CCBI News: Home Palliative Care: Some Challenges

March 1, 2024

Dear Friends of CCBI,

Home Palliative Care: Some Challenges

Many people advocate for good palliative care for all who need it, and there is no doubt that we are talking about a substantial number. Most palliative care professionals say that nearly everyone would benefit from such care, unless, of course, one dies suddenly or even has absolutely no need of medicinal help at end-of-life. In the latter case, people would still benefit from the holistic aspects of palliative care, since their spiritual and psychological benefits are clear, whether provided as a professional service or in an ‘accompanying’ mode of friendship and support. Next week we will review some person-centred suggestions for making end-of-life experiences more purposeful and even productive, but this week we will review an article from the Canadian Medical Association Journal brought to our attention by a friend of CCBI.

A Concerning Change in Statistics?

While we extol the benefits of palliative care and call for its increasing use the reality of its availability is perhaps worse than many of us thought. For several years, on the basis of other studies, we had been initially saying (since 2006) that palliative care was available only to 15 % of the Canadian population who need it or would benefit from it, and that figure was gradually increased in some studies to 37/40% of people. The research presented in this article points in a different direction, and, if accurate, is of grave concern for those at end-of-life and for those who promote it. The study notes that now, in 2024 in Canada’s largest province, that only 15% of patients requiring palliative care receive such services in the year before death, meaning that nothing much has changed despite improvements in care and in growing awareness of the need for it. “The study reported on palliative care services accessed by people with a predicted 6-month mortality risk using a prognostic tool called the Risk Evaluation for Support: Predictions for Elder-life in their Communities Tool (RESPECT) and vital status.”

It showed that 50.6% of those with a RESPECT-estimated median survival of fewer than 3 months received at least 1 nonphysician palliative home care visit before death. This proportion declined to 38.7% and 29.5% among decedents with an estimated median survival between 3 and 6 months and between 6 and 12 months, respectively, showing that many older adults in Ontario do not receive any palliative home care before death. The article reiterates many claims about palliative care that have been substantiated in previous studies, e.g., it is “…associated with improved end-of-life outcomes, such as improved quality of life, reduced distress, and better symptom management.” Yet it is still commonly misunderstood as being only for patients who are actively dying and in their last days or weeks of life.

As the authors tell it:

In this study, we described health care utilization patterns among home care clients across mortality-risk profiles generated from RESPECT. We found that individuals who were identified as being likely at the end of life, based on a median survival of fewer than 3 months, were more likely to receive a nonphysician-provided palliative home care visit and less likely to receive institutional care provided in hospitals, emergency departments and long-term care homes. However, those who received a nonphysician-provided palliative home care visit before death represented only half of the decedents who were likely at the end of life. While we expected the proportion of decedents who received palliative home care to be lower among those with longer estimated life expectancies, we found a considerable proportion of individuals in their last 3 to 6 months or 6 to 12 months of life also did not receive any home-based palliative care. Across individuals who were most likely to benefit from palliative care, one of the main contributing factors to whether a home care client received a home visit from either a physician or nonphysician home care provider in their last 6 months of life was a clinician-identified prognosis of having fewer than 6 months to live, whereby individuals who received a home visit were more likely to have had a clinician-identified terminal prognosis than those who did not receive services.

Clinical Identification and Palliative Care

In other words, the authors are saying that home care clients who were not given a terminal prognosis by a clinician were much less likely to receive any home visits. They conclude from this that: “This may be an indication that the reduced life expectancies of many older adults — which can be informed using a tool such as RESPECT — are not fully recognized.”

This is rather downplaying these outcomes, especially since it is well recognized that palliative care needs to be provided at least three to four months before death to achieve maximum benefit. Not only that, but the article continues:

Our finding that only half of the individuals with an estimated survival of fewer than 3 months received any palliative home care suggests there are potentially unmet palliative care needs among community-dwelling older adults in Ontario. Furthermore, those who did not receive palliative home care were more likely to have had an inpatient admission, perhaps suggesting a lack of access to home-based support.

The authors conclude overall that the clinical identification of older adults who may be in their last 6 months of life would be extremely valuable in achieving access to home palliative care.

They go beyond recommending RESPECT in pointing to other existing challenges to the provision of palliative care in the community, i.e., the lack of public and professional awareness of the benefits of palliative care; lack of service infrastructure; human resource constraints, including lack of primary care providers; lack of knowledge and skills in palliative care areas (e.g., assessment and management of pain and symptoms, care coordination, and communication). The continuation of these challenges is rather discouraging, given general improvements in palliative care and the myriad treatments available for those fortunate enough to access palliative care.

Conclusion: Depriving People of Opportunities to Improve Quality of Life in Dying

The article concludes:

Consequently, many are not supported to die in the community, suggesting that their end-of-life care experiences may be misaligned with their preferences. This highlights the value of prognostic models such as RESPECT to support earlier identification of palliative care needs and inform care planning for individuals in their final years of life.

‘Misaligned with their preferences’ is a diplomatically worded way of saying that we are depriving many people at end-of-life of opportunities to improve their quality of life in dying, so to speak, a quality that all of us want for our own loved ones. The necessity of being more aware of these matters and in doing something about them is incumbent on all who want to promote ‘the culture of life,’ following Pope John Paul’s call to not focus so much on dying, but to ‘Live life to the end!’

Reference
Estimated mortality risk and use of palliative care services among home care clients during the last 6 months of life: a retrospective cohort study | CMAJ February 26, 2024

Pope Francis’ Intentions for March: FOR THE NEW MARTYRS

We pray that those who risk their lives for the Gospel in various parts of the world inflame the Church with their courage and missionary enthusiasm.

Moira and Bambi