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RN, DipNed, BSc(Hons), PhD, FRCNA
Chair in Nursing, Australian Catholic University & St Vincent's Healthcare Campus
This paper was presented at the National Hospice and Palliative Care Association Conference, held in Canberra in September, 1997.
[Abstract] [Introduction] [References]
The proportion of elderly people in Australian society continues to grow with an increasing number of very old people. This situation is challenging for health care providers in their public health endeavours to keep people fit and healthy in old age and reduce the level of therapeutic health care required by this population. However, old age and death are natural partners. It is well recognised that in old age many people review and evaluate their life. The existential dimension of life, that is the meaning of one's life and being, can override physical needs. The need for supportive emotional care which validates their humanness is prominent for terminally ill elderly people and their carers. Through an understanding of this substantial need, palliative care health professionals can expand their knowledge of what it means to be living with an incurable illness at any age.
The title of this paper - Terminally Old - was chosen to raise the profile in the palliative care context of elderly people, a significant population of people in our society, who, by virtue of years lived are all confronted with an ever diminishing time for living.
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The health needs and care contexts of elderly people who are terminally ill are many and varied. Increasingly older people are living longer in the community, some in supportive, familiar environments but many are living alone often with few social supports. The older you live the fewer social supports that exist as many relatives and friends predecease the very old person.
Major health needs relate to the older person's ability to remain active and independent within the context of declining physical and social resources. Older people are often required to adapt to a rapid succession of changes, many associated with loss. Those with the ability and strength to adapt are at an advantage to those without the innate and external resources to do so.
At the recent World Congress of Gerontology, held in Adelaide, there was an emphasis on dementia care and pain management in older people. Historically people with dementia have not received palliative care, yet their need for such care is often paramount. In particular, challenges exist for adequate pain management for people with dementia - yet little is known of the assessment and management of pain in this population of older people. Future research and education is required in this specific area of care for this population of elderly people who are often not able to articulate their needs and wants.
Importantly, the palliative care needs of the older person must be recognised and managed appropriately old age cannot deny them of the opportunity of specialised care in the end stage of a long life. The scope of this paper does not allow for an exploration of all palliative care needs of older people but will target the significant area of spiritual and existential needs.
Research suggests that palliative care needs to integrate all domains of supportive care - the physical, the psychological, the spiritual and existential.
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This position is affirmed in most definitions of palliative care. Ate older population is generally not viewed as dying from a specific pathology but from an accumulation of age-related deteriorations - those conditions which have an increased incidence with longevity. Some people simply die of 'old age'. It is only in more recent times that palliative care is recognised as needed for some groups of older people, particularly the frail elderly living in nursing homes or hostels, with an emphasis on relieving those symptoms of a distressing physical nature, particularly chronic pain.
However, it is now emerging, in a society which has become familiar with making its requirements known and which expects a high standard of service delivery, that beyond physical and psychosocial needs there are other, even more demanding areas, that are in need of palliation in its broadest sense. When confronted with an impending end to one's fife, life itself is pared of its trimmings. What is important to life - people, events and objects - come into sharp focus. The meaning of life, one's own and life more broadly, that is the meaning of life and having lived, is questioned and hopefully requited for some. For older people this process can commence with the passage of years and the realisation that death is no longer in the distance. For younger people with an incurable condition this process is concertinaed into a relatively shorter time frame than for the older person. Yet the catalyst is the same; time for living is shortened and limited, and the quality of life is threatened.
What then can we learn from the experience of dying in older people that can be considered applicable for all ages of people who are in need of palliative care?
During an education programme, entitled Humanistic Communication, conducted this year at Sacred Heart Hospice in Sydney for nurses caring for people with AIDS Dementia Complex, Erikson's life stages and developmental tasks were explored. This education programme was developed from work with confused elderly people living in nursing homes and who have difficulty in communicating their sense of reality. According to Erikson (1977), in old age . the developmental tasks revolve around the concepts of Integrity vs Despair , with associated basic virtues of Renunciation and Wisdom as they review their life's events and achievements.
Interestingly, the group explored the possibility that for younger people whose life is potentially shortened they too may proceed through all of Erikson's life stages and developmental tasks including the old age stage of Integrity vs Despair as they prepare for their death. From adulthood these developmental tasks and associated basic virtues, according to life stages are:
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The group also explored their understanding of humanism upon which the model of communication with people living with AIDS Dementia Complex was built. These concepts were identified as:
Humanism:
These concepts were the principles upon which communication strategies were developed.
Through this educative process consciousness was raised and existing communication practices were challenged. The nurses came in contact with their personal and professional values upon which they needed and wanted to base their practice. I believe this educative experience deepened an understanding of the existence, that is the lived reality of people who, because of their medical condition were not freely able to express their sense of reality. From feedback following this programme we have heard that entrenched attitudes have been shifted to principles which support dignity and self-worth.
This experience is recounted here as an example of the application of knowledge gained from caring for older people and from which new knowledge was laid down in caring for another age group of people with specific communication difficulties. It is an experience which holds value for other, if not all people living with an incurable illness.
There is an emerging recognition of people's spirituality and their requirements for spiritual care, which has been reactivated in a world dominated by technology that demands concrete stimulus-response communication and is largely devoid of a cultural context. "While spiritual beliefs are generally considered a private concern, the need for spiritual caring is often foremost for individuals when challenges to health occur. The meaning of one's life and purpose, sense of hope, and belief in oneself and a power beyond self are confronted and questioned" (Ronaldson, 1997:1). The literature cites four spiritual needs: the Search for Meaning, a Sense of Forgiveness, the Need for Love, and the Need for Hope (Van Heere, 1997:162-164).
