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Editorial
Back to Our Roots
Palliative care in the clinical setting
Jeanine Blackford
Palliative Care Research Fellow, Austin Health, Clinical School of Nursing, La Trobe University, Melbourne VIC
Abstract
For the last ten years I have been involved in conducting research in palliative care across a variety of health care sectors in the Australian context. I have come to regard myself as a recent participant in palliative care after reading Lewis’s book on Medicine and care of the dying: a modern history.
His chapter on the development of palliative care services provides a comprehensive outline of the history of palliative care globally. Lewis highlights the remarkable achievements of palliative care champions across the western world. The efforts of many to recognise the needs of the dying and provide appropriate care, as articulated and practised by Dame Cicely Saunders in the United Kingdom, created a ripple of change and led to a holistic philosophy of palliative care. Lewis’s book demonstrates how far we have come to enact this philosophy and improve care of the dying.
Keywords
palliative care, holistic, hospice care service,community palliative care, residential aged care
Article Text
These champions of a systematic approach to care of the dying pressured health professionals and governments alike to broaden the focus of health care from cure to care. Through my own Australian research I have witnessed the influence of federal and state governments on increasing the availability of palliative care through a policy of ‘mainstreaming’. This policy aims to ensure that palliative care is available for all Australians rather than only for individuals located in urban areas close to a hospice or community palliative care service. It is evident that such an approach to care has also been adopted in other countries such as Sweden and UK.
In Australia in the late 1990s when ‘mainstreaming’ began there was concern among the palliative care community that their philosophy and principles would be diluted, misinterpreted or even abandoned, in other health care sectors. Certainly the research Professor Street and I conducted at that time suggested that there were some inherent dangers in expecting all practitioners to provide palliative care within their own health care setting. It was evident that practitioners working in palliative care units located in acute care settings grappled with providing high quality end-of-life care within an overarching philosophy of cure at all costs. In aged care facilities there was conflict with a philosophy of ‘living in place’ when a person was dying. In practice, living in place meant that health professionals needed to recognise that the aged care facility was now the elderly person’s home. This encompassed the principles of the rights of older people to choose their care and be involved in decision making. Yet what happens when a person no longer is ‘living in place’ but ‘dying in place’? Do they stay or go to a palliative care facility? When our research took us to the Australian bush, we found that to address palliative care needs of the local community a rural health service had created a palliative care space with facilities for the family to stay so they could be close to their loved one. Such space could also be converted to a birthing unit. The irony was not lost on us that limitations of resources meant that it was a shifting space from which a child entered the world and others departed. Since the introduction of ‘mainstreaming’ much has been done in Australia to educate and support health care professionals to be able to provide palliative care in various health care settings. The release of the ‘Guidelines for a Palliative Approach in Aged Care Settings’; programs such as PEPA (Program of Experience in Palliative Approach) which supports health professionals to undertake work placement in a palliative care service; as well as the work of various Palliative Care peak bodies such as Palliative Care Australia and Palliative Care Victoria, has lead to a further broadening of the availability of palliative care for all Australians. However in a climate of such success we cannot be complacent. The professed holistic palliative approach is in danger of being dominated by a medicalised palliative care. It is certainly acknowledged that palliative patients are sicker and have complex symptom burdens which require management. Medicine has extended the dying process with its capacity to address this symptom burden with palliative radiotherapy, palliative chemotherapy and other such treatments but these interventions represent only one part of palliative care service delivery. Unfortunately the dominance of medicine in palliation has the potential to relegate other health professionals to the sidelines.
Internationally there has been discussion about moving back to the grass roots of palliative intentions. In my current research I have had the opportunity to be at the grass roots and accompany community palliative care nurses ‘on the road’, to enter people’s homes and witness the care provided by an interdisciplinary team of dedicated health professionals. In acknowledging the palliative care champions of the world these are also the clinical champions who continue to work day to day in palliative practice and provide holistic care for the dying. They grapple with helping people to face death, make choices in care and death, and die with dignity. This is at times, against a backdrop of misunderstanding of treatment options from the dying person and their family. I witnessed the community palliative care nurses struggle when people vigorously pursued chemotherapy or radiotherapy, (each with their many side effects) to manage their symptom burden. Yet these clients still were hoping that such treatments would lead to a cure. From the point of view of the nurses and allied health professionals, the difference between the previous cure-oriented treatment and current treatment for palliation, was not clearly differentiated. This meant that many people could not start to prepare for death as they lived with the present hopes of cure in a palliative care setting.
Within our community and elsewhere there has been a strategy adopted to ‘reclaim the night’ as people try to create safe places to walk at night in their own neighbourhood. In this section of the journal I would suggest I have the privilege to introduce a variety of papers from health professionals who are trying to ‘reclaim the roots of palliative care’. We have a paper by Margaret O’Connor who provides a wonderful case study in how nutrition can be managed in the dying person. Everyone knows that without nutrients, death is inevitable, yet to provide succour is a fundamental part of any relationship. Many clinicians struggle to support families who want to nurture but their nurturing actions could actually hasten death. O’Connor provides clear strategies about how this might be overcome.
The paper by Margareta Brännström, Inger Ekman, Kurt Boman and Gunilla Strandberg highlights the broadening of palliative care beyond the cancer. The authors have documented through repeated interviews over a period of four and a half years, the illness journey of a man living with chronic heart failure (CHF) and that of his wife. As Brännström et al argue, this is not a generalisable study but it does provide clinicians with an insight into the lived experience of a person with CHF. I personally found it enlightening and I am sure as you read it you will find it informative to your own practice. Again we have moved beyond the medical dimension of palliative care to consider the social and psychological impact that a chronic life limiting disease has on a couple’s life.
In the paper by Jackie Walker and Pauline Lane we have a clear demonstration of clinicians striving to improve the quality of the palliative care that they provide. They present the information in such a way that readers in palliative practice will think, ‘We can audit and improve our own practice too’. Through their audit, they question the reliance on pharmacological interventions alone, and identify the potential benefits of complementary therapies to give a ‘more holistic view of symptom management’.
Finally in the paper by Carina Lundh Hagelin, Yvonne Wengström, Carol Tishelman, and Carl Johan Fürst we witness the tension between the need to provide more rigorous systematic assessment of patients’ needs using a Quality of Life tool and efforts to maintain the traditional hospice ideology. They present the positive and negative aspects perceived by nurses in using such an instrument and highlight that when active treatments are used in palliative care, there is a need for systematic assessments as a complement to more traditional nursing approaches, in order to ensure the appropriateness of the care that professionals can provide.
With the selection of papers from New Zealand, Australia and Sweden presented in the following pages we see evidence of researchers and clinicians returning to the grassroots of clinical practice and working to reclaim a holistic approach to palliative care.
References
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.
Lewis MJ (2007) Medicine and care of the dying: A modern history, New York, Oxford University Press.
Street A and Blackford J (2001) Communication issues for the interdisplinary palliative care team. Journal of Clinical Nursing 10: 643-650.
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