JCO - open access - It Takes a Village (palliative care and end of life decisions - worth reading)

abstract: End-of-Life Care at an Academic Medical Center

"Background: End-of-life care is deemed to be poor in the United States – particularly in large teaching hospitals. Via a brief survey, we examined satisfaction with end-of-life care for those patients who died in our academic medical center from provider and family perspectives.
Methods: To assess the correlation between overall satisfaction between providers (attending, housestaff, and nurses) as well as family members for decedents who died in our hospital, we conducted a satisfaction survey regarding care in the last three days of life. The nine item survey was administered within 1 week of the patient s death to care providers and approximately 8 to 12 weeks to next of kin.
Results: There were 166 deaths examined over the four month study period. Overall satisfaction with care was 3.02 out of 4.0, and differed by respondent group (p= 0.035). Correlation between respondents was very low (range 0.02 to 0.51). The least discordance was between residents and interns (0.5), who had the lowest level of satisfaction (2.72). Housestaff and attendings had the lowest overall correlation in mean satisfaction scores (0.05). Most providers knew their patients for 24 hours or less.
Conclusions: Overall satisfaction was high, but there was discordance among different providers. Continuity of care was limited. Age and location of death alone did not significantly affect satisfaction with end-of-life care. Implications of this type of research for improving end of life care at academic centers are discussed."

abstract: A Qualitative Study of Family Involvement in Decisions About Life Support in the Intensive Care Unit

"We explored family involvement in decisions about life support interventions in the intensive care unit study using a critical incident technique to focus on specific case exemplars contributed by participants. A total of 6 family members and 9 health care professionals were interviewed. Participants described 2 options (life support or comfort care) and values associated with options: maintaining quality of life, surviving critical illness, minimizing pain and suffering, not being attached to machines, needing adjustment time, and judicious health care resource use. Barriers to involvement included not being offered alternative options; no specific trigger to initiate decision making; dominant influence of professionals’ values; and families lacking understandable information. Family members are unlikely to engage in decision making unless professionals identify the decision and address other barriers to family involvement."

abstract: A survey of the perspectives of patients who are seriously ill regarding end-of-life decisions in some medical institutions of Korea, China and Japan

Purpose
"The debate about the end-of-life care decision is becoming a serious ethical and legal concern in the Far-Eastern countries of Korea, China and Japan. However, the issues regarding end-of-life care will reflect the cultural background, current medical practices and socioeconomic conditions of the countries, which are different from Western countries and between each other. Understanding the genuine thoughts of patients who are critically ill is the first step in confronting the issues, and a comparative descriptive study of these perspectives was conducted by collaboration between researchers in all three countries....."

media: End-of-life decision rests with family, not doctors - thestar.com

Advance Directive Language and Laws May Interfere With Patient Wishes - RWJF

The guidelines created to protect patients making end-of-life decisions may have the opposite effect. A Robert Wood Johnson Foundation Physician Faculty Scholar identifies problems and offers solutions