Enabling patients to live fully until they die in 2024 – Rebecca Tiberini

A New Year draws a line in time and brings with it the opportunity to reflect on our lives and what matters most. As we begin 2024 many of us will make New Year’s resolutions, to pursue a personal goal, to be more active, to do something that will improve the quality of our life.

In a similar way, receiving a palliative diagnosis draws a line in time. For the patients we support and their caregivers, knowing that the end of their life is in sight, brings into focus what is most important. It also gives the opportunity to consider what adds meaning and value to each day, to live them to the full.

 

Is symptom control enough to improve quality of life for patients with life-limiting diseases and their caregivers?

Symptom control is an important aspect of palliative care which improves patients’ comfort and quality of life, however enabling people to live their life fully until they die involves more than just being comfortable.

To truly optimise quality of life for people living with life-limiting illness we need to find out what matters most to each individual and what activities add value to their life.

Working in partnership with patients to create meaningful goals and supporting them to achieve these can make the difference to a life lived to its full potential right up until the last moment.

It could be a drive to the countryside to see the sun illuminating the winter trees one last time, it could be sharing a cup of tea with all the family and grandchildren together in the Hospice Garden, it could be having a shower independently to feel the warm water on your skin and to maintain a sense of dignity … for every person what matters most is personal and unique to them.

What we are talking about here is a concept called ‘personhood’ or the unique, dynamic and interrelated features of what makes you, you (Radah Krishna et al 2014).

Personhood is something that we tend to take for granted in health but is at risk in advanced illness where a person’s identity and wellness can be eroded as physical independence decreases and their care needs increase. Despite this, even in the face of functional decline, we know that people with advanced illness focus on living a meaningful life.

A systematic review by Sandsdalen et al 2015 found palliative patients’ priorities included upholding one’s sense of self, doing pleasurable activities, engaging with meaningful relationships and sustaining hope for the future.

Likewise, a recent longitudinal qualitative study by Brose et al 2023 found that for working age adults living with advanced cancer their priority was to continue engaging in everyday life however, the study found they were not always afforded the opportunity to do so and this had a detrimental impact on their quality of life.

So how do we ensure we give our patients every opportunity to engage fully in everyday life?

Rehabilitative Palliative Care is an approach that integrates the principles of rehabilitation around enablement, self-care and self-management into the holistic practice of palliative care.

It involves person-centred goal setting, to identify what matters most to each patient and makes this the shared focus of the interdisciplinary palliative care team (Tiberini and Richardson 2015).

A key principle of Rehabilitative Palliative Care is a focus on function beyond symptoms. This involves optimising a patient’s symptoms in the context of their functional ability and personal goals.

For example Peter has a diagnosis of advanced heart failure and is extremely breathless. To best support him we need to explore how his breathlessness is impacting on his everyday life and what the symptom is stopping him from doing that is important to him.

Peter’s goal is to be able to walk up to use the toilet independently so he doesn’t need to wake up his wife at night for assistance. It is therefore crucial that we assess and optimise the management of Peter’s breathlessness not only at rest but when he is up walking.

Whilst this may seem obvious, check how often you ask a person about their symptoms when they are in bed and sitting down and…if you actually then go onto assess their symptoms whilst they undertake the activities that are being affected. This simple change in your practice can make a real difference to how effectively your patient’s symptoms are managed at their full functional potential which gives them the best chance of achieving their priorities.

 

What potential do people living with palliative illness have?

Whilst deterioration in function is a considered a hallmark of advancing disease, people are often surprised to know that maintenance and even improvement in function is possible for many patients despite having a palliative condition.

There is a growing body of evidence that supports that palliative rehabilitation is feasible, acceptable and effective in improving palliative patients’ function and quality of life.

To draw out a few examples a randomised control trial of 288 patients with newly diagnosed advanced cancer, found that participation in a 12-week interdisciplinary programme of outpatient rehabilitative palliative care significantly improved patients’ prioritised problems, including function and overall quality of life compared with usual care (Nottelman et al 2021).

Similar findings are seen in palliative patients with a non-cancer diagnosis. Neo et al found that frail older adults with chronic lung disease experienced significant improvement in functional capacity following a multidisciplinary programme of integrated palliative care and rehabilitation in an inpatient setting compared with matched controls receiving usual care and that the rehabilitative intervention impacted positively on patients’ health service utilisation.

Underpinned by the strong evidence to support it, palliative rehabilitation involving an interdisciplinary approach is now recommended as best practice by the World Health Organisation (WHO Policy Briefing 2023).

 

How can we support our patients to reach their full functional potential?

Adopting an enabling culture across the whole interdisciplinary team is really important.

This involves all members of the team exploring what a person is able to do and wants to be able to do for themselves and enabling them to do this for as long as possible.

For example, Karen is a frail 78-year-old woman with advanced breast cancer who is admitted to a hospice for symptom control and respite. At home, despite significant pain, she has been managing to shower herself and dress into her clothes daily as this is really important for her to feel good and maintain her dignity.

Upon admission we establish Karen’s personal goal is to return home and to keep living independently.  In palliative care there can be a tendency to ‘overcare’ for people by assisting them with tasks that they could do for themselves.

