There are around 750,000 people in the United Kingdom currently spending their last months of life with advanced dementia, and it is clear that such individuals require very specific and tailored end of life care.
However, a recent report produced by researchers from Marie Curie, UCI, and the Royal Free Hospital, identified that people with dementia at the end of life are less likely to be referred for palliative services. The research also showed that sufferers are offered less pain control, are more likely to be inappropriately admitted to hospital, and are subject to more invasive medical procedures than their cognitively intact counterparts.
Admission to hospital causes an increase in delirium and distress for people with dementia. Further evidence (Addington Hall 1998) showed a person living with dementia will experience more suffering and pain than a person living with cancer in the last six months of their respective lives.
The report identified several challenges to improving end of life care in people with advanced dementia, namely:
- Families are often not told about the terminal nature of dementia.
- High staff turnover in dementia care settings.
- Uncertainty about prognosis due to poorly defined markers and disease progression.
- Lack of capacity and lack of advance directives make decision making difficult.
- Communication barriers caused by dementia.
- The patients awareness of pain and inability to communicate this.
- Co-morbidity in 91 per cent of people at end of life with dementia.
It is therefore clear that any care provider hoping to deliver a high quality end of life services to those individuals with advanced dementia, will need robust recruitment and retention strategies – aiming to attract and keep a high calibre of staff, reducing turnover and offering a consistent service.
Above and beyond this, an end of life dementia service will require staff training programmes tailored to the specific challenges of advancing dementia – including how to assess pain in, and to converse with and understand people with serious communicative difficulties.
Families and carers
In addition, any high quality care service will need to consider not only the needs of the patient but also those of the family. The opportunity for families to come together, to learn, and to be supported is essential, as is having an open and transparent culture where end of life wishes and worries can be discussed in a safe and supportive place.
The Good Care Group supports the principle that, where possible, people at the end of life should be able to die at home if that is their wish. The Group is currently developing a pioneering strategy which will enable the highest quality of care in the home to the end of life.
The strategy includes the establishment of a fully trained palliative care workforce, and a defined palliative care pathway developed to meet the needs and preferences of the patients themselves and their family/carers. It is being developed in conjunction with leading external experts and will result in the development of an elite team of specialist palliative professional carers who will deliver bespoke and individualised plans of care to patients and their families/carers, working closely with other healthcare professionals to ensure round the clock, fully integrated, holistic and tailored service to the end of life.
The benefits of end of life care provided in the home are clear for all to see, and are supported by a strong evidence base. Improved quality of life for patients who are enabled to stay in comfortable and familiar surroundings with tailored one-to-one support, free from unnecessary hospital admissions and painful invasive treatments, is central to this.
Furthermore, care and support for spouses and family, helping to alleviate stress and morbidity following the death of a loved one, is a valuable additional consideration.
Also, delivering end of life care in the home can, in addition to being preferential to the individual, carry considerable savings benefits.
Choosing to die at home
Significantly, two thirds of people state that they want to die at home (Demos Report), but only around 18 per cent of people are enabled to do so, with the remaining 82 per cent spending their last days in hospitals, care homes or hospices (National Office of Statistics).
Research in January 2010 supports these statistics with estimates that less than 20 per cent of patients are able to die at home, with some 3t6 per cent dying on NHS wards and an additional 8 per cent in ICU.
Interestingly, the Demos Report suggests that, in the long run, community based end of life care would cost the NHS less than the current £20 billion per year, a statement which is supported by research undertaken by Marie Curie Cancer Care.
Care services minister, Paul Burstow, says the government wants to ensure that the care people receive at the end of life is “compassionate, appropriate and gives people choices in where they die and how they are cared for….We are consulting on extending patient choice and want to move towards a national choice offer that supports those who wish to die at home.” (BBC News, November 2010).
In 2008 the Department of Health published the National End of Life Strategy, which identified 12 strategic aims which included raising the profile of the need for good end of life care, analysing funding and the strategic commissioning and coordination of services. In addition, the aims covered training front line staff to understand and deliver excellent end of life care and to identify those who are at the end of life, and to develop robust and fully integrated care plans which include provision for rapid access to medical and care services – reducing unnecessary admissions to hospital and enabling people to die in the place of their choosing.
The strategy promised 24/7 community nursing for palliative care patients, but to date, 50 percent of PCT’s fail to provide this. Since the publication of the strategy in 2008, a new government has been installed, and in 2010 the NHS White Paper “Equity and excellence: Liberating the NHS” was published, describing the need for more patient choice and a focus on clinical outcomes.
However, there is very little mention of end of life care specifically. End of life care has been identified as one of six priorities for the NHS, which has developed the National End of Life Care Programme, which leverages the Gold Standards Framework – a co-ordinated process to providing high quality of care, and the Liverpool Care Pathway – an integrated pathway which guides treatment in the last days of life and after death care. It is a top priority for the NHS to support people who wish to die at home.
Sadly, though, recent reports by the Health Service Ombudsman suggest that in places the NHS is seriously failing to provide appropriate end of life care in the home. The management of pain relief, particularly intravenously, poses challenges for under-resourced teams of district nurses, and out of hours services that are not licensed to provide morphine. This is leading to panic 999 calls and unnecessary admissions into hospital.
Recent research (Sept 2010) from the Dana Farber Cancer Institute found that cancer patients who die in hospital and ICU settings experience significantly poorer quality of life than those who died at home. Patients were more likely to suffer both physical and emotional distress and be subjected to aggressive and painful invasive medical procedures. Interestingly, the family carers of those patients who died in hospital and ICU settings were five times more likely to experience post traumatic stress disorder following the death, and were four times more likely to suffer from prolonged grief.
It is evidently clear that at-home end of life care is a desirable option for many people facing terminal illness. The right to die at home with dignity is something that every person should be entitled to. However, the provision of such care appears to be sporadic and inadequate, often including poorly trained and unsupported staff providing services which are often unreliable and disjointed. High turnover means that consistency of care worker is highly unlikely, making it harder to deliver a seamless and fluid plan of care to the end of life.
Any end of life home care service will require a workforce fully trained to deliver palliative care. This includes being able to identify and understand the physical and psychological changes that may occur, and how to react to these.
A fully informed workforce will enable smooth and consistent care through to the end of life, and will avoid panic 999 calls and unnecessary admissions to hospitals.
Care workers must have a clear understanding of the roles and responsibilities of other key healthcare professionals, such as district nurses and GPs, to ensure that the patient receives an integrated service of the highest standard. A robust care plan will be required which speaks to not just the care agency, but to the other professionals involved in the care of the patient – ideally an integrated care planning tool such as the Liverpool Care Pathway, which is widely accepted across the UK, would be utilised.
But staff competence and holistic care planning is only half the story. Any care provider offering end of life care needs to be able to ensure continuity of care through the provision of a small but dedicated team of reliable and expertly training care staff. Care providers should employ robust retention strategies – offering desirable pay and benefits packages and sensible working rotas which allow for time for recuperation. After all, end of life care, when delivered well, is intensive and potentially exhausting for the care staff as well as the patient and family.
Solid training programmes and onsite support and advice are also essential. End of life care is a 24/7 service, and round the clock care and access to advice and medical expertise is essential – services offering piecemeal care by the hour will simply not be able to achieve positive outcomes for patients and their families.
Zoë Elkins, Head of Care, The Good Care Group
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