At life's end, most people experience physical suffering, as well as significant emotional, spiritual, and social distress. Often, patients are not recognized as actively dying. Suffering may be exacerbated by usual medical care, in which aggressive, futile, or iatrogenically harmful treatments frequently are continued. During this time, palliative care treatment plans have the potential to improve quality of end-of-life care and reduce hospital costs. Despite the benefits of palliative care, it is not routinely available in inpatient settings without designated hospice units. Most individuals are likely to die in a hospital or nursing home, creating a compelling need to address processes of care for actively dying patients in inpatient settings. The "Best Practices for End-of-Life Care for Our Nations' Veterans" (BEACON) trial, was a multi-center implementation-facilitation trial of an intervention to improve the quality of end-of-life care in VA Medical Centers (VAMCs).
The primary aim of this study was to evaluate the effectiveness of a multi-component intervention for improving processes of care provided in the last days of life in VAMCs.
The second aim was to conduct after-death interviews with next-of-kin and qualitative analysis of their perceptions of the care provided to the veteran and family.
The BEACON study was a real-world, pre-post implementation trial in six VAMCs. The 4-month, multi-modal intervention targeted VAMC inpatient providers, including physician, nursing, and ancillary staff. It consisted of preparatory site visits, a staff training program, a newly developed Comfort Care Order et decision support tool built into the CPRS, and follow-up consultation. The intervention team travelled to each site to conduct two weeks of comprehensive in-service training. Staff were trained to identify actively-dying patients and implement a set of best practices of traditionally home-based hospice care for dying patients. The team provided assistance with policies, procedures, and skill training needed to implement comfort care interventions.
To control for secular trends, introduction of the intervention at each VAMC was staggered across time at six-month intervals using a multiple-baseline, stepped wedge design. Data on processes of end-of-life care (last 7 days) were abstracted from the CPRS medical records of all veterans who died before, during, and after the intervention (January 2005-February 2011).
A priori, five processes of care were identified as primary endpoints to indicate quality of end-of-life care: 1) presence of an order for opioid pain medication at time of death; 2) a do-not- resuscitate (DNR) order in place at time of death; 3) location of death; 4) presence of enteral feeding tube or intravenous line at time of death; and 5) physical restraints in place at or near time of death.
The medical records of 6,067 veterans were abstracted. Pre-post analyses showed changes in 14 of the 16 variables in the expected direction. In analyses adjusted for longitudinal trends, significant intervention effects were observed for orders for opioid pain medication at time of death, antipsychotic medications, benzodiazepines, death rattle medications, sublingual administration, nasogastric tubes/intravenous lines, and advance directives. Intervention effects were not significant for location of death, do-not-resuscitate orders, or restraints.
A secondary analysis of baseline data described pain management practices for imminently dying patients and examined factors associated with these processes. Of the records reviewed, 64.2% had an active order for an opioid medication at time of death. The findings indicate a need for improving availability of opioids for end-of-life care in the inpatient setting, especially within the last 24 hours. Modifiable factors, such as family presence and goals-of-care discussions suggest potential targets for intervention to improve recognition of the dying process and proactive planning for pain control.
Another secondary analysis described the presence and timing of DNR orders for imminently dying patients and examined factors associated with these processes. Of the records reviewed, 63.7% had an active DNR order at time of death. Among these, records indicated that the order was written within the last 24 hours for 32.2%. Results suggest that the DNR process might be improved by interventions that target ICU settings, facilitate transitions to less intensive locations of care, ensure the involvement and availability of pastoral care staff, and create environments that support the presence of family members.
In-depth, face-to-face interviews were conducted with 78 recently bereaved next-of-kin. In this analysis, we used hermeneutic phenomenology to explore experiences of being present at the hospital death of a loved one and to examine the role of VA nursing staff in facilitating family presence before, during, and after the patient's death. Two major themes emerged: 1) settling in, characteristic of the experiences of wives and daughters in the initial phase of the patient's hospitalization; and 2) gathering around, characteristic of the experiences of a wide array of family members as the patient neared death. Family presence at the time of death not only revealed patient and family preferences, but also reflected nursing behaviors encouraging and enabling family involvement. Subsequent analyses have revealed the ways next-of-kin know and assess their loved one's end-of-life preferences.
This broadly-targeted intervention to change practice patterns led to modest but statistically significant changes in several processes of care. Thus, it has potential for widespread dissemination and improvement in quality of end-of-life care in VA Medical Centers and other hospital settings.
- Bailey FA, Williams BR, Goode PS, Woodby LL, Redden DT, Johnson TM, Taylor JW, Burgio KL. Opioid pain medication orders and administration in the last days of life. Journal of pain and symptom management. 2012 Nov 1; 44(5):681-91.
- Bailey FA, Allen RS, Williams BR, Goode PS, Granstaff S, Redden DT, Burgio KL. Do-not-resuscitate orders in the last days of life. Journal of palliative medicine. 2012 Jul 1; 15(7):751-9.
- Woodby LL, Williams BR, Wittich AR, Burgio KL. Expanding the notion of researcher distress: the cumulative effects of coding. Qualitative Health Research. 2011 Jun 1; 21(6):830-8.
- Williams BR, Woodby LL, Bailey FA, Burgio KL. Identifying and responding to ethical and methodological issues in after-death interviews with next-of-kin. Death Studies. 2008 Jan 1; 32(3):197-236.
- Bailey A, Williams BR, Woodby LL, Goode PS, Redden DT, Burgio KL. Intervention to Improve Care at Life's End in VA Medical Centers. Poster session presented at: European Association for Palliative Care Research Annual Forum; 2012 Jun 1; Trondheim, Norway.
- Drentea P, Williams BR, Burgio KL. Next-of-Kin’s Experiences of the Dying Body at the End of Life: The Good, the Bad and the Ugly. Paper presented at: Southern Sociological Society Annual Meeting; 2012 Mar 21; New Orleans, LA.
- Williams BR, Lewis DR. Wrapped in their Arms”: Next-of-kin’s Perceptions of How Hospital Nursing Staff Support Family Presence Before, During and After the Death of a Loved One. Paper presented at: American Academy of Hospice and Palliative Medicine Annual Assembly; 2012 Mar 9; Denver, CO.
- Wittich AR, Williams BR, Woodby LL, Bailey A, Burgio KL. He Got His Last Wishes” – Next-of-Kin Ways of Knowing Patient’s End Of Life Preferences and Affirming Clinical Conformity. Poster session presented at: American Academy of Hospice and Palliative Medicine Annual Assembly; 2012 Mar 7; Denver, CO.
- Williams BR, Woodby LL, Burgio KL. A Room Full of Chairs Around His Bed: Being Present at the Death of a Loved One in VA Medical Centers. Poster session presented at: Gerontological Society of America Annual Scientific Meeting; 2011 Nov 21; Boston, MA.
- Wittich AR, Williams BR, Woodby LL, Burgio KL. The Whole Power of Attorney: Understanding Advance Directives Among Next-of-Kin in VA Medical Centers. Poster session presented at: Gerontological Society of America Annual Scientific Meeting; 2011 Nov 19; Boston, MA.
- Williams BA, Baker P, Allman R. Once Married, Still Married: Is Marital Status Associated with Variation In End-of-Life Concerns, Preferences, and Attitudes? Presented at: American Academy of Hospice and Palliative Medicine Annual Assembly; 2010 Mar 5; Boston, MA.
Aging, Older Veterans' Health and Care, Health Systems
End-of-Life, Hospice, Pain