The COVID-19 global pandemic has led to many paradigm shifts in the delivery of healthcare.
Virtual care is probably the most visible and stark change. Overnight, Canadian healthcare transformed itself from a heavy reliance on face-to-face encounters to a majority of interactions occurring via secure videoconferencing or telephone support, accelerating a change that had been years, if not decades, in the making. Now, most feel virtual care is here to stay.
But there is another change requiring a paradigm shift that has not yet happened: how Ontario funds hospice care.
Palliative and hospice care are often used synonymously and interchangeably. For clarity, palliative care is the umbrella term that refers to the care provided to patients with a life-threatening illness, preferably from the time of diagnosis (when resources permit) until end of life. Hospice care is synonymous with end-of-life care. This typically occurs in either a residential hospice or a patient’s home. Some residential hospices have community outreach programs that provide home hospice care with the residential hospice available as a backstop.
Residential hospices are built through philanthropic giving and fundraising. While the government partially funds the clinical operation of hospices, it is estimated that more than 50 per cent of the overall operating expenses must be raised year after year to make up for shortfalls. Hospices also rely heavily on volunteers, who are the lifeblood of hospices. From direct patient care to housekeeping, from meal preparation to night vigils, hospices simply do not function without their armies of care, their “caremongers.”
Hospices survive due to the generosity of their communities and the unfailing commitment of staff. The COVID-19 pandemic has exposed many shortcomings in our healthcare system and our funding of hospices is no exception. Donations have slowed to a trickle and it is unclear when fundraising activities will be able to resume. Even then, it is uncertain if fundraising will continue at pre-COVID levels given record unemployment and significant losses in the markets. Many volunteers are no longer able to support hospices due to the risk posed by their age or medical conditions. While some volunteers may be able to return in time, there is a very real possibility that most hospices will need to adjust to life without the irreplaceable volunteers.
In no other area of medicine would we tolerate this level of uncertainty and lack of support. Imagine a patient being told their chemotherapy or surgery was delayed or unavailable due to a slow year in fundraising.
While many hospitals run charitable foundations or charge for parking to supplement new capital expenditures, such as an MRI scanner or robotic surgical assistive device, day-to-day costs are fully funded through global budgets. It is estimated that residential hospices must fundraise almost $150/patient/night to make ends meet. Hospices pride themselves on providing their services “free of charge” to patients and their families. Now imagine the added costs of PPE required in the “new normal” of the pre-vaccine COVID reality that has decimated hospices financially and diminished their human resource base.
Hospices often sweat at year end, hoping that donations and philanthropy will make up for the shortfalls in government funding. Due to increased staffing and PPE costs combined with decreased donations and fundraising activities, the expected revenue losses for hospices in 2020 and going forward is eye-watering.
This underfunding of hospices flies in the face of our current economic understanding of the benefits of palliative care. In May 2020, Palliative Care Australia and KPMG released a report highlighting the need to not only overhaul the palliative care system in Australia but also make significant investments to realize cost savings.
According to the report: “All Australians who need palliative care are simply not having access to services when they need to, particularly at home and in community settings. As we prepare for an ageing population and other unexpected stresses to our health care system, like COVID-19, we must look seriously at reforming our system to ensure it can meet people’s needs into the future. Palliative care is about quality of life, living well with a palliative diagnosis and about dying well. Through an additional annual investment of $365 million on national reform, we can save up to $464 million in other health system costs while making the system work best for those experiencing it. We have to spend money to save money and that’s backed by leading economists” (emphasis mine).
These findings can be generalized for the Canadian context. We need to invest money in order to save money. To their credit, HPCO’s 2020 pre-budget submission to the provincial government recommended investments but also contained many “cost-free” recommendations for improving the efficiency and quality of hospice palliative care in Ontario.
Furthermore, Dr. Sandy Buchman, the president of the Canadian Medical Association and a palliative care physician, recently presented a slide at a ChoosingWisely conference that outlined the cost of care based on location of care. Here is what it showed:
Clearly hospice care, whether at home or in a residential hospice, is more economical than providing the same care in hospitals. But we can’t do this if hospices are constantly fighting to keep their doors open and the lights on.
This pandemic threatens hospice care in Ontario. The time has come for the government to work with its partners and re-examine how we fund hospice care. We must ensure that hospice care will continue to be available to support patients and their families when they need it.