Dementia and Palliative Care –Practical and Ethical Considerations Jenny Abbey Professor of Nursing (Aged Care) QUT and TPCHHSD

..an external, independent and strong outside group is essential in checking progress and helping to chart the way forward Menadue, J (2003) Health reform- possible way forward, Australian Health care summit, Canberra 19 August

The lack of palliative care for patients without cancer was the greatest inequity of all. Hughes J, Robinson, L, Volicer, L (2005) Specialist palliative care in dementia, Editorial, 330, 8 th January, p.57-58

This creates an ethical, professional obligation for all of us

In 2004 there were 2872 Residential Aged Care Facilities (RACFs) 142,000 allocated aged care places 10th May

This means approx 113,600 people with some kind of cognitive impairment.

This means, at the very least, 85,200 people with progressive dementia who will require palliative care now or in the not to distant future

. …the practical matters of managing a palliative approach for dementia are very different

1967 Sans Everything (Robb, 1967)

1975 Wolfensberger's The Origin and Nature of our Institutional Models

1995 The emphasis on normalisation - on valuing people, which was so prominent at Beachdale- seemed to result in management where residents were subjected to far more investigations and 'cure' oriented behaviour. The emphasis on maintaining a valued social role for the resident translated into keeping them alive when no other course was available. At an environment where less emphasis was put on this notion, keeping residents comfortable was more to the fore.

1983 Pearson ‘caretaker’ ‘professionally oriented model’

1986 report by Rhys-Hearn, Quality Of Care In Nursing Homes.

1987 ‘Living in a Nursing Home’ (Commonwealth/State Working Party, 1987) Outcome Standards (Commonwealth/State Working Party on Nursing Home Standards

There is an urgent need for suitable and effective training of all nursing home staff. If present care standards are to be maintained then staff will need to have a keener appreciation of older people's needs, hopes and desires, as well as a better knowledge of direct care techniques. (Graycar, 1987, p.55)

1993 Burdekin was critical of care of the elderly suffering from cognitive deficiencies and suggested education of care staff as one way to make improvements. (Human Rights & Equal Opportunities Commission, 1993)

1997 *Aged Care reforms *User pays model * Ageing in place

In October 1997 RCS included support for palliative care for the first time

1995 Outcome Standards Monitoring * freedom of choice * home like environment, *privacy and dignity, *variety of experience and safety.

1995 Total funding for aged and community care $3 billion

2005 Total funding for aged and community care 7,286 billion

Workforce change

Growth in Services

Figure 4. Number of people receiving residential aged care services and community aged care packages, 1990 to 2000

Australian Government Department of Health and Ageing 2004, Guidelines for a Palliative Approach in Residential Aged Care, Rural Health and Palliative Care Branch, Australian Government Department of Health and Ageing Canberra  pallguide.htm

 Australian Government Department of Health and Ageing 2004, Guidelines for a Palliative Approach in Residential Aged Care, Rural Health and Palliative Care Branch, Australian Government Department of Health and Ageing Canberra 

2004 Hogan recommended and budget supported supplements for palliative care and dementia

 changes in attitudes of consumers and staff – and what remains to be done

 advance directives for people with a diagnosis of dementia

when to see dementia as a terminal illness

 a progressive worsening of memory resulting in increased confusion and disorientation

 Speech and the ability to communicate often deteriorate to the point where the person may eventually become incoherent or completely mute

Behavioural changes may occur which can lead to a person being belligerent, sobbing or screaming; or strikingly passive and quiet, immobile and detached.

 The person’s ability or desire to move independently can decline, leaving them bed/chair bound

The person’s capacity for self-care progressively diminishes, making them totally dependent on carers

 The person’s ability to eat independently gradually disappears, often associated with a diminished ability to swallow and increased risk of aspiration. A progressive loss of appetite almost always follows.

 Other complications can include bowel and bladder incontinence, muscle atrophy and contractures, increased susceptibility to delirium, recurrent infections, pneumonia, pain, peripheral shutdown, bed sores and general skin breakdown. Delirium can result in increased restlessness and agitation.

Qizilbash and Lopez-Arrieta, 'Common medical problems', p See also, Victorian Department of Human Services, Dementia-Care and Support in Victoria and Beyond, State of Victoria, November People in the final stages:... are mute, immobile, have developed a flexed posture position, are doubly incontinent, require feeding and need continual turning to prevent pressure sores. Disorders relating to dementia severity, such as cachexia, dehydration, aspiration pneumonia and sepsis from decubitus ulcers or urinary tract infections are the major immediate causes of death, as well as age- related diseases such as myocardial infarction, stroke and cancer.

 the nurse’s role in documenting life history and choices

*Keep the media honest *Campaign for advance directives *Further research *Education +++ *Critical mass – to check progress and help chart the way forward