CCBI News: Caring for People; “For the Love of God”
December 15, 2023 Dear Friends of CCBI, Pope Francis – Caring for People Addressing an…
CCBI News – Costs of Palliative Care: Hospital Acute and Palliative Units; Rural v Urban: Home Care
May 5, 2023
Dear Friends of CCBI,
Costs of Palliative Care
I was speaking recently in a parish about euthanasia and palliative care and one of the participants talked about the desirability of quality, home-based palliative care, with which I completely agree and which CCBI promotes. He also stated that it is much cheaper than hospital or hospice care. I have been saying the same thing for a long time but bit my tongue that day since I’d been starting to think differently after doing some research into this issue but did not yet have enough evidence for comparison purposes.
The general assumption is that it is less costly to health care if palliative patients die at home as opposed to dying in hospital or any other setting. The most important point, though, is that dying at home fits with most people’s wishes and therefore there are many advocates for this being accomplished. Also, if it does cost our healthcare system less, as CCBI and many others mostly claim, it would be a ‘win-win’ situation. After reading various articles giving another view, there is some evidence that costs in different settings might not be as dramatically different as expected. This factor needs to be accurately stated when people want or are being encouraged to turn to palliative care, especially home-based care, at end-of-life. While repeating that costs are not the most important factor, it is important that people be informed of hidden costs they had not considered, and which may be burdensome to assume. So, how are costs of dying at home versus dying in a hospital, hospice or other setting estimated? Can all Canadians afford such care for their loved ones? There are, as noted, varying views and here are some initial findings from our ongoing research.
Costs Differences Between Hospital Acute Care and Palliative Units
A Fact Sheet published by the Canadian Hospice Palliative Care Association states that the cost of dying in Canada ranges from as low as $10,000, “…for a sudden death, to between $30,000 and $40,000 for someone with a terminal disease such as cancer or chronic obstructive pulmonary disease.” If patients are moved to a palliative unit when acute care is no longer needed, it is estimated that the health care system saves approximately $7,000 to $8,000 per patient. The Fact Sheet noted that “Hospital-based palliative care reduces the cost of end-of-life care by 50% or more, primarily by reducing the number of ICU admissions, diagnostic testing, interventional procedures and overall hospital length of stay.”
While this sounds reasonable, figures show that the majority of people still die in acute care, sometimes with their last few days spent in a palliative unit or perhaps hospice. A recent report, however, states that there has been a decline in hospital end-of-life care, at least in Ontario. According to a report from Health Quality Ontario, “…the proportion who die in hospital has decreased in recent years. 52.2% of deaths in Ontario occurred in hospital in 2017/18, compared to 58.2% in 2010/11. Over the same period, the proportion of deaths that occurred in the community increased to 29.9% from 24.2%. Deaths in long-term care homes remained essentially unchanged at 17.9%, compared to 17.6% seven years earlier.” On a social justice note, the report also states, “People who live in neighbourhoods with lower incomes or with more immigrants are more likely to die in hospital. 60.5% of those who lived in the third of neighbourhoods with the highest proportion of immigrants died in hospital, compared to 49.9% of those who lived in the third of neighbourhoods with the fewest immigrants.” There is work to be done.
Another article published in Health and Social Care noted that: “The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of costs borne by different stakeholders.”
To emphasize: Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients.
This type of research, which needs to be further confirmed and compared with other findings, points to the need for those desiring home-based palliative care and those proposing it to be more aware of costs we do not always consider. We need to be more accurate.
Rural v Urban Differences
Some studies indicate that rural families face higher costs and there is a concern that some patients might be compelled to choose euthanasia if costs are exorbitant or if families cannot be given necessary treatment because of their location. A question from a friend of CCBI who told me about unexpected costs in having to pay for certain pain medications for her husband when he was in hospice palliative care prompted me to ask a major hospice organization about this. The reply directed me to its website (which I had already consulted) and I still could not find an answer. I asked several senior palliative care professionals and was told that there are many responses to this question about costs, depending on provincial health insurance plans, etc. This sort of information needs to be clear and available to the public. We deserve to know what to expect, particularly in offering home-based care to loved ones. Look for more comment on this in the near future!
