End-of-Life Conversations: Patients & Caregivers

[CaroleHammett]

I personally found the following study interesting because of my own concerns about my family understanding my feelings about death and dying. This study shows (in my opinion) that "end of life conversations" can make all the difference in my family's coping after I'm gone... and that is so important to me.

Carole

End-of-life Conversations Beneficial to Patients and Caregivers

ASCO Daily News, the official newspaper of the ASCO Annual Meeting

Wrap-Up Edition, June 17, 2008

Contrary to the common notion that end-of-life conversations may be unnecessarily stressful for terminally ill patients and provide no benefit to either patients or caregivers, a study presented during Monday's Health Services Research Oral Abstract Session demonstrated that such discussions have "cascading benefits" for both. End-of-life conversations are associated with less aggressive medical care, earlier integration of hospice, less emotional stress, and a better quality of life near death for patients. These conversations also ease caregivers' bereavement adjustment. Data supporting these conclusions were presented by Alexi A. Wright, MD, of Dana-Farber Cancer Institute (Abstract 6505).

Based on a patient population of 332, a total number of 123 patients (37%) who had end-of-life conversations were significantly less likely to have been admitted to intensive care units, placed on ventilators or resuscitated, and were more likely to have received hospice within a week of death (p < 0.05 for each). There was a significant inverse relationship between time in hospice and the number of aggressive interventions (p = 0.01). On the strength of these findings, the research team concluded that end-of-life conversations enable patients to participate in decisions about their terminal care in a manner that improves the quality of their final days.

The data also indicate that end-of-life conversations relieve rather than engender stress. Patients who have had these discussions were significantly more likely to accept their illness as terminal, to value comfort more than life extension by invasive means, and to have executed do-not-resuscitate orders (p < 0.001 for each). They were less insistent on knowing their life expectancy and less willing to die in intensive care units (p < 0.01). In general, they were less likely to suffer major depressive disorder or any other mental disorder (odds ratio: 0.73).

The study selected only patients who had principal caregivers, in most cases a spouse, other partner, or adult child. Thus, it began with 332 patient-caregiver dyads. When bereavement follow-up was conducted 8 months following each patient's death, 202 of the caregivers were available for grief-reaction assessment. The resulting data indicate that when patients had aggressive terminal care, caregivers had significantly more depression and regret, and that they were less prepared for death of their loved ones. In contrast, when patients had improved quality of death, their caregivers felt significantly better prepared for death (p = 0.001) and suffered less regret (p <0.001). In subsequent months they enjoyed better physical function, mental health, and overall quality of life themselves. This evidence suggests that when terminally ill patients experience improved quality of death as a result of end-of-life discussions, their caregivers benefit directly.

The source of patient information for this analysis was Coping with Cancer, a prospective, longitudinal, and multicenter study of 603 patients sponsored jointly by the National Cancer Institute and the National Institute of Mental Health. Multiple malignancies were represented in the population, most notably cancers of the breast, gastrointestinal tract including pancreas, and lung. Demographic and socioeconomic factors did not influence the data. The institutions from which data were collected affected the proportion of patients who had engaged in end-of-life conversations, but did not influence outcomes.

© 2005-2008 American Society of Clinical Oncology (ASCO). All rights reserved worldwide.

Source: http://www.asco.org/ASCO/Meetings/ASCO+Annual+Meeting/ASCO+Daily+News/Wrap-Up+Edition/Online+Exclusive%3A+End-of-life+Conversations+Beneficial+to+Patients+and+Caregivers

[CaroleHammett]

A belated note that a lengthy and very interesting discussion resulted from this posting in the Family Members/Caregivers forum at:

http://www.lungevity.org/l_community/viewtopic.php?p=364955

Affectionately,

Carole