APPG Inquiry into improving access to hospice and palliative care - BGS submission
The BGS has responded to an APPG Inquiry, calling for evidence into improving access to hospice and palliative care.
Older people are less likely than younger people to be offered hospice care, even if they have cancer, and older people living with frailty are very unlikely to receive such care.
An average GP’s workload will include approximately 20 deaths per year. Of these 5 will be from cancer, 5 from single organ failure, 2 will be sudden, and 8 will be among people living with frailty and multi-morbidity, including dementia.
1. What are the experiences of people and their families who have been unable to access hospice and palliative care, and what barriers did they face?
1.1 Geriatricians, nurses, allied health professionals and GPs play a critical role in delivering and ensuring that older people receive the right care at the right time. It is important to recognise that very many older people and their families experience high quality professional end of life care and support in a range of settings.
1.2 However, older people’s experiences of end of life care vary greatly. In our BGS Good Practice Guide on palliative and end of life care for older people we highlight issues of concern that have been identified in research studies into the end of life care experienced by older patients. These include:
- Dying patients frequently do not receive basic nursing care or assistance with eating and drinking
- Alternatively staff may focus on meeting physical needs at the expense of psychological and spiritual care
- Older people are less likely to receive appropriate pain control than their younger counterparts. This is especially so for patients with dementia
- In care homes end of life care may be impeded by inadequate staff training, poor symptom control and lack of psychological and emotional support
- Co-morbidity and drug reactions make symptom control more difficult
- Older people are less likely to receive hospice care
1.3 Our members are providing end of life care for people who spend their final hours and die in hospital on busy acute medical wards which are not always the best environment for meeting their patients’ needs and those of their families.
1.4 It is also important to fully recognise and value the significant amount of palliative care provided by social care agencies and families, with support from GPs. Greater recognition, training and support is essential.
1.5 Some of the barriers faced are reflected in statistical data which show that older age itself is a barrier. On the likelihood of receiving hospice care, Government statistics for England on place of death show that the likelihood decreases significantly with age:
- Deaths in hospices: 10.4% of people aged 0 to 64 and 10.0% of people aged 65 to 74 died in hospices compared to 2.1% of people aged 85 and over
- Deaths at home: the number of deaths at home also decreases with age: 33.9% of people aged 0 to 64 and 30.3% of those aged 65 to 74 died at home compared to 16.4% of people aged 85 and over
- Deaths in hospitals: the most common place of death for older people is hospital: 51% of people aged 75-84 and 45.7% of people aged 85 and over
- Deaths in care homes: this is followed by care homes - 19.3% of people aged 75-84 and 36.4% of people aged 85 and over
Where someone lives may also be a barrier as there is significant regional variation in place of death - for example, for people aged 85 and over:
|Place of death||South East - %||North East - %|
2. What are the factors that lead to unequal access to hospice and palliative care?
2.1 There is a lack of recognition that hospice and palliative care is appropriate for older people with frailty and multi-morbidity. We know that older people, even if they have cancer, are less likely to be offered hospice care. Older people living with frailty are very unlikely to receive such care.
2.2 A lack of recognition that an older person is approaching the end of their life is another key factor that contributes to unequal access to hospice and palliative care. The NHS Audit of end of life care shows:
- Cancer as a main cause of death was associated with 100% recognition of approaching end of life
- Cancer as a secondary cause of death also associated with very high recognition
- People not recognised as approaching end of life were more likely to have pneumonia, dementia and cardiovascular disease as main cause of death
- People not recognised as approaching end of life were very much more likely to have secondary causes of death recorded, in particular dementia and frailty
2.3 At a national policy level, our view is that population and societal changes are part of the contributing factors to unequal access to hospice and palliative care. These changes are well expressed in a recent journal article which stated that:
“the changing needs, experience and expectations of frail older patients dying slowly from complex multiple morbidity have moved increasingly out of alignment with the organisation and ideology of palliative care. The prolongation of dying creates enormous new challenges throughout all levels of society”.
3. What actions are palliative care providers, commissioners and policy makers taking to improve access to hospice and palliative care?
3.1 We know that there are some providers and commissioners who are making significant changes in order to improve access to palliative care. For example, Bromley Care Coordination based at St Christopher’s Hospice in South East London has been commissioned by Bromley CCG. This is a nursing led service, with the GP taking medical responsibility for the patient. It aims to enable older people with advanced illness or frailty who are thought to be in their last year of life to receive timely and co-ordinated care, and to die with dignity in a place of their choice. The team has a daily caseload averaging 260 patients and those under their care are 23% more likely to die in their preferred place of care.
3.2 The focus in the Bromley service has been on developing age attuned palliative care. BGS would like more services to be commissioned using a similar model.
4. What barriers do palliative care providers, commissioners and policy makers face in improving access to appropriate services?
4.1 The barriers can be summarised as being about attitudes; funding; workforce shortages especially in nursing; lack of integration within health and across health and social care, and capacity. A further structural barrier lies in the differences between the governance of hospices and other health services, which adds to the complexity of the commissioning process.
5. What national, regional and local levers would support improving access to hospice and palliative care?
5.1 We believe that a national strategy supported by sufficient investment is needed. This would include ensuring the provision of training which enables health and care staff to better recognise when an older person is moving to end of life phase, and would help to overcome some of the barriers that exist. The National Gold Standards Framework of Care for people nearing the end of life has been helpful in this respect; by improving the quality and coordination of care and in reducing the need for hospitalisation through end of life care training for frontline health and social care staff in the UK .
5.2 Increased access to Comprehensive Geriatric Assessment (CGA) and personalised care plans for all older people with frailty, dementia and complex, multiple long-term conditions are an essential means to delivering integrated, person-centred care. Part of the benefit of increasing access to CGA and care plans is in being able to identify when hospice and palliative care may be an appropriate option.
5.3 Overall, our view is that consideration of the levers to improve access to hospice and palliative care should not be looked at in isolation, but as part of a wider strategy for moving towards a society where all older people receive high quality, patient centred care when and where they need it.
BGS believes it is important to recognise that expertise, knowledge and skills in meeting the needs of frail older people as they approach the end of life are being practised primarily in hospital settings often by geriatricians and their teams. Specialist services provided by hospices and palliative care services do not currently have the capacity to meet the increasing needs of our older population. We call for greater investment in ensuring older people have access to specialist palliative care teams where appropriate, regardless of diagnosis or place of care. We would like to find ways of overcoming barriers so that there is closer working and liaison between geriatricians and allied health professionals, and palliative care specialists.