An article in Palliative Medicine affirms that, “Significant gaps in the evidence base on costs in rural communities in Canada and elsewhere are reported in the literature, particularly regarding costs to families. However, it remains unclear whether the costs related to all resources used by palliative care patients in rural areas differ to those resources used in urban areas.” (Emphasis added). While costs may be similar in urban and rural settings, the distribution of costs is different, with more of the burden borne by rural families. The authors found that, “The mean total cost per patient was CAD $26,652 in urban areas, while it was CAD $31,018 in rural areas. The family assumed 20.8% and 21.9% of costs in the rural and urban areas, respectively. The rural families faced more costs related to prescription medication, out-of-pocket costs, and transportation while the urban families faced more costs related to formal home care.”
Added to that, rural areas often lack services available in urban settings, and the dying person is not able to be cared for at home. One rural-based nurse manager, quoted in the Health Quality Ontario article, noted: “My nurses are only able to visit end-of-life, actively dying patients in-home once a day, to set up the medications and provide teaching. Because of this, it is very much a family-centred cast to keep someone at home at end-of-life. …Same with PSWs – they could maybe go in three times a day to check in, if we’re lucky, but there is no one available overnight or for longer than absolutely necessary. So some people do end up in hospital at end-of-life because they just need more care than the family can provide at home.” This is extremely distressing for any family hoping to provide home-based care but not being able to arrange it. As always, questions of financing and equity enter the picture, not to mention the slowness of government and/or provincial health care budgets to provide the palliative care needed in rural areas.
Home Care Costs
Another study from the Canadian Hospice Palliative Care Association, quoted in the Near North Palliative Care Network, states that the cost of dying varies not only by cause but by where people die, but, overall, it states the case for home-based palliative care being less costly. It reports: “… on average it costs $36,000 to die in a chronic care facility, compared to $16,000 to die at home. Hospices provide a more home-like experience, while costing only about $439 per patient a day, compared to $850 to $1,000 in a hospital bed.” The Near North organization goes on to say that, “Care-giving costs of palliative care at a home setting can be as little as $46/day, when family members are involved, and the costs of the same care at hospice settings are never less that around $142/day.”
Clearly, reports vary and the figures in this last report would indicate there is ‘no contest’ as to which way of providing palliative care is less costly. Hidden or unacknowledged costs for families, however, need to be factored in to be sure that they will be able to provide the kind of ‘at home’ services their loved one needs. A report from Health Quality Ontario finds in a study detailing totals costs of caring for patients receiving palliative care services at home through a palliative care centre in Toronto, that “Caregivers absorbed an average of $17,500 per month in lost wages and leisure time and another $700 per month in out-of-pocket expenses for the patient and family.”
CCBI will continue to look at the costs aspect of palliative care to try to consider all the bases families will need to consider in looking after loves ones. At the same time, we know that most families will do anything they can to care for their dying relative – our sheer humanity prompts us to do so, and most families rise to the occasion: costs are not the prime consideration. We also know that government has been slow to increase benefits for those who forgo wage and salary payments in order to provide home care, and to increase the length of time for which they are available. Dying can be a slow process, and it is difficult to predict how long one must stay home from work to provide family care. Families often have to manage without enough outside support and find themselves out of pocket in buying medicines and other essentials for their loved one, while at the same time government is spending taxpayer money on special committees looking to extend MAiD procedures. There is something very wrong with its priorities!
new_fact_sheet_hpc_in_canada-summer2017-final-en.pdf (chpca.ca)
Palliative Care at the End of Life: Report Update 2019 (hqontario.ca)
Pope Francis’ Intentions for May: For church movements and groups
We pray that Church movements and groups may rediscover their mission of evangelization each day, placing their own charisms at the service of needs in the world.
Moira and Bambi