Adaptation, dissemination, and evaluation of a cancer palliative care curriculum for the Indian health system.

In 2006, the Indian Health Service (IHS) and the National Cancer Institute (NCI) collaborated to develop an interdisciplinary palliative training program for health professionals in the Indian health system. Their goal was to improve clinician knowledge and skills in palliative care, to train future trainers, and to increase access to palliative care for American Indians and Alaska Natives. The combined program of participant self-study utilizing a multimedia CD-ROM and train-the-trainer seminars followed the curriculum entitled Education in Palliative and End-of-Life Care for Oncology (EPEC-O) with American Indian and Alaska Native Cultural Considerations. Three seminars trained 89 interdisciplinary health providers from throughout the Indian health system. Evaluations demonstrated increased clinician self-reported knowledge and confidence to train and high satisfaction with training. Forty-two of 67 participants completed an anonymous post-conference Web questionnaire. Nearly half had conducted or definitively planned palliative education sessions, and 57 percent started new palliative services at their practice sites.

Learning that leads to action: impact and characteristics of a professional education approach to improve the care of critically ill children and their families.

OBJECTIVE: To determine the impact of an innovative professional educational approach on clinicians' confidence and ability to make institutional improvements in pediatric palliative care. DESIGN: Evaluation to assess impact of educational intervention on participants and participant institutions. SETTING: Retreats lasting 2.5 days. PARTICIPANTS: Physicians, nurses, psychosocial staff, and bereaved parents. INTERVENTION: "Relational learning across boundaries" pedagogy. MAIN OUTCOME MEASURES: Analysis of participant questionnaires (n = 782, response rate of 84%), team leader surveys (n = 72, response rate of 71%), and follow-up interview with subsample (n = 21, response rate of 81%). Outcomes included confidence to act and institutional improvements achieved. RESULTS: Seventy-four percent of team leaders reported significant or moderate improvement in pediatric palliative care after the retreat; only 1% reported no improvement. Ninety-one percent credited the retreat experience as being somewhat or very instrumental to the improvements, which included the establishment of pediatric palliative care and bereavement programs, improvements in interdisciplinary communication, care coordination, clinician-family interaction at the bedside, and educational programs. Participants attributed the impact of the 2.5-day retreat to its key pedagogical features, involvement of family members as equal participants and participation of colleagues from other disciplines and care settings, as well as the ground rules used for the small group seminars. CONCLUSIONS: The intervention was successful in improving clinicians' confidence and catalyzed improvements in pediatric palliative care within participating institutions. Relational learning holds promise for professional learning, especially when the educational goal is tied to enabling a shift in social and ethical norms.

Next of kin perspectives on the experience of end-of-life care in a community setting.

BACKGROUND: Previous studies of end-of-life experience have been conducted primarily in urban medical centers and mostly focused on preferences for rather than experience of care. OBJECTIVE: To describe family end-of-life experience and perceptions of care across clinical settings from a semirural community perspective, identifying experiences associated with patient quality of life as rated by next of kin. DESIGN: Retrospective study using structured interviews with decedents' next of kin and medical chart reviews. SETTING/SUBJECTS: Two hundred seven nonsudden deaths (24 hours of medical care immediately prior to death) in Missoula County, Montana, in 1996-1997. RESULTS: Family respondents rated quality of life for decedents at lifes's end on a 0-10 scale and were grouped according to their rating as good, moderate, or poor quality of life. Significant differences between groups were found for five elements of experience: severity and frequency of pain and other symptoms; ratings of pain management; adherence to care preferences; life enrichment activities; and communication between and among patients, family members, and professional caregivers. Higher family ratings were associated with a member of the health care team being responsible for the patient receiving the best care possible, and having someone familiar with the patient and family available nights and weekends. CONCLUSIONS: Opportunities exist in community health care settings to improve quality of life for people approaching life's end. Clinicians, patients, and patients' families can contribute by engaging in open and ongoing communication about preferences for care, symptoms and their management, activities designed to enrich patients' personal experiences, as well as having patient care coordination and continuity of care on nights and weekends.

Medical advance care planning for persons with serious mental illness.

OBJECTIVE: This study examined preferences regarding medical advance care planning among persons with serious mental illness, specifically, experience, beliefs, values, and concerns about health care proxies and end-of-life issues. METHODS: A structured interview, the Health Care Preferences Questionnaire, was administered to a convenience sample of 150 adults with serious mental illness who were receiving community-based services from the Massachusetts Department of Mental Health. Clinical information and demographic data were also collected. RESULTS: A total of 142 participants completed the questionnaire. Although more than one-quarter had thought about their medical treatment preferences in the event that they became seriously medically ill, very few had discussed these preferences. A majority of respondents (72 percent) believed that someone should be designated to make medical health care decisions for a person who is too sick to make or communicate these decisions him- or herself. Common end-of-life concerns included financial and emotional burdens on family, pain and suffering, interpersonal issues such as saying "goodbye," spiritual issues, and funeral arrangements. Participants were most uneasy about the prolonging or stopping of life support by proxy decision makers. A total of 104 respondents (69 percent) expressed interest in formally selecting a health care proxy. CONCLUSIONS: Although persons with serious and persistent mental illness have little experience with medical advance care planning, they show substantial interest in it. Furthermore, they are able to consider and communicate their preferences. This study supports the feasibility, acceptability, and utility of a standardized approach to medical advance care planning with this population.

End-of-life treatment preferences of persons with serious mental illness.

