Proposed Palliative Care (Scotland) Bill

Introduction

Alzheimer Scotland is Scotland’s leading dementia voluntary organisation. We work to improve the lives of everyone affected by dementia through our campaigning work nationally and locally and through facilitating the involvement of people with dementia and carers in getting their views and experiences heard. We provide specialist services such as day care, home support and carer support (through training programmes and support groups) in over 60 locations and offer information and support through our 24 hour freephone Dementia Helpline, our website (www.alzscot.org) and our wide range of publications.

We welcome the opportunity to comment on the consultation on a proposed Palliative Care (Scotland) Bill. Dementia shortens the lives of those who develop the condition. Whilst it is difficult to estimate the contribution of dementia to mortality, given people with dementia will often have co-morbid health conditions, an estimated 25% of all deaths are attributable to dementia. Despite this dementia has not been widely recognised as a terminal illness and the need for palliative care is often overlooked .

The number of people with dementia will increase dramatically from approximately 63,500 in 2009 to 108,000 by 2031. It is therefore important the palliative and end of life care needs of people with dementia are understood and provided for.

General comments

Palliative care is often confused with end of life care. Palliative care covers the period from diagnosis of a non-curative illness to death (for the terminally ill person) and beyond (for family and close friends).

For people with dementia palliative care continues throughout the illness and is more evident in some stages of the illness than others. End of life care is the care provided in the period shortly before death and should be a continuation of good care provided over the long trajectory of the illness. One of the difficulties for people with dementia is the trajectory towards death is protracted and the diagnosis of dying is difficult, the person may have several near death experiences over a period of weeks or months.

Palliative care forms a spectrum, at one end lies supportive care whilst at the other specialist care concentrates on complex cases . It is important the distinction between generalist and palliative care is made:

• Specialist palliative care would be for complex cases where there are specific symptoms that need specialist input that can only be managed in certain settings under the direction of a palliative care specialist and would be consultant led. Everyone should have access this if that is what is required.
• Generalist palliative care can be delivered in a variety of settings and is a whole approach to non curative care.

Unlike many other terminal conditions with short periods of evident decline, dementia is characterised by a gradual deterioration . The long trajectory and the prolonged decline make it difficult to diagnose dying in dementia. The planning of palliative and end-of-life care must take account of these characteristics.

People with dementia can be described as dying from dementia or dying with dementia. Cox and Cook (2007) identified three distinct groups illustrate this:

• People who reach the end of life but die from some other identifiable condition, such as cancer, before reaching the final stage of dementia.
• People who reach the end of life with a complex mix of mental and physical problems but where the effect on the brain function is not as advanced.
• People who reach the end of life and die of the complications of dementia, such as end stage dementia.

The symptoms of dementia are not well understood or managed. Antipsychotic drug treatments are often prescribed to people with dementia in response to behavioural and psychological symptoms; Ballard (2008) estimates at least 70% of this prescribing is inappropriate . Inappropriate prescribing of antipsychotic drug treatments means the reason for the behaviours are not being met; this may result in the person with dementia continuing to endure pain and discomfort.

There is inequitable access to analgesia for people with dementia. There is no evidence that people with communication difficulties are less sensitive to pain . The expression of pain in someone with dementia may be confused with inappropriate behaviour and be treated with antipsychotic mediation rather than analgesia. The frequency and severity of physical and psychological problems in dementia is very similar to other advanced diseases such as cancer, cardiac disease, respiratory disease, AIDS and other neurological disease . An assessment of pain is still possible even in severe dementia; this is important as different pains must be treated differently .

Communication with people with severe dementia is difficult but it is essential to their wellbeing . There is a need for training of NHS, primary and care home staff in communication tools to better understand the needs of people with dementia.

Responses to consultation questions

What are your views on using this definition of palliative care for Scotland in the proposed bill?