Although this support may be well intentioned, if during her admission hospice staff do not actively afford Karen the opportunity to wash and dress on her own, she is at risk of losing her physical ability and confidence to undertake these tasks. This in turn may compromise her personal goal of returning home.

Enabling people to participate in activities of daily living is the best form of rehabilitation for people with advanced illness to maintain their functional independence and doing a little more each day can enable improvements to reach their potential within the limitations of advanced illness.

Top tips to support people to be as independent as possible and to live fully at the end of life:

1. Always explore with patients what matters to them and what their personal goals are – make these the focus of your team’s support.
2. Always assess patients’ function by asking them if they are having any difficulty moving around and with their daily activities and by observing how they move to proactively pick up any difficulties.
3. Refer a patient early to physiotherapy and occupational therapy for rehabilitation for example, when a person tells you they feel unsteady or you observe this, rather than waiting until are really struggling or they have had a fall.
4. Optimise symptom management in relation to the patients’ goals and function.
5. Always ask a person what they can manage to do for themselves and if they would like any assistance before helping them to avoid overcaring.
6. Encourage people to be active within the limitations of their illness by participating in their normal routines of getting up, personal hygiene, dressing, sitting out for meals – both at home and inpatient settings.
7. If a person’s function or health deteriorates consider how you can support them to adapt to this change to enable them to continue to participate in valued activities – for example by using mobility aids or equipment.
8. Remember that all members of the interdisciplinary team have an important role to play in rehabilitative palliative care to support patients to be the best they can be functionally and to achieve their personal goals right up until they die.

Why is it worth adopting a rehabilitative approach to palliative care?

Building the simple rehabilitative steps above into your palliative care practice can make a real difference at lots of different levels:

• Your Patients: are best supported to be as independent as possible and to do what matters to them right up until they die.
• Family and Carers: have the experience of the person they care about living to the full before their death which creates positive memories and improves bereavement outcomes.
• Your Professional Practice: is truly person-centred – by enabling each individual patient to identify and work towards their personal goals and priorities.
• Your Interdisciplinary Team: work in closer collaboration, unified by your shared focus to enable each patient to fulfil their person goals and priorities.
• Palliative Care and Hospital Service: As the UK population ages, there is a growing demand for palliative care with increasing pressure on services to be able to respond to the need. Adopting a rehabilitative approach enables people to be as independent as possible for as long as possible – this helps palliative patients to remain in their own home and helps enable people to return home from inpatient admissions earlier, freeing up your services for others who need them.
• Costs of care: The primary determinants of cost in the last year life are hospital admissions and care needs. The more functionally independent a person is the less care they need. This translates into less need for health and social care services and less cost. Rehabilitative Palliative Care is a strategic approach to help meet increasing palliative care needs whilst minimising costs of care for the future (Tiberini et al 2018).

So, as you think of your professional resolutions for 2024, and the strategic priorities for your team, why not make adopting a more rehabilitative approach to palliative care one of them?

If you’d like to find out more contact Rebecca Tiberini or follow the work of the EAPC Taskforce for Rehabilitation in Palliative Care.

Rebecca Tiberini

Physiotherapist, Educator, Project Leader and Clinical Supervisor in Rehabilitative Palliative Care and Strategic Leadership

Chair EAPC Taskforce for Rehabilitation in Palliative Care

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References

1. Radha Krishna L, Yong C, Koh S. The role of palliative rehabilitation in the preservation of personhood at the end of life. BMJ case reports, 2014; 09
2. Sandsdalen T, Hov R, Høye S, Rystedt I, Wilde-Larsson B. Patients’ preferences in palliative care: A systematic mixed studies review. Palliative Medicine 2015; 29(5)
3. Brose JM, Willis E, Morgan DD. The intentional pursuit of everyday life while dying: A longitudinal qualitative study of working-aged adults living with advanced cancer.Palliative Medicine. 2023;37(8):1210-1221. doi:1177/02692163231180911
4. Tiberini R and Richardson H. Rehabilitative Palliative Care: Enabling people to live fully until they die. A Challenge for the 21^st Hospice UK. 2015. ISBN: 978-1-871978-91-9
5. Nottelman L, Groenvold M, Vejlgaard, Peterson M, Jensen L. Early, integrated palliative rehabilitation improves quality of life of patients with newly diagnosed advanced cancer: The Pal-Rehab randomized controlled trial. Palliative Medicine, 2021, 35(7): 1344–1355
6. Neo H, Yap C, Teo L, Tan H, Xu H, Hum A, Abisheganaden J. Palliative Rehabilitation Improves Health Care Utilization and Function in Frail Older Adults with Chronic Lung Diseases. Journal of the American Medical Directors Association, 2021 Dec; 22 (12):2478-2485.
7. Policy brief on integrating rehabilitation into palliative care services. Copenhagen: WHO Regional Office for Europe; 2023. Licence: CC BY-NC-SA 3.0 IGO
8. Tiberini, R., Turner, K., Talbot-Rice, H. (2018). Rehabilitation in Palliative Care. In: MacLeod, R., Van den Block, L. (eds) Textbook of Palliative Care. Springer, Cham. https://doi.org/10.1007/978-3-319-31738-0_34-1