Credit: Anne Lowe/public domain

Families reported better quality of end-of-life care for patients with cancer or dementia than for patients with end-stage renal disease, cardiopulmonary failure or frailty because patients with cancer or dementia had higher rates of palliative care consultations and do-not-resuscitate orders and fewer died in hospital intensive care units, according to an article published online by JAMA Internal Medicine.

Most people in the United States die of things other than cancer. Yet, many efforts to improve end-of-life care have focused primarily on patients with cancer. There is growing recognition that patients with other serious illnesses need high-quality end-of-life care.

Melissa W. Wachterman, M.D., M.Sc., M.P.H., of the VA Boston Healthcare System and Brigham and Women's Hospital, Boston, and coauthors compared measures of end-of-life care and family-reported quality of care for patients with end-stage renal disease (ESRD), cancer, cardiopulmonary failure (congestive health failure or chronic obstructive pulmonary disease), dementia and frailty.

The study was conducted at 146 inpatient facilities within the Veteran Affairs health system among patients who died in inpatient facilities between 2009 and 2012 with diagnoses of the illnesses targeted in the study. The authors used data from medical records and the Bereaved Family Survey.

The authors measured end-of-life care that has been associated with high quality, including palliative care consultations, do-not-resuscitate orders, deaths in a hospital or palliative care unit, and death in an intensive care unit, a measure that has been associated with worse family-reported quality of care.

The authors report that among 57,753 patients who died, about half of the patients with ESRD (50.4 percent), cardiopulmonary failure (46.7 percent) or frailty (43.7 percent) received palliative care consultations compared with 73.5 percent of patients with cancer and 61.4 percent of patients with dementia.

About one-third of patients with ESRD (32.3 percent), cardiopulmonary failure (34.1 percent) or frailty (35.2 percent) died in an intensive care unit, much higher than the rates for patients with cancer (13.4 percent) and dementia (8.9 percent), according to the results.

Excellent quality of end-of-life care reported by families was similar for patients with cancer (59.2 percent) and dementia (59.3 percent) but lower for patients with ESRD and cardiopulmonary failure (both 54.8 percent) or frailty (53.7 percent).

The authors acknowledge study limitations that include the challenge of classifying patients near the end of life into mutually exclusive diagnosis codes, the difficulty in defining frailty, and a lack of generalizability outside the VA.

"While there is room for improvement in end-of-life care across all diagnoses, family-reported quality of end-of-life care was significantly better for patients with cancer and those with dementia than for patients with ESRD, cardiopulmonary failure or frailty. This quality advantage was mediated by palliative care consultation, do-not-resuscitate orders and setting of death. Increasing access to palliative care and increasing the rates of goals of care discussions that address code status and preferred setting of death, particularly for patients with end-organ failure and frailty, may improve the quality of end-of-life care for Americans dying with these conditions," the study concludes.

"While early access to palliative care services may remain the goal, current and future workforce shortages will continue to limit access. ... Not every patient needs a palliative care consultation with a specialist palliative care physician, nurse and social worker. Understanding which patients need which components and expanding primary palliative care may be the only way to meet the growing need for patients with advanced progressive medical illnesses," write F. Amos Bailey, M.D., of the University of Colorado School of Medicine, Aurora, and coauthors in a related commentary.

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