Not all end-of-life care will require specialist palliative care, but many will and they need to be identified and referred early.
Specialist care should be available for those palliative patients with complex needs – people who present with problems or needs that cannot be easily met.
Patients and their families need and want information to help them prepare when facing illness that is active and progressing. Helpful patient information has been published by Marie Curie.
What are ‘complex needs’?
Different people and individual doctors will interpret complexity in a variety of ways. As palliative care is holistic care, complexity could potentially relate to:
Certain disease types, certain personality types and some less structured families will have an increased risk of complex needs. What we mean by ‘complex’ is not well defined and is under-researched.
Recent work has explored factors that contribute to complex pain – pain intensity, neuropathic features and incident pain. Poor pain control affects wellbeing and wellbeing affects experience of pain. Identifying risk factors for complex pain enables early referral to specialist care.1
In people with poor cognition – particularly dementia – we are bad at recognising pain, often only recognising agitation, and this was shown in a study of patients in care homes with dementia.2 This found that adopting a systematic approach to assessing and treating pain can significantly reduce agitation in patients with moderate to severe dementia.
What do GPs want?
Studies have shown that some GPs would like to share care with a specialist team, while some want to hand over care.3 This highlights the need for specialist teams to be flexible and for each referral to be individually assessed. We know good collaborative working with specialist services has positive patient outcomes – dying in place of preference, better symptom management and empowering generalists.
Training has been shown to improve GPs’ skills and support them to discuss advance care plans with their patients. We know patients want to have these difficult discussions with their own doctor, but the focus is now to adapt these conversations for all palliative diseases and specific work on advance care planning in dementia is currently underway.
Palliative care is emotional and impacts on us as people and specialist services are there to support professionals as well as patients and their families. Good partnership between generalists and specialists is crucial to delivering best care.
What does specialist care offer?
Specialist care offers access to a range of services and a range of professionals. Patients’ needs are varied and improving quality of life needs a mix of different team members.
The patient will want to know if an intervention will improve symptoms and empower them to cope better. For others, achieving their treatment preferences and preferred place of death is their goal. Outcome measures are limited and research is ongoing into measuring specific outcomes – place of death is commonly used as a proxy measure for quality of care. Ultimately our goal is to improve the patient experience.
One interesting newer tool is the FAMCARE-2 – a novel way to measure family carer satisfaction with services across a variety of settings.4
The impact of these services on outcome has been explored and research has shown that specialist palliative care services:
- increased the amount of time spent at home by patients
- improved satisfaction for patients and carers
- improved symptom control
- reduced the number of inpatient hospital days
- reduced overall cost
- increased patients’ likelihood of dying where they wished to.5
Further work has shown that these benefits can be achieved regardless of setting, demonstrating that home, hospital, and inpatient specialist palliative care significantly improved patient outcomes in the domains of pain and symptom control, anxiety, and reduced hospital admissions.6
The first national VOICES survey – undertaken by the Office for National Statistics – showed that quality of care, being treated with dignity and respect and pain relief were best achieved in hospices, so there is much that specialist palliative care can offer in helping to improve patients’ experiences across all settings.7
What specialist services should be commissioned?
There is clear evidence of benefit from specialist palliative care services, but what aspect of those services gives the greatest benefit and most value for money? Helpful commissioning guidance has been written via a collaborative effort from a number of key organisations.
We know there are two key areas within the national quality improvement drivers where specialist palliative care can make a real difference – the domains of long-term conditions and patient experience of care.
For long-term conditions specialist palliative care can help to:
– Ensure people feel supported to manage their conditions
– Improve their functional ability in people through symptom management and patient empowerment
– Reduce time spent in hospital through effective community support and advance care planning
– Enhance quality of life for carers
– Enhance quality of life for people with dementia
When it comes to the patient experience domain, specialist palliative care can improve:
– People’s experience of outpatient care by meeting needs in the community and pre-empting and minimising crises
– Hospitals’ responsiveness to personal needs by working with hospital teams to encourage person-centred care, especially for those suffering from advanced progressive illness
– Experience of care for people at the end of their lives by providing services directly to people, alongside being a source of help and advice to generalist practitioners.
