Care in Long-Term Care Situations

People admitted to long-term care tend to stay for an average of 2 years, usually until end of life, which means palliative care is often an important component of their stay. The above study showed, “Most long-term care residents with less than 6 months to live did not have a record of palliative care,” but also noted: “It is likely that many got care that was palliative in nature, as most long-term care facilities consider care at the end of life to be a vital part of their practice.” While this may be the case, the report also pointed out some drawbacks, noting that some facilities lack the skills and assessment tools for standard palliative care services, while the pandemic itself had already indicated shortcomings in many LTS homes such as lack of equipment, short-staffing and inadequate wages.

Access in Acute Care Hospitals

Even though more people are now able to die at home, some statistics show that 42% of Canadians died in acute care hospitals (figures for 2016–2017). The Canadian Institute for Health Information (CIHI) report says: “Our analyses show that 94% of patients who died in a hospital could potentially have benefited from palliative care during their final stay. Of people who died in acute care hospitals in 2016-2017, 25% received primarily palliative care, which means they were identified as palliative patients for the longest portion of their hospital stay. Many patients (44%) who died in hospital were initially admitted for an acute health problem, but they were designated as palliative patients after the problem worsened or for a shorter portion of their hospital stay. It is not clear whether these patients received specific palliative services or were identified as palliative only because curative treatments were stopped.” If these figures are accurate, they are revealing an incredibly high number of Canadians who do NOT receive the benefits of palliative care together with an unacceptable number dying in an acute-care setting – contrary to the stated wishes of so many, some of whom receive an unnecessary level of care.

Access in Hospices

In most cases residential hospices admit only those who are in the very last stages of life, but they certainly play an increasingly important role in the provision of palliative care. There is, apparently, no formal collection of information from Canadian residential hospices, but the CIHI in partnership with the Canadian Hospice Palliative Care Association (CHPCA) conducted a survey in February 2018, contacting 88 hospices. The survey found that eligibility for admission is based on life expectancy, ranging from 4 weeks to 6 months, but, in fact, the majority of hospices require patients to have a life expectancy of 3 months or less to be admitted. One of the objectives of hospice is to provide people with quality care once they become palliative, and some hospices have extensive programs from which people can benefit for much longer periods before they die. Hospice is, unfortunately, still seen and treated by some as the place where people go ‘to die,’ at the end of long stints in hospital acute care. For example, of people in Ontario and Alberta in 2016–2017 who died in either home care, long-term care, an emergency department or in a hospital, nearly two-thirds (62%) were formally identified as palliative patients only in acute care and usually in their last month of life. That is not to say they will not benefit from palliative care at that stage, but many were eligible much earlier, but, sadly, this was not recognized or made possible.

Preventable Hospital Care in the Last Months of Life?

People most often need more care as they get closer to death, but instead of hospital care as related above, they could receive appropriate care in their own community. Besides, some types of hospital care are not always beneficial in the last month of life, such as admission to an ICU. Some statistics from Alberta or Ontario in 2016–2017 show that even at end-of-life, 58% of patients were admitted to emergency, while 16% were admitted twice. 53% of people at end-of-life were admitted to acute care, with 8% being admitted twice, and 16% were sent to an ICU. Reforms of the system will surely call for improvements here, recognizing that while no system can be 100% effective, results already show that people who received palliative care earlier in their end-of-life stage were much less likely to be part of those cohorts.

Improved Access Through Integration

There has long been a recognized need for earlier integration of palliative care in the community, in order that services can be planned more effectively. The CIHI article shows that, among patients who died with heart failure, “…a home-based palliative care model that involved primary care providers, cardiologists and palliative care specialists, was with fewer visits to the emergency department, admissions to hospital and intensive care near the end of life, and a lower likelihood of dying in hospital (41% v. 78%) than usual care.” This indicates that some people are achieving their desire to die at home while freeing up beds in acute care spaces and at the same time using fewer treatment resources, all of which are positive outcomes for patients and health services.

Access and Wait Times

A downside is that, once admitted to hospital care but then designated palliative, those patients often face wait time until a palliative facility becomes available. The statistics in this area are unfortunate: waiting periods for an alternate level of care (ALC) can be lengthy, with a median wait of 9 days. It was disconcerting toread that,“Nearly half (47%) of palliative patients waiting for care in a more appropriate setting died before they could be discharged to one.”If accurate, this highlights the problems Canadafaces in makingpalliative care both accessible and distinct from acute care, needing to provide more facilities and/or community care and to develop coordination of that care.

Access Improvements Through Better Eligibility Criteria, Coordination and Funding

The lengthy and informative CIHI report states this succinctly: “The lack of a common definition of palliative care, as well as limited resources and funding, also contribute to system-wide limits on access to early and integrated palliative care.” Lack of awareness and reluctance to discuss palliative care and end-of-life issues further contribute to the delay of access to services. It is known that many more people could benefit in their last days by receiving good quality care. Research suggests that eligibility criteria be developed and standardized to support early access to required palliative services in the most appropriate place, along with stable funding, “… to ensure that integrated and coherent programs are developed across the health system.”

Universal, quality palliative care is clearly a reasonable societal aim, and one that a Catholic perspective must continue to espouse and try to bring to fruition. We owe that to people at end-of life.

Home and Community-based Palliative Care: Shaping the Future from Lessons Learned during the COVID-19 Pandemic (cdnhomecare.ca)

Access to Palliative Care in Canada (cihi.ca)  (Especially Pp 45-6)

new_fact_sheet_hpc_in_canada-summer2017-final-en.pdf (chpca.ca)

https://www.ontariopalliativecarenetwork.ca/guidelines-resources

Pope Francis’ Intentions for April

For a non-violent culture

We pray for the spread of peace and non-violence by decreasing the use of weapons by states and citizens.

“Let us remember that, even in cases of self-defense, peace is the ultimate goal, and that a lasting peace can exist only without weapons,” Pope Francis said. Vatican News Service

Moira and Bambi