Policy context

By 2036, 2.6 million people in the UK are projected to be over 85 years old. This
age group will account for over 50% of all deaths. Older people living with frailty
and Multiple Long-Term Conditions (MLTC) will become the main recipients of
palliative care, yet there is limited evidence about their specific needs.¹

There is inequity in access to palliative care in older age. Those without families
are particularly vulnerable.²

There is a legal, moral and clinical imperative for palliative care services to
support people with Frailty and MLTC as they near the end of their lives.
Rethinking community care must include revisioning palliative care to support
those living longer.³

Integrated Care Boards will be failing in their duty unless
they listen to and understand the complex care needs of older people with
progressive MLTC.
Reconnecting Living and Dying requires upstreaming and aligning palliative
care provision to local communities.⁴

Palliative care is often seen as focusing on the final stages of a terminal disease, determined by time until death. Older people, living and dying over time, face a double bind in accessing palliative care. Neither they, nor welfare services, view older people as appropriate for referral, and opportunities are missed to support living and dying as well as possible. Whilst older people may live with vulnerability, they are also resilient and capable, and this must be taken into consideration. Identifying the palliative care needs that matter most to older people with frailty/ MLTC requires the recognition of
their strengths and concerns, as well as their physical needs, across a continuum of living and dying.

These include:

Supporting end of life provision for this growing and underserved population necessitates a shift to tailored multidimensional tools and community focused integrated care services.⁵ In other words: a person-centred approach.

Frailty is age-related and describes the gradual loss of inbuilt physiological reserves that leads to sudden, potentially fatal health deteriorations following seemingly small
events, such as a minor infection.⁶ It is a longterm condition and closely linked with
multimorbidity known as Multiple Long-Term Conditions (MLTC). MLTC refers to the presence of two or more long-term health conditions and is associated with increased mortality, lower quality of life, and greater use of healthcare services, including unplanned hospital admissions.

Older people living with frailty and/or MLTC who are coming towards the end of their lives may have many weeks, months or even years to live. There is a requirement for easy and consistent access to a variety of non-specialist personalised palliative care delivered by primary, community, acute and urgent care services, as well as specialists in palliative care.

A targeted response to care concerns is required based on biological rather than
chronological and stereotypical responses. Whilst the NHS has set Ambitions for Palliative
and End of Life Care, 2021-2026 which includes a framework of best practice developed by the National Palliative and End of Life Care Partnership, they are currently not resourced to deliver it. Having multiple care professionals delivering poorly coordinated services leads to mistakes and confusion, with poor outcomes.

There needs to be more alignment between policy and vision so that funding, regulation, workforce and performance policies match the intention of changing the focus of the health and care system towards primary and community health and care services.

My whole mind is set on getting decent carers,
get that out of the way and I don’t think I’d have a worry in the world.

University of Surrey’s, PALL UP study has been listening to the voices of older people
with frailty/ MLTC living in the community, their families, and carers, to understand
needs in the last phase of life, and how services and systems can change to meet
them. By listening to the clients’ needs policy makers will be better placed to
develop more effective services to support people with frailty/ MLTC to live the fullest
lives possible in their final years. Joining up services is essential, involving the
‘right’ people, which often includes family, who in turn may require support. Building a
triangle of care for the older person enables them to express their individual choices,
incorporate the views of the people important to them, and service providers.

The experiences of older people with frailty/MLTC nearing the end of their lives are
often poor, characterised by overtreatment in an attempt to prolong life, alongside too little palliative care. There is a fear that moving to palliative care means nothing will happen, yet the transition should be the antithesis of this.

People often fall between services focused on living independently or dying imminently and end up feeling ‘done to’ rather than ‘cared about’, with little consideration given to their desires, capabilities, and strengths.

Palliative care should support people to be as comfortable as possible while maximising the quality of their remaining life when illness is incurable. If we use need rather than expected time to death as a basis for identifying palliative care, many more would fit within current criteria for referral to specialist palliative care services.

Patients’ preferences are ultimately the key to improving overall outcomes and quality of life.

Indeed, the idea of time-based approaches – referring older people to palliative care in the last few weeks of life – is highly questionable. Instead, the focus should be on a holistic assessment of needs, met with tailored care, when someone has been identified as having complex care needs.

Relationships and connectivity sit at the heart of this person-centred approach to care: recognising and understanding each person’s physical, psychological, social, spiritual, and practical needs and concerns, encompassing both living and dying. Sadly, the voices of older people are often overlooked, such as in consenting to a particular service or treatment.

Older people must be seen as part of the solution, not the problem. Having choices and independence is important, and the progressive loss of independence causes frustration and fear.

• Palliative care for older people with progressive frailty/ MLTC needs to be remodelled, moved upstream, and transformed into a service for all. There is no alternative, the number of people aged 85 and over in the UK is projected to rise from an estimated 1.6 million in 2021 (2.5% of the total population) to 2.6 million by 2036 (3.5%), this upward trend will continue⁹.
• Different ways of working, different partnerships and a sharing of power are required to enable a focus more on a holistic assessment of needs rather than a focus on diagnosis and prognosis.
• Moving palliative care upstream requires investment in upskilling the silent workforces of paid domiciliary and unpaid family carers.

This includes training to:

• A single point of access for all care needs is essential. Clinical services often prioritise assessment and response to physical needs. Yet social and practical needs are often prioritised by older people.
• A public education programme is required which focuses on frailty awareness, individualised care, understanding the ageing journey and palliative care. As a society we have a civil and moral responsibility to care for the older generation, but families and friends often feel ill-equipped to support.
• Healthy Ageing must include Healthy Dying. We need to find ways to break the taboo and support honest conversations about end of life and dying to ensure life is lived to the highest quality possible.
• A Commissioner for Older People and Ageing should be established as an independent champion for older people in England. Supporting this Call to Action would facilitate long-term planning, address inequalities, and help government deal with the challenges of an ageing population.

Hospitals are the most costly way to manage health and yet they have become the first resort for many patients. There are more imaginative solutions than simply building more ‘sickness factories’.

Caroline Nicholson is Professor of Palliative Care and Ageing in the School of Health and Medical Sciences at the University of Surrey. Contact Professor Nicholson at c.nicholson@surrey.ac.uk if you would like to learn more about her research, invite her to speak at your event, or collaborate with the Living and Dying Well Team¹¹