Primary palliative care needs urgent attention

Growing numbers of people, both old and young, have complex chronic conditions and multimorbidity. Their disease trajectories are highly unpredictable; sudden health deteriorations, and the possibility of dying, are a constant risk for many. This presents huge challenges for primary and community healthcare services. Patients and families often turn to emergency healthcare services at times of acute crisis, which can lead to emergency admission to hospital. In the United Kingdom, up to one third of hospital inpatients are in their last year of life.1

Palliative care improves the quality of life of people with serious illnesses, or life threatening conditions, or both, by assessment and management of their physical, psychological, social, and spiritual needs. Substantial inequalities exist in provision, however, and patients with multimorbidity, non-malignant disease, or dementia are less likely to receive such care.2 Many patients who need palliative care are not included in UK general practice palliative care registers, but those with cancer are more likely to be included than those with non-malignant conditions.3

Similar concerns exist in other developed nations. In Canada, only 15-30% of people have access to publicly funded specialist palliative care services, and they often access them only in the last days or weeks of life, mainly in acute care settings. Those who do receive palliative care services in the community are 2.5 times more likely to die at home.4

In 2018, 40 years after the landmark Alma Ata declaration formally recognised primary healthcare as integral to achieving health for all,5 the World Health Organization affirmed that providing palliative care to patients, families, and communities is core to the role and identity of primary care clinicians.6 General practitioners or family physicians have the skills to deliver palliative and end-of-life care in every encounter in the community—when their working environment allows it and they are adequately supported by specialist colleagues.78

Trusted, longstanding relationships between primary care professionals and their patients create an ideal context for early identification of palliative care needs, including for those who are frail, those with multimorbidity, and those at risk of unwanted admissions to hospital. These relationships are valued by patients and families.9 Primary care, however, is under unprecedented pressure in the UK, Canada, and elsewhere. Barriers include a lack of time with patients, conflicting clinical, administrative, and managerial demands, compromised continuity of care (including out of hours), and depleted community nursing services.10

The BMJ drew attention to the pressing need to develop primary palliative care to realise the expectations of dying people 15 years ago.8 Some progress has been achieved since then with research, national policies, educational resources, frameworks for care,1112 and the European Association of Palliative Care toolkit.13 But the integration of palliative care into primary care continues to need attention, alongside the development of specialist services, including specialist outreach, which, although appropriate for many patients, is neither needed nor wanted by others.

Palliative care is needed by populations all over the world,14 and primary care has the potential to deliver this person centred care. As we approach the first high level meeting on universal health coverage at the United Nations General Assembly in September 2019, the message for policy makers and primary healthcare professionals is clear. Developing primary palliative care alongside specialist palliative care services is vital to fully realise the benefits of early identification of need. These benefits include improved coordination of care and symptom control, support for families, and less time in hospital.15

Frameworks to improve care1011 and models of palliative care integration between primary, secondary, and tertiary services already exist.16 Educational resources to support the management of patients with life threatening, complex multimorbid conditions in primary care should also be improved, in keeping with the changing needs of the population.

Future policy, and those charged with implementing it, should place greater emphasis on the role of general practitioners, family physicians, and community nurses in palliative care. They must recognise that primary care teams have a key role in the initiation and delivery of effective palliative care for patients and families and must ensure that training, support and a working environment and culture conducive to primary palliative care is provided for all.