We support the use of the World Health Organisation’s definition and outline of palliative care. This definition is also adopted by Alzheimer Europe in their position paper on the end of life care needs of people with dementia .

What are your views on whether all progressive, life-limiting conditions should lead to an entitlement to palliative care?

We agree that access to palliative care should be on the basis of need not diagnosis. However, inequitable provision and the long trajectory of dementia make this difficult to achieve in practice. Ensuring access to appropriate palliative and end of life care for people with dementia requires services and support structures in the community and long term care settings. This infrastructure does not currently exist for people with dementia. The element of choice is far more restricted for people with dementia and access routes to specialist palliative care is also limited.

List of indicators of high-quality palliative care; what other indicators should be included and why?

Place and cause of death - Dementia is not always explicitly referred to as the actual cause of death, at least not the main cause of death . This hides the impact of the disease and will undermine the validity of the indicators.

How well pain and other symptoms have been assessed, documented and managed, based on evidence-based clinical recommendations - There is a need for better understanding and management of the symptoms of dementia, to ensure these indicators are an accurate reflection of the quality and appropriateness of care provided.

The number dying in their place of choice as suggested in the Advanced Care Plan - Advance directives and advance statements must be written at a time when the person with dementia still has sufficient capacity to do so. The long trajectory of the illness makes it difficult for the person with dementia and their family to consider these decisions, as unlike many other terminal illnesses, they must be made long before the person reaches end-stage dementia.

Number of out of hours emergency admissions at end of life to all care settings - This would provide an informative statistic, as people with dementia are more likely to be admitted to hospital compared to older people who do not have dementia.

Stage at which palliative care was made available - This indicator may be difficult to achieve in practice, as palliative care for people with dementia should continue throughout the illness.

What are the funding implications of this proposal? Please provide detailed costings.

Alzheimer Scotland is not in a position to provide this information.

What other organisations etc. will be affected by the proposal and in what ways?

As approximately 25,400 people with dementia are living in care homes in Scotland they will be greatly affected by the proposals. Issues such as pressure on resources and high staff turnover mean care homes require support to ensure appropriate palliative and end of life care is provided to people with dementia.

References:

Alzheimer Society (2007) Dementia UK. A report to the Alzheimer’s Society on the prevalence and economic cost of dementia in the UK produced by King’s College London and London School of Economics

Hedley K et al (2006) Aspects of holistic terminal care in severe dementia. In Palliative care in severe dementia in association with nursing and residential care,
Hughes J C (ed) Quay Books Division, MA Healthcare Limited

Hughes J et al (2006) The practice and philosophy of palliative care in dementia. In Palliative care in severe dementia in association with nursing and residential care, Hughes J C (ed) Quay Books Division, MA Healthcare Limited

Murray S A et al (2005) Illness trajectories and palliative care BMJ Vol 330:1007-1011

Cox S & Cook A (2007) Caring for people with dementia at the end of life. In Palliative care for older people in care homes, Hockley J and Clark D, McGraw-Hill Higher Education

Oral evidence to the All Party Parliamentary Group on Dementia All Party Parliamentary Group on Dementia (2008) Always a last resort Westminster London

Regnard C et al (2006) Managing the physical symptoms of dying. In Palliative care in severe dementia in association with nursing and residential care, Hughes J C (ed) Quay Books Division, MA Healthcare Limited

Addington-Hall et al (1998) Specialist palliative care in non malignant disease Palliat Med 12:412-27

Regnard C et al (2006) op cit

Kirkwood T (1997) Dementia reconsidered: the person comes first Open University Press, Buckingham and Philadelphia

Alzheimer Europe (2008) End of life care for people with dementia Luxembourg

Morgan K & Clarke D (1995) To what extent is dementia underreported on British death certificates? International Journal of Geriatric Psychiatry Vol. 10: 987-990

Scottish Parliament Cross Party Group on Alzheimer’s (2008) People with dementia in NHS accident and emergency: Recognising their needs Edinburgh