Margaret M. Mahon

National Hospice and Palliative Care Organization (NHPCO) Position Statement and Commentary on the Use of Palliative Sedation in Imminently Dying Terminally Ill Patients

This paper was written by Timothy W. Kirk, PhD, and Margaret M. Mahon, PhD, RN, FAAN, on behalf of the Palliative Sedation Task Force of the National Hospice and Palliative Care Organization (NHPCO) Ethics Committee. Members of the Palliative Sedation Task Force were Timothy W. Kirk, PhD (Chair), Kathleen Bliss, MSN, RN, CHA, Pamela Dalinis, MA, BSN, RN, Margaret M. Mahon, PhD, RN, FAAN, Martha McCusker, MD, FACP, W. Brian Guthrie, MD, Marian Silverman, PhD, RN, CHPN, and Joseph Wadas, STL. This paper was approved by the NHPCO Ethics Committee in October 2009 and the NHPCO Board of Directors in December 2009. Creation of this manuscript was not supported by external funding. All members of the NHPCO Ethics Committee are volunteer members. Address correspondence to: Timothy W. Kirk, PhD, Department of History and Philosophy, CUNYdYork College, 94-20 Guy R Brewer Blvd., Jamaica, NY 11451, USA. E-mail: timothy.kirk@york.cuny.edu

Measuring quality of life in hospice patients using a newly developed Hospice Quality of Life Index

The purpose of this study was to evaluate the validity and reliability of the newly developed Hospice Quality of Life Index (HQLI). Sixty-eight patient/caregiver dyads from one hospice were asked to fill out the HQLI on admission and after 3 weeks of hospice care. Hospice experts evaluated the items on the tool to assess content validity. The content validity index (0.83) and the alpha coefficients (r=0.87 and 0.83) supported the validity and reliability of the HQLI. Item analysis revealed items with which patients were most satisfied and aspects of quality of life that were considered to be most important.

Palliative care for the terminally ill in America: the consideration of QALYs, costs, and ethical issues

The drive for cost-effective use of medical interventions has advantages, but can also be challenging in the context of end-of-life palliative treatments. A quality-adjusted life-year (QALY) provides a common currency to assess the extent of the benefits gained from a variety of interventions in terms of health-related quality of life and survival for the patient. However, since it is in the nature of end-of-life palliative care that the benefits it brings to its patients are of short duration, it fares poorly under a policy of QALY-maximization. Nevertheless, we argue that the goals of palliative care and QALY are not incompatible, and optimal integration of palliative care into the calculation of QALY may reveal a mechanism to modify considerations of how optimal quality of life can be achieved, even in the face of terminal illness. The use of QALYs in resource allocation means that palliative care will always compete with alternative uses of the same money. More research should be conducted to evaluate choices between palliative care and more aggressive therapies for the terminally ill. However, current limited data show that investing in palliative care makes more sense not only ethically, but also financially.

The HPNA research agenda for 2009-2012

The research committee of the Hospice and Palliative Nurses Association engaged in an iterative process to develop a research agenda for the association that is expected to provide a focus for graduate students and junior and senior researchers and guide our organizations research funding. In addition, this agenda will illustrate to stakeholders the importance of these research foci. The focus of this article is twofold: to describe the process for developing the agenda and describe the agenda itself with rationale for the foci.

Funeral Directors and Bereaved Children: Beliefs and Experiences.

As one component of an ongoing project to develop resources for bereaved children and families, funeral directors were surveyed about their experiences and practices with bereaved children. About one-third of respondents reported that they provided services specifically for bereaved children. Of these, some were proactive (reaching out to provide services) whereas others were reactive (responding only when information or services were requested). Many of the participant funeral directors found that families mediated childrens involvement or experiences. Often, the parents were perceived as an impediment to optimal experiences for the child. Many funeral directors who did not provide services described being encumbered by a lack of resources, or they perceived that other individuals or organizations in the community were filling that need.

US survey finds higher availability of palliative care programs, palliative physicians and consultation teams and palliative outpatient services in National Cancer Institute centres compared to non-NCI centres

Commentary on: HuiDElsayemADe la CruzM. Availability and integration of palliative care at US cancer centers. JAMA 2010;303:1054–61.