Early palliative care: what should it look like?
Different for people with different conditions
Murray SA1, Kendall M1, Mitchell G2, Moine S3, Amblàs-Novellas J4, and Boyd K1
1Primary Palliative Care Research Group, The Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Medical School, Teviot Place, Edinburgh EH8 9AG
2General Practice, Faculty of Medicine, University of Queensland, Brisbane St Lucia, QLD 4072, Australia
3Multi-professional Group Practice “The Vines of the Abbey”, 60130 Saint Just en Chaussée, France; Health Education and Practices Laboratory, University Paris 13; SimUSanté, Amiens University Hospital
4 Geriatric and Palliative Care Department, Hospital Universitari de la Santa Creu/Hospital Universitari de Vic; Chair of Palliative Care, University of Vic, Barcelona, Spain
Corresponding author: Scott A Murray
Word count: 2137
Introduction
Palliative care is still frequently thought of as care in the terminal stage of cancer. It is often delayed until the last weeks or days of life once the illness is advanced and disease-focused treatments are no longer effective. People with cancer are still more likely to receive palliative care than other patients.(1) ‘Late’ palliative care is a missed opportunity to do better for patients, families and health services. In high-income countries, up to 80% of people who die could benefit from palliative care offered much earlier in their illness.(2)
’Early’ palliative care has been a World Health Organisation policy resolution since 2014. Palliative care should be considered from diagnosis onwards and integrated as a component of comprehensive care in all care settings for people with any condition that means they may die at some point in the foreseeable future.(3) A clear definition of ‘early’ palliative care is important.
Another driver for ‘early’ palliative care is evidence, including randomised controlled trials (RCTs) showing multiple benefits from ‘early’ palliative care, making it imperative to offer this as a choice to patients and families. A landmark trial of outpatient, specialist palliative care integrated with oncology for patients with advanced or metastatic disease improved quality of life and, for some people, longevity. The control group received usual cancer care where referral to palliative care may occur later.(4) Further recent RCTs and a systematic review report that early systematic provision of palliative care by many clinicians in inpatient or outpatient settings, not just by palliative care specialists, can improve quality of life of people with cancer and other advanced life-limiting conditions.(5-7) It helps avoid burdensome interventions and service use of low benefit. Studies of older people in Australia and people with chronic disease in Canada showed significant reductions in hospitalisation.(8-10) Palliative care needs have been identified as significant from diagnosis.(11) Trials do not explain which aspects of palliative care are the most important ingredient, but helping people to make choices aligned with what is important for them seems to be key.(12)
We set out in this paper a rationale for ‘early’ palliative care and when it should be triggered, based on the three typical trajectories of functional decline towards the end of life: rapid, intermittent and gradual which we have previously visualised in figure 1.(13) Our extensive studies of people’s experiences enable us now to describe not just physical but psychological, social and spiritual domains in each trajectory –see contributors and sources section below.(14) We suggest how palliative care might be integrated routinely with disease modifying care to improve patient and family carer experience and outcomes. ‘Early’ palliative care initiatives should encourage all clinicians working in hospitals and in the community to embrace the principles of palliative care in their current practice so that they can address the multidimensional needs of people with deteriorating health more effectively. Palliative care specialists can provide support, training, additional advice and direct involvement in more complicated or unstable situations.(15)
‘Early’ palliative care for people with rapid functional decline (typically cancer)
In people with advanced lung, brain and bowel 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. Patients, family members and bereaved relatives often report the time around diagnosis as being one of the most traumatic psychologically and existentially, followed by further emotional turmoil as the patient gets more ill.(16) The dynamic multidimensional distress of rapidly progressive cancer is shown in figure 2.
