Abstract
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As the life expectancy of the world's population improves, how people die has fundamentally changed from relatively acute deaths to an ever-increasing proportion of people dying from chronic complex diseases that have transformed into chronic progressive diseases, and diseases predominantly of aging such as cancer. People are now living for a longer period of time with their life-limiting illness (and associated symptoms) and an ever-increasing proportion of the world's population will have months or years of warning of their deaths. These consequences of improvements in life expectancy have redefined how palliative and end-of-life care should be conceptualized and the value proposition such services can offer for low-, middle-, and high-income countries.
There are manifest paradoxes as we consider end-of-life care around the globe. For example, although low- and middle-income countries have 60% of all cancer deaths (and this proportion will continue to grow rapidly as other causes of death earlier in life are managed more effectively) and 95% of deaths related to HIV, these same countries account for only 6% of opioid use globally. 2 Without access to appropriate care, the untold suffering experienced by people is almost beyond words. Immediate-release oral morphine solution safely, predictably, and affordably could relieve pain for millions of people each year who have unrelieved suffering. Avoidable suffering of patients must be considered a failure of basic healthcare provision.
Another paradox seen is in healthcare expenditure. In resource-rich countries, good end-of-life care (although not designed to) will often have the collateral benefit of producing economic savings for patients, their families, communities, and health systems. Yet, for a complex array of reasons, clinically futile therapies remain common toward the end of life, placing serious financial strain on the affordability and sustainability of health services, without benefit to patients. 3 In the face of inexorable physical decline, such therapies are not only highly expensive but also fail to focus on optimizing functional independence, symptom control, 4 and they can potentially accelerate the cycle of deconditioning, poorer symptom control and premature mortality.5,6 Given current patterns of spending in the last year of life in resource-rich countries, there urgently needs to be greater focus on ensuring real improvement on the health and well-being of the community as a result of the investments made. A reallocation of health spending at the end of life away from clinically futile treatments and toward palliative care is likely to both improve patient care and reduce unnecessary health spending.
By contrast, in resource-challenged settings, the introduction of palliative care will be an additional cost to be borne in the healthcare budget, burdening already limited resources. In such countries, spending is currently directed toward developing acute and preventative services and it is essential that acute and preventative services continue to develop. This means that in countries where relatively little is currently spent as care in the last year of life, additional resources will be required for palliative care development. If ever good palliative care becomes a significantly less expensive option than current care in the last year of life, sadly it may well reflect that spending at the end of life is out of proportion to the benefits likely to be derived from the expenditure; out of proportion to overall health expenditure and that little has been learnt from the problems seen so clearly in resource-rich countries.
It would be a mistake to represent palliative care as a “cheap option.” In high-income settings, where health spending is approaching the asymptote, presentation of palliative care as cheap, risks public opinion and associations with the discontinuation of treatment as “abandonment.” In low-income settings, growing palliative care alongside curative services will not be a cost-saving and will represent higher costs. It is therefore imperative to represent palliative care, integrated with curative services, as the most cost-effective pathway to high-quality healthcare provision.
In this issue of the Journal of Palliative Medicine, excellent work reflects on better understanding the role of palliative care in Africa: one with a Delphi process to define high-level indicators of the recognition and integration of palliative care at a national level
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; and the other reflecting on predictors of people with cancer being referred for a palliative care assessment in Uganda.
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This latter study is important because, as is seen in much of the rest of the world, there are few predictors that a person will be referred to palliative care. This lottery is not the fault of referring doctors and other health professionals. Defining who should be referred for assessment and when is the biggest challenge for which palliative care has to take ownership internationally. Dealing with this is an urgent need, for failure to do so will:
- cause continued needless suffering for patients; and - limit engagement from funders as the optimization in symptom control and functional independence that underpins the value proposition of palliative care will not be realized, and funding will fail to grow.
Smart emerging economies will focus on the investments that make the greatest use of available resources to benefit the broadest possible population—excellent, community-based palliative care linked for continuity to all parts of the heath system, including inpatient care. The emphasis will be on support and symptom control that deliver patients' physical autonomy for as long as possible, good symptom control, and support for caregivers while in the role and subsequently having relinquished the role. 9
To ensure that these goals are the focus of care provided to people with life-limiting illnesses, it will be imperative to have a much broader community conversation in every country to promote understanding that services which promote quality of life and length of life should develop concomitantly. Such conversations should be led by community leaders and academics from the humanities perhaps rather than by health professionals. Smart economies need to be investing in these conversations urgently.