Response to Health & Sport Committee call for evidence on Palliative Care (Scotland) Bill

Consultation body

Scottish Parliament, Health and Sport Committee

Response date

September 2010

Focus of consultation

Call for evidence on Palliative Care (Scotland) Bill

General principles of the Bill and definition of palliative care

We are in agreement with the general principles of the Bill and the proximity to the WHO definition of palliative care. We also support the use of the term life-limiting condition and there being no requirement for a diagnosis of a specific life-limiting condition. Under-diagnosis is a particular problem in dementia; there will be many people in the moderate to severe stages of the illness who have not received a diagnosis of dementia. Access to palliative care should be on the basis of need and not diagnosis.

We support the provision of support to family members in dealing with the condition and the definition of family member outlined in the Explanatory Notes.

Specific duty on provision of palliative care

It is necessary to have a specific duty for provision, as under the general duty there has been a lack of provision and an inequitable service. Palliative care is more developed for cancer than any other terminal illness.

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 limited for people with dementia and access routes to specialist palliative care are also limited.

Provisions on reporting and indicators

It is difficult to anticipate how the recorded information will enable monitoring of the quality of palliative care provided, as is anticipated in the Explanatory Notes. In addition it will not enable the measurement of equity of provision across the wide range of life-limiting conditions.

Indicators one to four do not allow for the identification of the number of people with dementia. Therefore it will not be possible to measure whether a new duty to provide palliative care has improved support to people with dementia and their carers.

The trajectory of dementia is long; it would be open to interpretation when a palliative care approach was provided. People with dementia die at different stages of dementia with different co-morbidities. It is more likely that a palliative care approach would be adopted for a person who has dementia and cancer. A person in the later stages of the illness, who may have had many near death experiences over a period of several years, may not be considered as having palliative care needs until the final stage of their life. However, they would likely benefit from this approach much earlier in the illness trajectory.

Indicator eight will give an insight into the number of people who are admitted to hospital to die; however, it will not reflect those admissions which only last a short period with the person returned home to die. This is also a measure of inappropriate admission and lack of community supports.

Indicator eleven is not sufficient; those providing palliative care to a person with dementia require specialised training in dementia palliative care. This is necessary in order to respond appropriately to the complex communication and the behaviour issues in a person with diminished capacity. 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 dealt with; 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.

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