Implications All people whose cancer may be life-limiting, but not necessarily untreatable, should be considered for ‘early’ palliative care from diagnosis. They can start to benefit from holistic care and support, and care planning even when they may be relatively well physically. Patients report finding it supportive for professionals to simply acknowledge and recognise 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 for the general practitioner, physician, surgeon or oncologist and their teams to provide well-coordinated palliative care integrated with other treatments. From the diagnosis of cancer, further triggers and key trajectory events should prompt a review of palliative care needs; discharge from hospital after treatment, poorly controlled symptoms, falling performance status, or other evidence of disease progression.
‘Early’ palliative care for people with intermittent decline (typically organ failure and multimorbidity)
In people with life-limiting, long-term conditions or multiple illnesses, the dynamic “four dimensional” pattern of needs is different from the one 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.(14) 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.(17) The intermittent, multidimensional crises with partial recovery of progressive organ failure and multimorbidity is shown in figure 3.
Implications During the increasingly frequent episodes of acute decompensation due to heart failure, or liver failure or exacerbations of chronic obstructive pulmonary disease, patients and their carers are anxious, need information and often have social problems. Interventions that address these different dimensions might be more effective and likely to reduce hospital admissions than interventions focussing only 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.(18)
‘Early’ palliative care for people with gradual decline (typically frailty or progressive neurological or cognitive decline)
People who have frailty, dementia or a progressive neurological disease, including people with long-term disability after a severe stroke, typically experience a gradual physical decline from a limited baseline, and a diminishing social world.(19) 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 dying. Some older people reach a tipping point where they feel unable to live usefully or with dignity and experience increasing psychological and existential distress before dying.(20) The inexorable, slow decline and multiple losses associated with frailty, dementia and neurological conditions is shown in figure 4.
Implications Actions to promote optimum physical health, should be combined with help to engage with social support and care that lets 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 tends to 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 diagnosis.
Delivering ‘early’ palliative care across all conditions: early identification, good conversations, and planning ahead
Early identification is needed across all conditions
Lack of timely identification of people who may benefit is the greatest barrier to ‘early’ palliative care. In the same way that professionals screen for cardiovascular risk factors or for diabetes, we should routinely and systematically consider if our patients might benefit from ‘early’ palliative care. Illness related signs of general health decline or related to specific conditions can be combined with service use triggers liked unplanned admissions, poorly controlled symptoms, or increasing carer support needs. Screening can happen at treatment reviews, at hospital admission or discharge or at annual medical examinations in older people. A number of identification tools such as the SPICT, NECPAL, and GSF guide are available and increasingly popular internationally.(21, 22) All these tools help clinicians identify people who might be at risk of deteriorating and dying from one or more advanced, progressive conditions. It is vital that identification for ‘early’ palliative care occurs long before the last weeks or days of life. That means accepting prognostic uncertainty instead of relying on mortality prediction tools which do not work for individuals.(1, 23) Patient recruitment in the first Temel RCT was at diagnosis of advanced cancer. A palliative care approach can start even earlier, from soon after diagnosis.(23)
Good conversations about ‘what matters’ and addressing the stigma of “palliative care”
Early conversations suggesting that it is timely and helpful to start talking about what might happen in the future and available treatment and care options should be introduced sensitively.(12) Explaining the inherent uncertainties of life-limiting illness is different from breaking bad news and is an ongoing discussion over time about what might happen ‘if’ and what could help.(24) There are many well-validated guides to help clinicians to explore people’s understanding, share individualised information, respond to emotions and acknowledge loss so that care is tailored to each person’s needs and priorities. The content and the context of such conversations should be relevant to where the person is on his/her trajectory and involve people close to them.(12, 25-27) (See Box 1 for practical suggestions)
Many clinicians find it challenging to raise “palliative care” with patients as it is so associated with imminent death. In Canada and the UK some palliative medicine physicians use the term “supportive care” to promote access.(28) Many patients who have accessed palliative care early have stated that a different name was necessary in the outpatient setting.(29) Practical aspects of doing this have recently been reviewed.(30) A natural experiment of using the term “anticipatory care” throughout Scotland found that it enabled earlier conversations without mentioning “palliative care”. Planning for possible deterioration made it much easier to discuss, anticipate and plan for likely events in the illness trajectory including dying at some stage. More patients subsequently died having received planned holistic care.(18)
Early integration with ongoing disease management and planning ahead
This is the only way that ‘early’ palliative care can be widely available and acceptable to most people. Open dialogue and planning should occur in the community, care homes and hospital wards, so that everyone who needs it can benefit from palliative care in an equitable manner.(31) Communication between these settings is vital. Hospital specialists, specialists in palliative care, GPs, community nurses, patients and carers, providers and commissioners of long-term conditions and palliative care must all be involved. Several initiatives have already implemented these principles in different health systems throughout Europe, to various extents.(32) A WHO web platform dedicated to Integrated People Centred Palliative Care (www.integratedcare4people.org/communities/integrated-people-centred-palliative-care/) has been launched to share good practice, experiences and lessons learned about ‘early’ palliative care.