OBJECTIVE: The goal of this study was to ascertain preferences for end-of-life care among persons with serious mental illness. METHODS: The participants were 150 community-residing adults with serious mental illness. The Health Care Preferences Questionnaire was administered to obtain information about treatment preferences in response to hypothetical medical illness scenarios: use of pain medication in the case of incurable cancer and use of artificial life support in the case of irreversible coma. Participants were asked what their treatment preferences would be for an imaginary person in each scenario ("other") as well as their preferences for themselves ("self"). RESULTS: For the scenario involving pain medication for incurable cancer, most participants chose aggressive pain management even if cognition might be affected (64 percent of respondents under the "other" scenario and 66 percent under the "self" scenario). Few participants thought a doctor should provide patients with enough medication to end their life (34 percent for self and 24 percent for other). For the scenario involving irreversible coma, respondents were divided in their choice regarding life support. Approximately one-quarter said that they would prefer to immediately terminate life support (28 percent of respondents for other and 29 percent for self), and half said they would choose to turn it off after a defined period (48 percent for other and 45 percent for self). CONCLUSIONS: Persons with serious mental illness were able to designate treatment preferences in response to end-of-life health state scenarios. Future research is needed to test advance care planning methods, assess stability of choices over time, and ascertain the utility of scenario-based preferences to guide end-of-life care decisions in this population.

Evaluation of the Missoula-VITAS Quality of Life Index--revised: research tool or clinical tool?

BACKGROUND: Quality of life (QOL) is a central outcome measure in caring for seriously ill patients. The Missoula-VITAS Quality of Life Index (MVQOLI) is a 25-item patient-centered index that weights each of five QOL dimensions (symptoms, function, interpersonal, wellbeing, transcendence) by its importance to the respondent. The measure has been used to assess QOL for hospice patients, and has been found to be somewhat complex to use and analyze. OBJECTIVE: This study aimed to simplify the measure, and evaluate the reliability and validity of a revised version as either a research or clinical tool (i.e., "psychometric" versus "clinimetric"). DESIGN: Two data collection efforts are described. The psychometric study collected QOL data from 175 patients at baseline, 3-5 days, and 21 days later. The implementation study evaluated the feasibility and utility of the MVQOLI-R during over six weeks of use. SETTING/SUBJECTS: End-stage renal patients on dialysis, hospice, or long-term care patients participated in the psychometric study. The implementation study was done in hospice, home health, and palliative care settings. MEASUREMENTS: The MVQOLI-R and the Memorial Symptom Assessment Scale. RESULTS: The psychometric and implementation studies suggest that the MVQOLI-R performs well as a clinical tool but is not powerful as an outcome research instrument. The MVQOLI-R has the heterogeneous structure of clinimetric tools, and demonstrated both relevance and responsiveness. Additionally, in a clinical setting the MVQOLI-R was useful therapeutically for stimulating communication about the psychosocial and spiritual issues important to the tasks of life completion and life closure. CONCLUSIONS: The MVQOLI-R has clinical utility as a patient QOL assessment tool and may have therapeutic utility as a tool for fostering discussion among patients and their clinicians, as well as for helping patients identify sources of suffering and opportunities during this time in their lives.

Measuring patient treatment preferences in end-of-life care research: applications for advance care planning interventions and response shift research.

Understanding the dynamics of patient treatment preferences can be important for end-of life are research, and has particular salience not only to guide a process of advance care planning (ACP) but also as an outcome measure. Ascertaining the reliability and responsiveness of preferences for life-sustaining treatments within and between patients is a necessary foundation for utilizing patient-agent congruence as an outcome for ACP interventions. This study validated a modified version of the Emanuel and Emanuel Medical Directive for use in both research and clinical applications. Seriously ill patients (n = 168) were asked at baseline and 21 days to consider four common end-of-life health state scenarios, to indicate their goals for treatment, and to state their preferences for six specific treatments. We investigated the reliability and validity of this tool. We found that preferences for life-sustaining treatments were highly intercorrelated, and internally consistent across treatments by scenario and across scenarios by treatment. Preferences for pain medications were, however, distinct from preferences for other treatments. Preference scores exhibited stability over follow-up, and demonstrated both concurrent and discriminant validity. We detected a small effect size for change in preferences as a function of health state change, suggesting that re-prioritization response shifts do occur but are small in magnitude in these patient samples over this time frame. We conclude that this measure is reliable and valid for use in clinical settings and for evaluating interventions designed to improve patient-agent congruence about patient preferences for life-sustaining treatments. Clinical applications of the tool are discussed.

Establishing a culturally sensitive palliative care program in rural Alaska Native American communities.

End-of-life programs that provide an option for patients to die at home are available in most U.S. communities. However, Alaska Natives living in remote Alaska villages often die alone in hospitals and nursing homes hundreds of miles away from home. The Bristol Bay Area Health Corporation (BBAHC), a tribal organization, is the sole provider of comprehensive primary care services to 34 Alaska Native villages located within a 46,000 square mile area in southwest Alaska. The closest tertiary care hospital is 329 air miles away in Anchorage. Because of the high cost of, and difficulties encountered in trying to deliver end-of-life care services to remote communities, a village-focused, culturally sensitive, volunteer and primary care program combined with a regionally based physician and home health nurse to deliver multi-disciplinary palliative care was developed. The Helping Hands Program blends cultural practices with contemporary palliative care medicine to allow Alaska Natives and others living in remote communities to be cared for at home through the end of life. Since the program was implemented in 1999, the percentage of home deaths for selected causes has changed from 33% in 1997 to 77% in 2001. The Anchorage-based Alaska Native Tribal Health Consortium (ANTHC) and the Alaska Native Medical Center (ANMC) have recognized the importance and success of the BBAHC program and are investigating expanding the program to other parts of Alaska. Centralizing the program in Anchorage will allow staff trained in palliative care to travel to regional Alaska Native hospitals to help train health care professionals.