Palliative care from diagnosis to death

What is the evidence for early palliative care?

Randomised controlled trials and other studies show multiple benefits from early palliative care. A landmark randomised trial comparing standard care with outpatient specialist palliative care integrated with oncology for patients with advanced or metastatic disease improved quality of life and, for some people, longevity.5 Further recent trials and a systematic review report that early systematic provision of palliative care by many clinicians, not just by palliative care specialists, can improve quality of life of people with cancer and other advanced life limiting conditions.6 7 8 It can also help avoid burdensome interventions of low benefit.9 Studies of older people in Australia and people with chronic disease in Canada showed significant reductions in hospital admissions.10 11 12

Patients have been shown to have palliative care needs from diagnosis.13 Although trials do not explain which aspects of palliative care are the most important, helping people to make choices aligned with their priorities seems to be the key.14

Below we set out a rationale for early palliative care based on the three typical trajectories of functional decline towards the end of life (rapid, intermittent, and gradual)15 16 and suggest how it can be incorporated into disease specific care.

Rapid functional decline

In people with advanced cancer, social functioning typically declines in parallel with physical decline, whereas psychological and spiritual wellbeing often fall together at four key times: around diagnosis, at discharge after initial treatment, as the illness progresses, and in the terminal phase (fig 1⇓). Patients and family members report that the time around diagnosis is one of the most traumatic, psychologically and existentially, with further emotional turmoil as the patient gets more ill.17

Fig 1 Wellbeing trajectories in patients with conditions such as cancer causing rapid functional decline

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All people whose cancer may be life limiting, but not necessarily untreatable, should be considered for palliative care from diagnosis. They can benefit from holistic care and support as well as planning care even when they may be relatively well physically. Patients report finding it supportive for professionals to simply acknowledge that this initial time can be very challenging. Some also value being told about the likely course of events for people with their condition. Waiting for physical decline misses the opportunity to provide well coordinated palliative care integrated with other treatments. Triggers for a review of palliative care needs include discharge from hospital after treatment, poorly controlled symptoms, falling performance, and other clinical evidence of disease progression

Intermittent decline

In people with life limiting, long term conditions or multiple illnesses, the dynamic “four dimensional” pattern of needs is different from that for most progressive cancers. Social and psychological decline both tend to track the physical decline, while spiritual distress fluctuates more and is modulated by other influences, including the person’s capacity to remain resilient (fig 2⇓).16 People may die suddenly during an exacerbation or when still functioning relatively well, so death is often perceived as unexpected, although it has actually been a predictable risk for some years.18

Fig 2 Wellbeing trajectories in patients with intermittent decline (typically organ failure or multimorbidity)

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During the increasingly frequent exacerbations of conditions such as heart failure, liver failure, or chronic obstructive pulmonary disease, patients and their carers are anxious, need information, and often have social problems. Support for these needs might be more effective and likely to reduce hospital admissions than interventions focusing on disease management or physical wellbeing, especially as multimorbidity is the norm in these conditions. Planning for exacerbations should include dealing with multidimensional needs and communicating current plans and patient wishes regularly and routinely to out-of-hours care providers and hospitals. This facilitates appropriate management during and after such crises.19

Gradual decline

People who have frailty, dementia, or a progressive neurological disease, including those with long term disability after a severe stroke, typically experience a gradual physical decline from a limited baseline and a diminishing social world. 20 Psychological and existential wellbeing sometimes fall in response to changes in social circumstances or an acute physical illness but a decrease in social, psychological, or existential wellbeing can herald global physical decline or death (fig 3⇓). Some older people reach a tipping point when they feel unable to live usefully or with dignity and experience increasing psychological and existential distress before dying.21

Fig 3 Wellbeing trajectories in patients with gradual decline (typically frailty or cognitive decline)

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Actions to promote optimum physical health should be combined with help to engage with social support and care that let frail older people maintain a sense of self and purpose even in the face of increasing dependence. Allowing older people to raise and discuss their greatest fears—of losing independence, dementia, or being a burden to others—is person centred early palliative care. Anticipating and planning for deteriorating health in older age can reduce distress while promoting a realistic understanding of normal ageing and how death occurs at the end of a long life. People with early dementia or progressive neurological conditions need holistic palliative care and support to plan ahead from the time of diagnosis.

Early palliative care for all conditions

Lack of timely identification of people who may benefit is the greatest barrier to early palliative care. In the same way that we screen for cardiovascular risk factors or for diabetes, we should routinely and systematically consider whether our patients might benefit from early palliative care. Signs of decline in general health or specific conditions can be combined with triggers such as unplanned admissions, poorly controlled symptoms, or increasing need for carer support. Screening can happen at treatment reviews, at hospital admission or discharge, or at annual medical examinations in older people. Various identification tools—such as the Supportive and Palliative Care Indicator Tool, Necesidades Paliativas, and Gold Standards Framework guide—are available and increasingly popular internationally.22 23 Action before the last weeks or days of life means accepting prognostic uncertainty instead of relying on mortality prediction tools that do not work for individuals.1 24