Specialist palliative care can also help deliver the QIPP indicators for end-of-life care by:
– Improving scores on the Death in the Usual Place of Residence indicator
– Reducing the number of hospital admissions of eight days or more which end in death
– Reducing emergency admissions in the last year of life.
Specialist palliative care can help commissioners to achieve their goals in terms of developing community services to support quicker and more effective discharge from hospitals, reducing unplanned crisis admissions with a better trained workforce and delivering dignity in care.
What will future challenges be?
‘Current and future needs for hospice care: an evidence based report’ was published earlier this year and drew attention to changing demographics and considered how that would drive future demand for hospice (and palliative) care.
It recommended hospices rise to the challenge of an ageing and increasing frail patient group, many of whom would have multiple comorbidities. This challenge exists for all services, especially primary care.
By 2025 people over 85 will represent half of all deaths in the UK and the number of people older than 85 will have more than doubled between 2010 and 2035. In the next eight years the number of people with dementia will have risen to over one million.
This demographic shift will increase demand for end-of-life care and the nature of the care will become more complex. We regard complex needs as requiring specialist services so potentially demand will increase and palliative and hospice services will need to adapt.
Alongside this shift, our focus on patient experience will impact on how we deliver care – traditional models will need to change. Hospices are biased towards providing services for younger patients with cancer – the elderly most commonly want a hospice death yet are least likely to receive it.
The report also challenges us to gain more research evidence about service and intervention effectiveness. Hospice care is considered to be ‘gold standard’ with high levels of patient satisfaction, yet can it offer the same service to an elderly patient group with cognitive failure?
Ethics is at the heart of patient care and the challenges that are arising will trigger more debate around the core ethical principles of autonomy – do good, do no harm and justice. Increasingly, as we focus on patient experience, individuals may ask for autonomy and control in illness, increasing euthanasia requests may arise. Can specialist palliative care influence demand for euthanasia? How do we address the Liverpool Care Pathway debate?
We will need to look at new ways of working and the imagination and creative way of developing services for people with dementia has much to teach us about dignity and compassion – for example the power of touch as demonstrated in the Namaste Care Programme.
Dr Jane Bywater is a consultant in palliative medicine at Hampshire Hospitals Foundation Trust and medical director at St Michaels Hospice in North Hampshire. She is also a trustee for the National Council for Palliative Care and Dying Matters Coalition
Thank you to the National Council for Palliative Care and the Dying Matters Coalition for support with this series of articles on end-of-life care. Please click the link for more information on the Find your 1% campaign, which aims to support GPs with identifying patients approaching the end of life and ensuring the appropriate care.
1 Nekolalchuk CL, Faisinger RL, Aass N, Hjermstad MJ, Knudsen AK, Klepstad P, Currow DC. (2013) The Edmonton Classification System for cancer pain: comparison of pain classification features and pain intensity across diverse palliative care settings in eight countries. Journal of Palliative Medicine
2 Husebo BS, Ballard C, Sandvik R, Nilsen OB, Aarsland D. (2011) Efficacy of treating pain to reduce behavioural disturbances in residents of nursing homes with dementia: cluster randomised clinical trial.BMJ, 343
3 Gardiner C, Gott M, Ingleton C. (2012) Factors supporting good partnership working between generalist and specialist palliative care services: a systematic review. British Journal of General Practice, 62 (598); 353-362
4 Beaumont C, Nekolalchuk CL. (2012) FAMCARE-2
5 Hearn J, Higginson IJ. (1998) Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review. Palliative Medicine, 12 (5); 317-332
6 Higginson IJ, Evans CJ. (2010) What is the evidence that palliative care teams improve outcomes for cancer patients and their families? Cancer Journal, 16 (5); 423-435
7 Department of Health. (2012) First national VOICES survey of bereaved people: key findings report