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Only three articles on palliative care and spirituality have been published in medical journals since 1994. These articles are entitled: The spiritual component of palliative care by Grey (1994) in Palliative Medicine; Spirituality and palliative care by Schuetz (1995) Australian Family Physician; and The role of spirituality in hospice care by Bollwinkel (1994) in Annual Academy of Medicine Singapore.
Collectively these articles recognise the spiritual elements of a person's life who is in need of palliative care, and identify the need for specific education in this area of care. "Guidelines for spiritual caregiving include self-knowledge of one's own spiritual needs, authenticity and honesty, and respect for beliefs and practices of the patient and family" (Bollwinkel, 1994:263).
Interestingly, in a study conducted in a palliative care setting in Quebec, Canada, the McGill Quality of Life Questionnaire was adapted to measure the existential domain for people with a life threatening illness. The results identified four subscales: physical symptoms, psychological symptoms, outlook on life, and meaningful existence. Only the meaningful existence subscale correlated significantly with a single item scale of rating of overall quality of life (Cohen et al., 1995:207-219).
How then do the spiritual and existential coexist? Spirituality incorporates existential thought, that is the meaning pertaining to existence. Spirituality also includes belief systems, both informal and formal. One emphasises the other and together they encapsulate the aspects of life and living not adequately described by other domains namely the physical, psychological and emotional worlds.
Roger Woodruff (1996:358) identifies spiritual and existential distress encountered by people living with an incurable illness. Many of these symptoms are experienced by very elderly people nearing death. These are:
Returning to the past: value and meaning of a person's life; worth of relationships; value of previous achievements; painful memories or shame; guilt about failures; and unfulfilled ambitions.
Relating to the present: disruption of personal integrity - physical, psychological and social changes, and increased dependency; meaning of a person's life, and the meaning of suffering.
Relating to the future: impending separation; hopelessness; meaninglessness; and concerns about death.
In providing spiritual care some important directions include Relationships and Belonging, and Self-worth and Meaning.
Regarding Relationships and Belonging: there is now limited time for living and issues need to be confronted and resolved, either actively or passively. There is a sense of completing existing relationships - an expression and enhancement of relationships is of spiritual benefit.
Regarding Self-worth and Meaning: the person must be given space to express choices which personalise the care they receive. Flexible and adaptable approaches to care affirm their individuality and assert respect for human dignity founded on self-worth and meaning.
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The challenge for providing spiritual care for people living with an incurable illness is for carers to identify their own spirituality. This requires a reflection on life's meaning, beliefs and values held.
Older people are expected to die but younger people are not. From older people we can relate their experiences of facing death to people of younger ages when they are confronted with a premature end to life. Palliative carers need to consider the specific palliation needs of older people and appreciate the potential impact of caring for those who are Terminally OK for all ages. There is a spirit that exists in many older people ripened by the passage of years - a wisdom from which we can all learn.
I will finish here with a poem by Jenny Joseph (1991:1) entitled Warning which, I believe, captures the spirit of old age:
"When I am an old woman I shall wear purple
With a red hat which doesn't go, and doesn't suit me.
And I shall spend my pension on brandy and summer gloves
And satin sandals, and say we've no money for butter.
I shall sit down on the pavement when I'm tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.
1 shall go out in my slippers in the rain
And pick the flowers in other people's gardens
And learn to spit.
You can wear terrible shirts and grow more fat
And eat three pounds of sausages at a go
Or only bread and pickle for a week
And hoard pens and pencils and beermats and things in
boxes.
But now we must have clothes that keep us dry
And pay our rent and not swear in the street
And set a good example for the children.
We must have friends to dinner and read the papers.
But maybe I ought to practise a little now?
So people who know me are not too shocked and surprised
When suddenly I am old, and start to wear purple".
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Bollwimkel, E. M. (1994) The role of spirituality in hospice care, Annual Academy of Medicine, Singapore, 23(2):261-263.
Cohen, S. R.; Mount, B. M.; Strobel, M. G. & Bui, F. (1995) The McGill quality of life questionnaire: a measure of quality of life appropriate for people with advanced disease, Palliative Medicine, 9(3):207-2119.
Erikson, E. (1977) Childhood and Society (2nd edition), Paladin Books:London.
Grey, A. (1994) The spiritual component of palliative care, Palliative Medicine, 8(3):2115-221.
Joseph, J. (1991) Warning, in S.Martz (Ed) When 1 am an Old Woman 1 Shall Wear Purple, papier-mâché Press: California, pl.
Ronaldson, S. M. (1997) Nurses as spiritual carers, in S. M. Ronaldson (Ed) Spirituality: The Heart of Nursing, Ausmed Publication: Melbourne, pl.
Schuetz, B. (1995) Spirituality and palliative care, Australian Family Physician, 24(5):775-777.
Van Heere, B. (1997) Spiritual care of palliative care patents, in S. M. Ronaldson (Ed) Spirituality: The Heart of Nursing, Ausmed Publications: Melbourne, pp162-164.
Woodruff, R. (1996) Palliative Medicine, Asperula Pty Ltd: Melbourne, p358.
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