Palliative care, considering each dimension of need, may moderate the current ‘‘technological imperative" and promote kinder and more ‘realistic’ medicine and “Choosing Wisely” (www.choosingwisely.org) to prevent unnecessary treatment.(33) An open conversation mapping out the likely future course of the illness and likely dimensions of needs with the patient and family can allow care focusing on quality of life and symptom management, to be started early. Initiatives to promote a public discourse about death and dying are being taken forward in Scotland (www.goodlifedeathgrief.org.uk), England (www.dyingmatters.org), and Ireland (http://hospicefoundation.ie/programmes/public-awareness).This includes telling people how ‘early’ palliative care can help them live well with life-limiting illness from diagnosis or if they have declining health from several causes.
Conclusion
The key to ‘early’ palliative care is to be alert for the opportunity to introduce it, to understand how the illness will probably play out over time, to listen to what the person thinks is important and to offer ongoing support. Understanding typical patterns of decline and distress enables professionals, patients and their carers to share a realistic understanding and include ‘early’ palliative care when it can prevent as well as treat distress. Furthermore, patients often attempt to gain control over their illness by acquiring knowledge about how it is likely to progress. Explanation about when practical, emotional, and existential issues might occur, and the help available, helps empower them and provides real hope. ‘Early’ palliative care is about doing more for the person, not less.
In Hippocrates’ day, the physician who could foretell the course of the illness was most highly esteemed, even if he could not alter it.(34) In life-limiting illness we must trigger palliative care early by sensitively listening and sharing what the future may hold. Care should address what matters to the person and their future concerns and does not necessarily involve a focus on death or place of death. Indeed it might be best not to call it “palliative care”, but just good patient-centred care and planning, to which we should all aspire.
Key messages· ‘Early’ palliative care improves the quality of life by focusing on living well with deteriorating health, promoting ‘realistic’ medicine and avoiding burdensome treatments and care of little benefit
· Triggers for starting palliative care and guidance about which components are likely to help people with different conditions and when can be based on an understanding of typical, multidimensional illness trajectories
· A core competency of all health professionals should be early identification of people who might benefit from holistic care and care planning
CONTRIBUTORS AND SOURCES: We have drawn ona synthesisof 12 studies and over 1200 in-depth serial interviewswith people who haddiverse, life-limiting conditionsand their carersfrom studies carried out in the last 15 years by the Primary Palliative Care Research Group in Edinburgh. (See box 2) This has allowed us to gain a nuanced and dynamic understanding of the changing experiences and needs of patients. By innovatively displaying physical, social, psychological and spiritual needs graphically along a time line, we created images to help us describe and display patterns of wellbeing and distress experienced by people with advanced cancer, organ failure and multimorbidity and frailty. We did not attempt to measure levels of distress using formal rating scales as these were qualitative studies of patient perceptions. We have also reviewed broader patient-experience research internationally, and interventions in many countries to provide ‘early’ palliative or supportive care throughout Europe, Australia and America to inform this analysis. The authors comprise a social scientist, general practitioners from the UK, France and Australia, a geriatrician and a palliative medicine specialist.