Primary palliative care is palliative care practiced by primary health care workers, who are the principal providers of integrated health care for people in local communities throughout their life. It includes early identification and triggering of palliative care as part of integrated and holistic chronic disease management, collaborating with specialist palliative care services where they exist, and strengthening underlying professional capabilities in primary care.
The overall value and rationale for developing palliative care in primary care and important policy developments
Yearly, around 60 million people experience serious health-related suffering (SHS) (2). Suffering is health-related when it cannot be relieved without professional intervention and when it compromises physical, social, spiritual, and/or emotional functioning (2). Projections indicate that this trend will continue to 2060—affecting largely low- and middle-income countries (LMICs), especially due to cancer, cerebrovascular disease, lunge disease, and dementia (3).
The groundbreaking resolution on palliative care “Strengthening of palliative care as a component of comprehensive care throughout the life course” (WHA67.19) was unanimously approved by all member states at the World Health Assembly in 2014 (4); it emphasizes the urgent need to include palliation across the continuum of care, especially at the primary care level (4). In 2018, the Member States reaffirmed their commitment to strengthening primary health care and explicitly included palliative care (5). In 2019, the political declaration on Universal Health Coverage (UHC) recognized palliative care as an integral part of the health service (6), which means without palliative care there is no UHC. Palliative care became part of Essential Universal Coverage Packages (7). Palliative care is not a luxury or a privilege, but it is a basic right for all—as stated by the Human Rights Council (8)—and an ethical duty for health care systems (4).
Palliative Care has developed and grown in most countries as a specialty, although there are some notable exceptions such as Panama, but there will never be enough specialist palliative care for all, and in fact it is not needed (9). Specialist professionals are necessary for complex situations and support, but generalists can ably cope with 75% of patients, and are moreover able to intervene earlier in the illness trajectory (9). Most health-related suffering can be prevented and relieved by primary health care workers, who are the principal providers of integrated health care for people in local communities throughout their life especially in LMICs (2)…
Value of primary palliative care to health systems, patients and to public health
Evidence increasingly shows micro and macroeconomic benefits of the integration of palliative care in improving quality and sometimes even length of life while decreasing costs (14). During the last year of life due to medical costs, hospitalization and admissions to intense care units as well sometimes futile treatments, high costs are generated for the health care system (15–18), but also for the patients and their family (19).
Literature reviews have demonstrated the cost-effectiveness of palliative care (20,21). By integrating palliative care, the health care services can profit by reducing overcrowding services and the cost for the health care system, especially in low-resource settings (22). Cost savings are due to reducing repeat hospital admission through improved pain and symptom control as well as reduction of aggressive and futile treatments. Out-of-pocket cost at the end of life represents an important source of health expenditures and impoverishment, especially in LMICs (23) due to direct and indirect costs. This can lead to a medical poverty trap (Figure 1), which obviates the Sustainable Development Goals (SDG) to reduce poverty and prevent financial hardship…
The assessment of the economic value of palliative care in primary care, the difficulties entailed and what may be needed to overcome these challenges and effect service developments
A recent international narrative review of 43 reviews about the evidence of the economic value of end-of-life and palliative care interventions assessed the evidence across various settings (31). It found that most evidence on cost-effectiveness relates to home-based settings and that it offers substantial savings to the health systems by reducing aggressive medicalization at the end of life and improved patient and caregiver outcomes. The evidence across other settings was inconsistent. Interventions in primary care such as advance care planning, and day-care tended to occur earlier in the course of the illness, thus information on timing in relation to death would be useful to more fully understand resource implications. This review also called for quasi-experimental designs as randomized controlled trial are rarely feasible in this area. The MORECare Statement on good research practice generated by a synthesis of transparent expert consultations and systematic reviews in increasingly cited concerning palliative care intervention (32). On the clinical side, it is important to study if generalists can deliver interventions as well as specialists. This is important as most studies of integrating palliative care with oncology (14) or other medical specialties such as cardiology have been with specialist palliative care. A recent study integrating oncology with primary care through routinizing advance care planning shows that such interventions are feasible and acceptable with patients (33)…
Call for action and steps to develop high-impact low-cost evidence-based palliative care for all in primary care
Bottles
We have an ethical and moral duty to respond to the suffering of millions of people who could benefit from palliative care. Policies are in place internationally and we already know how to alleviate much suffering due to all serious diseases. But implementation is still patchy (37). About 14% of people who need it currently receive palliative care (38), which leaves around 50 million living and dying with unrelieved suffering, the majority, but by no means all of them in LMICs. This neglect of access to palliative care and pain relief constitutes cruel, inhuman treatment and punishment (39).
Countries should review the evidence supporting micro- and macro-economic benefits of palliative care approach in primary care and take the steps to guarantee access to all components in the Essential Package for Palliative Care to everyone and everywhere in the country. These steps include advocacy for national policies, strengthening of palliative care integration in the national health care system, education for providers and accessible and affordable medications in every country. This would result in cost savings to households and the health system, and reduce inequalities and improve the quality of care.
A Toolkit, generated by international leaders from many countries, for the development of palliative care in primary care is available in several language (12,40). This could be used to help drive appropriate policy, educational, service development, and medication availability developments in different regions and countries…
Abridged article; originally published by the Annals of Palliative Medicine. Visit the APM Journal here to access the full report.
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