Sick To Death > Chapter 3 > Gems and Strategies for Change

Sick To Death book cover This extract from the online edition of Sick to Death and Not Going to Take It Anymore! is used with permission.

Gems and Strategies for Change

A growing number of provider programs are gaining recognition for exceptional work to improve end-of-life care. The American Hospital Association's Circle of Life awards have recognized thirty-five programs that have developed innovations in improving end-of-life care for patients in a broad range of ages, settings, and strategies. One was the hospice program at the Louisiana State Penitentiary at Angola, the largest maximum-security prison in the country, where most of the inmates are serving life sentences. With this innovative hospice program, inmates dying in the prison hospital are able to spend more time with family, be comforted by specially trained inmate volunteers, and receive pain management (Innovations in End-of-Life Care 2000).

Other leadership programs have received recognition. The National Coalition for Health Care published a monograph characterizing nine public and private programs that not only provide some component of exemplary care for fatal chronic illness but also measure results and focus on continuous improvement (National Coalition for Health Care and Institute for Healthcare Improvement 2000). The Milbank Memorial Fund and the Robert Wood Johnson Foundation published "Pioneer Programs in Palliative Care: Nine Case Studies" (2000), case studies of the history and characteristics of pioneering palliative-care programs in a common format. The National Hospice and Palliative Care Organization paired up with CAPC to author guidance for hospital-hospice partnerships (Center to Advance Palliative Care 2000b; National Hospice and Palliative Care Organization and Center to Advance Palliative Care 2001). Gradually, guidelines and guidance on pain, advance care planning, palliative-care consultation, and family support are becoming widely available.

Through the program called Community-State Partnerships to Improve End-of-Life Care, twenty-one states and regions have developed community-based initiatives to improve end-of-life care (Midwest Bioethics Center 2002). Activities include developing commissions and task forces to address end-of-life concerns; improving palliative care; establishing quality standards for care in nursing homes and other institutions that care for dying patients; and fostering cooperation and coordination among care providers, including emergency service workers and rescue squads. Another Robert Wood Johnson Foundation project, Promoting Excellence in End-of-Life Care, funded twenty-two grantees nationwide whose demonstration projects aimed at improving care for special populations (such as women, minorities), particular diseases (end- state renal failure, Alzheimer's), and challenging environments (nursing homes, dialysis centers, and jails and prisons) (Promoting Excellence in End-of-Life Care 2002).

The Department of Veterans Affairs accomplished substantial gains through an initiative focused on end-of-life and palliative care, which included measurable performance and a small bonus tied to accomplishment. VA Faculty Leaders Project for Improved Care at the End of Life helped thirty internal medicine residency programs to develop benchmark curricula for end-of-life and palliative medicine (Veterans Health Care System 2002). The success of this work evolved into a fellowship program for physicians, nurses, and other health-care professionals in hospice and palliative care. By 2004, every Veterans Medical Center had a clinical service in palliative care.

In sum, illuminating and vigorous forays into system reform are already occurring, but most are underfunded, short-term, and limited in scope. The next phase of innovation and evaluation might well involve more sizable changes and more enduring strategies for change. The pilots and innovations so far have shown that most patients can manage much of their care and plan ahead, that most symptoms can be prevented or relieved, and that many malfunctions in the care system can be overcome, at least some of the time.