John Linder

Effects of a Problem-Solving Intervention (COPE) on Quality of Life for Patients with Advanced Cancer on Clinical Trials and their Caregivers: Simultaneous Care Educational Intervention (SCEI): Linking Palliation and Clinical Trials

CONTEXT Patients on investigational clinical trials and their caregivers experience poor quality of life (QOL), which declines as the disease progresses. OBJECTIVE To examine the effect of a standardized cognitive-behavioral problem-solving educational intervention on the QOL of patients enrolled on investigational clinical trials and their caregivers. DESIGN Prospective, multi-institution, randomized trial. QOL was measured repeatedly over 6 months. PARTICIPANTS Patients were simultaneously enrolled onto phase 1, 2, or 3 Institutional Review Board (IRB)-approved cancer clinical trials. INTERVENTION Intervention arm dyads participated in three conjoint educational sessions during the first month, learning the COPE problem solving model. Nonintervention arm dyads received usual care. OUTCOME MEASURES Global QOL was measured by the City of Hope Quality of Life Instruments for Patients or Caregivers; problem solving skills were measured by the Social Problem Solving Inventory-Revised. RESULTS The results are reported using the CONSORT statement. The analytic data set included 476 dyads including 1596 patient data points and 1576 care giver data points. Patient QOL showed no significant difference in the rate of change between the intervention and usual care arms (p = 0.70). Caregiver QOL scores in the intervention arm declined, but at less than half the rate in the control arm (p = 0.02). CONCLUSIONS The COPE intervention enabled the average caregiver to come much closer to stable QOL over the 6-month follow-up. Future studies should enroll subjects much earlier in the cancer illness trajectory, a common patient/caregiver theme. The maximum effect was seen in caregivers who completed the 6-month follow-up, suggesting that the impact may increase over time.

Palliative education: a didactic and experiential approach to teaching end-of-life care.

BACKGROUND The training in palliative care that health professionals receive is inadequate. An aging population, changing systems of health care delivery, and the debate about euthanasia and physician-assisted suicide increase the importance of ongoing education about palliative care. METHODS Three modules are offered by the University of California, Davis, West Coast Center for Palliative Education (WCCPE). Module 1, offered on-site, blends didactic and field learning using lectures, case studies, patient contact, and role modeling. Module 2 programs, held off-site, are customized in collaboration with the sponsor to address local needs and concerns. This module emphasizes group discussion and problem solving. Module 3 trains health care and custody staff and volunteer inmates at correctional facilities. Inmate training focuses on developing communication skills and a capacity to empathize through experiential exercises, dialog, and role-playing. RESULTS Off-site training significantly improved self-assessed knowledge about pain management and attitudes towards end-of-life care. Qualitative measures showed enhanced care-delivery skills for participants in all three modules. CONCLUSIONS Palliative care education can be enhanced when delivered close to the point of care using multimodal techniques that influence attitudes as well as knowledge.

Hospice Care for the Incarcerated in the United States: An Introduction

Prison populations throughout the Unites States are growing; the 1990s saw an average 6.5% per year increase. Average inmate age is increasing, as are both the number and rate of inmate deaths. Aging inmates experience health concerns typical of the general, free, aging population. Inmates have higher incidence of health complications associated with various circumstances, risk behaviors, and associated medical conditions. These circumstances include prison violence, incarceration-related constraints on exercise, and diet. Inmates are more likely to have a history of alcohol abuse, substance abuse or addiction and sex industry work. Risk-behavior conditions include human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS), hepatitis B and C, liver disease, tuberculosis, endocarditis, and cardiomyopathy. Hospice is increasingly the preferred response to the health and care needs of terminally ill inmates. Implementing hospice behind bars has some unique challenges in addition to those inherent in hospice work. This series will provide an in-depth look at four hospice programs for inmates in the United States.

Palliative and End-of-Life Care in Correctional Settings

The prison population in the United States has grown fivefold in the last 27 years. Like the general population, the inmate population is aging. With age comes infirmity, disability, and chronic conditions that may, over the course of years or decades, lead to death. Inmates enter the prison system in poorer health than their age-matched free counterparts. A growing number of inmates will die in prison. A few will receive medical or compassionate release in order to die “outside the walls.” Whether inside or outside, these dying men and women are entitled to receive high quality health care, including palliative care. Dying inmates face many of the same issues as the terminally ill in free society. However, death behind bars also poses some unique challenges to the dying, their prison family, their biological family, their caregivers and health care providers, custody staff, prison administration, and society as a whole. Social workers can play an important role in the care of these individuals and the people they are connected to both in prison and beyond its confines. This article provides important background for understanding the unique and the ubiquitous aspects of dying inmates and offers direction to social work professionals in serving these inmates, their loved ones, their custodians, and the larger society.