School of Medicine and Pharmacology, University of Western Australia and Hollywood Private Hospital, Western Australia
Palliative care and oncology have been integrally related since the first days of modern hospice care, however the shared history is only a relatively recent one. The current palliative care movement is regarded as growing especially out of a single institution, St Christopher’s Hospice in London, under the leadership of the late Dame Cecily Saunders. As recently as the 1950s, reports appeared of unrelieved suffering in cancer patients dying at home;1 it was 1967 when St Christopher’s opened its doors and the mid-1970s before the first palliative care units opened in North America. The famous work by Elizabeth Kubler-Ross, On Death and Dying, focused public and professional thought on end of life experiences and care, and this was published merely 30 years ago.2
During the development of the specialty of palliative care, as most of our early patients were dying of malignant disease, the knowledge and skill base on which our practice was established was very much concentrated on the control of the symptoms of those with cancer. Over time, significant literature has been produced to guide pain and symptom control, to highlight emotional, social and spiritual care issues relevant to the dying person with cancer and to discuss the integration and shared care models that may best serve the cancer patient and his or her family. Two recent Australian publications cover many aspects of this expert knowledge and are worth accessing. These are the palliative care issue of the Australian Family Physician3 and the updated Therapeutic Guidelines: Palliative Care.4
Despite this shared experience, there has been at times a sense of uneasiness between the two specialities. It was argued that cancer centres and researchers in oncology did not put a high priority on symptom control and quality of life, despite the fact that many patients die of their disease. It was felt that undue focus was placed on chemotherapy and tumour response. In return, there was a feeling from some that palliative care practitioners were unwilling to consider anti-cancer therapies which might well be useful, or that they were ‘easing’ the patients to an earlier death than was necessary.5,6
However, generally and more so as time has progressed, there has been a recognition that separation of the fields has not been in the patients’ best interests. Cooperation between the two disciplines should be standard. Models have been proposed that encapsulate shared care and one such concept is illustrated in Figure 1. Palliative care itself has also recognised it needs to grow beyond the links it has traditionally had with cancer patients only and offer equitable care to all dying patients, based on levels of need, rather than diagnostic category.
Despite such models resulting in palliative care and oncology being close companions, the political and social progress made within each speciality may not be immediately obvious to the other speciality. Hence this issue of Cancer Forum focuses on some of the major achievements of palliative care over the last few years on a political level. Also included are some of the areas that are inadequately addressed within our current models of care. The authors that follow highlight the ‘big picture’ issues, which are the focus of palliative care in 2007. Throughout these contributions, commitment to a scientific vision and evidence-based medicine are clearly evident.
Will Cairns reminisces on the path of palliative medicine to speciality recognition and discusses training, education and workforce planning concerns. Over the past 20 years, palliative medicine in Australia and New Zealand has emerged from an informal network of enthusiasts to become a fully recognised specialty, with a comprehensive training program through the Royal Australasian College of Physicians.
Equity considerations are discussed by Janet Hardy in terms of the essential palliative care medications that should be available to all Australians. Many of the drugs commonly used in palliative care are not listed on the Pharmaceutical Benefits Scheme in Australia and are therefore not freely available to patients outside the acute hospital system. The Palliative Care Medicines Working Group was established by the Australian Government resulting in a separate palliative section within the Schedule of Pharmaceutical Benefits Scheme, which allows for authority prescribing of a number of medications that may be required by a palliative care patient.
These issues of equality of access are further explored by Patsy Yates, Kathryn White, Bev McNamara and Lorna Rosenwax in their papers on standards of and access to services for those with malignant and non-malignant disease, in rural and remote communities or with reference to those who do not fit into well-serviced demographic profiles. Pasty Yates reflects on growing requirements for specialist cancer services, as well as primary care, to integrate palliative care principles into their practice, and she discusses two projects in particular which have developed to address the educational needs of the workforce – the Palliative Care Curriculum for Undergraduates and the Program of Experience in the Professional Approach. Kathryn White focuses more on the education and support needs of primary healthcare practitioners in rural Australia to allow them to deliver optimal palliative care in rural communities.
The Western Australian Data Linkage System was used by McNamara and Rosenwax to study patterns of specialist palliative care delivery during the last 12 months of life, comparing use between different socio-demographic groups and causes of death. In this article they focus on the 8007 people who had either cancer alone, or cancer and another condition considered amenable to palliative care and who died during the study period. They show that approximately half of this group received some form of specialist palliative care, but particular groups of people were disadvantaged in relation to access to specialist palliative care. These people were less likely to die in their own homes – the place most often stated as the preference of patients.
With both the Federal Government election and negotiation of the next five-year Australian Health Care Agreements, advocacy will play an important role in the palliative care sector in 2007. Donna Daniell looks at the role of advocacy in palliative care in promoting the national agenda and maps out some of the recent initiatives that have improved palliative care within Australia.
Palliative care is now also recognised as an integral aspect of good medical care at the global level. It has recently been defined by the World Health Organization as:
“an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:
Palliative care is a recipient of significant National Health and Medical Research Council funding and is receiving support to establish multi-institution trial collaboratives. Government initiatives include the National Palliative Care Program. Other funding bodies have funnelled resources towards exploring the educational needs of practitioners, the social costs of caring for those with terminal illness, guidelines to assess palliative care needs and into comprehensive systems where information can be disseminated more widely via the internet. Some relevant websites are listed in Table 1.
The challenge for us in palliative care, in this rapidly changing political and social environment, is to continue to offer excellent care to those patients with cancer referred to us. We also need to ensure equitable care to those with non-malignant disease, those outside the tertiary hospital system and those who are economically disadvantaged.
5. MacDonald N. The interface between oncology and palliative care. In: Doyle D, Hanks G, MacDonald N, editors. Oxford Textbook of Palliative Medicine. 2nd ed. Oxford: Oxford University Press; 1998. p. 11-19.