Palliative care is gradually reaching more people, but the bad news is that over-medicalisation and futile treatment is increasing more rapidly as death approaches. (1)
Too often palliative care is started too late in the illness trajectory, only when all possible curative treatment has been exhausted.
It is good news that the old concept of an abrupt change from curative to palliative care is giving way gradually to the better concept of a phased introduction of palliative care from diagnosis of a life-threatening illness.(2)
However, disease modifying and potentially curative care and unplanned care is not decreasing. Patients are getting more frequent and extensive treatment, especially in the last 3 months of life.
Ninety-five percent of patients in the UK in their last year of life receive emergency and unscheduled care.(3) Planned primary and hospital care for disease management as opposed to symptom control are also rising steeply.
Figure 1 illustrates this by showing the monthly frequency of medical service episodes that patients receive in their last year of life using linked national datasets.(1)
Who is responsible for this?
Is it patients demanding more treatments than might be wise, hoping against hope for a cure?
Do patients still think palliative care means they will die very soon rather than be helped in many ways?
Is it hospital doctors doing what they can do and know how to do, rather than should do?
Is it lack of effective care planning and communication between all settings?
Is it the decrease in continuity of care, especially out-of-hours?
Especially in low and middle income countries where curative care is not available to some patients, inappropriate and sometimes very costly care is especially wrong and inequitable. And this pattern is now increasingly seen in such countries.(4)
Whose job is it to address this high-cost low health-gain issue? Palliative care specialists receive most referrals late if at all. Can they help? Should they have a public health duty to address this issue of overzealous treatment of the population who are dying in their catchment areas?
How can all doctors, nurses, family carers and patients address this enormous issue?
Everyone must trigger this approach at a diagnosis of a life-threatening disease, when the future is uncertain, rather than delay until when the condition is definitely fatal and it is too late to prevent much suffering.
Tools are available to help anyone know when to start with individual patients.
Vitally, palliative care should not start after a “breaking bad news” conversation. It should start when the innate uncertainty of any life-threatening illness appears.(5)
Palliative care training workshops should teach how to have conversations with patients with advanced illness about the innate uncertainty the future now holds, and how to plan how to make the very best of life.
These should be a core part of undergraduate and postgraduate training for all doctors and nurses to enable them to comfortably introduce a palliative care approach when their patient develops a life-threatening illness.
Referral to specialist palliative care is not routinely required. But the principles of palliative care are vital then.
Considering the future together with the patient and carer by drawing on the now established concept of “illness trajectories” of decline can give a basis for planning for likely scenarios with patients and their carers and introduce the holistic pre-active approach that is palliative care.(6) See video below which a learning aid for clinicians in different languages.
Communication skills workshops focussing on “breaking bad news” enforce the idea that palliative care is only for those who are going to die soon.
Palliative care should start when the innate uncertainty of any life-threatening illness appears, by offering personal advance care planning from then
Scott A Murray, MBE, FRSE, Emeritus Professor of Primary Palliative Care, The University of Edinburgh, Edinburgh, UK http://www.ed.ac.uk/usher/primary-palliative-care
1 Murray SA, Amblàs J. Palliative care is increasing, but curative care is growing even faster in the last months of life. British Journal of General Practice 2021; 71 (710): 410-411. DOI: 10.3399/bjgp21X716921
2 Murray SA, Kendall M, Mitchell G, Moine S, Amblàs-Novellas J, Boyd K. Palliative care from diagnosis to death. BMJ. 2017;356.
3 Mason B, Kerssens JJ, Stoddart A, et al. Unscheduled and out-of-hours care for people in their last year of life: a retrospective cohort analysis of national datasets. BMJ Open 2020;10:e041888, doi: 10.1136/bmjopen-2020-041888
4 Kimbell B, Murray SA, Macpherson S, Boyd K. Embracing inherent uncertainty in advanced illness. BMJ. 2016;354:i3802
5 Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. Clinical Review. BMJ 2005; 330:1007-11. https://doi.org/10.1136/bmj.330.7498.1007
6 Sallnow L, Smith R, Ahmedzai SH, et al. Report of the Lancet Commission on the Value of Death: Bringing death back into life. January 31, 2022. https://doi.org/10.1016/S0140-6736(21)02314-X
This video is intended for health and care professionals interested in promoting early palliative care. It is available in English, Spanish, Italian, Portuguese and French.