Introduction to the Special Double Number on End-of-Life Care
Policy Issues
Guest Editors: Joanne M. Coury , USA
and Ana Štambuk , Croatia
This collection of articles highlights several key aspects of the landscape of end-of-life care to provide a richer understanding of the challenges facing dying people and their families as well as professionals who help them. Charities, non-government organizations and governments, worldwide, are concerned about helping their most vulnerable members meet these challenges. Central to finding social policy solutions is negotiating the conflicting values of quantity and quality of life among medicine, law and religion that dealing with death and dying generate. Just as important is social consensus about what values are to be incorporated into these solutions. Finally, programs and services (primarily hospice and palliative care) that result from these policies can only be successfully implemented if humane aims are integrated with the economic and political environment in which they are to function.
Even countries with long-established end-of-life care programs still struggle with these issues. David Clark and his colleagues write about the UK hospice movement experience and how a succession of government planning decisions shaped end-of-life care, creating an institutional model. William Finn presents a different picture of historical development in the USA that has resulted in a system of community-based services using volunteers and home care teams. Financing is a universal problem, especially so for hospice and palliative care development in transitioning countries engaged in health care financing reform. Katalin Hegedus highlights the progress that the Hungarian hospice movement has achieved through activism in the reform process. Ann Dill with the assistance of Tatjana Fink, executive director of Slovenian Hospice assess the prospects for hospice development in the competitive funding environment created by welfare retrenchment in Slovenia in the transition from state socialism. None of these authors suggest that social consensus has been completely achieved in their countries. Anica Jušić, president of Croatian Society for Hospice/Palliative Care, addresses one of the most difficult and controversial issues in end-of-life care, euthanasia. Many different views exist within any society. What is important is whether or not there is the possibility of informed discussion and debate that translates into policies that citizens will support. In our article (Coury and Štambuk), we assume the desirability of public education and argue that hospice professionals, properly trained, are natural “public educators” both at the level of patients and families and in the community, as well. Joanne Coury expands on this community building idea in their discussion of voluntarism and hospice volunteering, highlighting the civil society aspects that shape policy design of end-of-life care.
Knowing that some of our readers might be unfamiliar with the details of the hospice and palliative care movement we offer some definitions of hospice and palliative care that have gained worldwide acceptance. 1
Hospice is a “philosophy of care” and a program for the terminally ill and their families, whether at home or in an institutional setting, that helps the dying to live as fully as possible in the time that remains. The goal is to help them attain a degree of mental and spiritual preparedness for death. Emotional support is an important aspect of hospice care that differentiates it from acute care. The hospice approach centers on helping to maintain the dignity and humaness of the dying process and on providing sophisticated medical and nursing palliative care using a multidisciplinary team approach – doctors, nurses, other health professionals, social workers, spiritual advisors and, most importantly, volunteers – that seeks to eliminate the suffering that accompanies the dying process.
Palliative care is treatment that improves quality of life through symptom relief and through helping the patient and the family make the best use of the time they have left to share. The goals of palliative care are different than those of curative care (investigation, diagnosis, cure and the prolongation of life). While curative care goals are reached cumulatively, palliative care goals – relief from distressing symptoms of the disease, sustained expert care, the security of a caring environment and assurance that the patients and their families will not be abandoned – can be reached independently of each other.
In Croatia, these definition will evolve to take into account Croatian cultural values that may differ from countries with established hospice systems from which these definitions are drawn. Meanwhile, end-of-life care is taking a more prominent place on the healthcare reform agenda with the establishment of the Ministry of Health's committee on palliative care in January, 2002. A recent report commissioned by the World Bank and the Croatian government 2 finds that factors that influence the increasing need for hospice and palliative care worldwide are shared by Croatia:
• an aging population with accompanying increasing rates of cancer and chronic cardiac and respiratory disease exacerbated by stresses from the recent war and decline in pension income and general economic situation that impacts the family support networks where end-of-life care was traditionally provided.
• increasing pressure on acute hospital services both in terms of finance and personnel compounded by the poor economic situation and need for intensive health reform based on cost containment in Croatia.
• increasing pressure on community services as a result of social welfare rationalization which in the Croatian case is magnified by the nascent and slow development of such services as they did not exist under socialism. This is a key point in being able to provide community palliative care and hospice services.
• responding in a humanitarian way to a demonstrable need albeit a speciality when there are insufficient mainstream medical/ nursing resources.
• mitigating the impersonal, highly specialized technology and bureaucracy of the modern acute-care hospital. There are four primary reasons for the pervasive inadequacy of terminal care in acute care settings:
1. the patient is regarded as a disease entity and not as a whole person
2. the patient is treated in an inappropriate environment of orientation toward cure rather than to alleviation of suffering.
3. the health-care staff is inadequately trained to confront their own fear of death and this leads to dehumanizing approaches to patient care including detachment, hostility, indifference and reliance on bureaucratic procedures that increase patient loneliness, depression and withdrawal.
4. the health care system focus on cost containment means that only time-limited aggressive treatment takes place in acute care hospitals because treatment plans appropriate for terminally-ill patients in acute facilities are not recognized for reimbursement with public funds or by private insurers that employ cost containment mechanisms.
Bilješke:
1 Buckingham, R. W. (1996.) The Handbook of Hospice Care. Amherst, NY: Prometheus Books.
2 Business Intelligence Service Healthcare Group. (s.a.) Integration of Healthcare Services in Koprivnica-Križevci County, Report 3, Appendix 10, Palliative Care and Hospice Functions. London.