Historically, efforts to improve end-of-life care have focused primarily on patients with cancer. But few studies have looked at the quality of end-of-life care for patients with other serious illnesses, such as lung, kidney or heart failure.
In a US study of patients who died at 146 inpatient facilities within the Veteran Affairs health system, a research team led by investigators from Brigham and Women’s Hospital has found that family-reported end-of-life care was significantly better for patients with cancer or dementia than for patients with other serious illnesses.
“We need to broaden our attention to improve the quality of end-of-life care for all patients, not just those with cancer or dementia,” said lead author Dr Melissa Wachterman, an assistant professor of medicine at Harvard Medical School and a physician both in the department of psychosocial oncology and palliative care at Dana-Farber/Brigham and Women’s Cancer Centre and at VA Boston Healthcare System.
“Our study shows that while there is room for improvement in the quality of end-of-life care for all patients, this is particularly true for patients dying of heart failure, chronic lung disease and renal failure.”
The study examined medical records and family surveys for more than 34,000 patients who died in the VA health system between 2009 and 2012. The researchers found that patients with end-stage renal disease, cardiopulmonary failure (congestive heart failure or chronic obstructive pulmonary disease) and frailty were far less likely to receive palliative care consultations than patients with cancer or dementia. Approximately one-third of these patients died in the intensive care unit, more than double the rates for those with cancer or dementia, and they were less likely to have do-not-resuscitate orders.
In general, the research team found that patients who had been seen by a palliative care doctor – a physician who specialises in symptom management and support around medical decision-making for seriously-ill patients –received better end-of-life care, according to their families.
“Increasing access to palliative care at the end of life may improve the quality of end-of-life care for those with heart, lung, and kidney diseases – a group that is rapidly growing with the increasing number of aging Americans dying of these conditions,” said Wachterman.
Efforts to improve end-of-life care have focused primarily on patients with cancer. High-quality end-of-life care is also critical for patients with other illnesses.
To compare patterns of end-of-life care and family-rated quality of care for patients dying with different serious illnesses.
Design, Setting, and Participants
A retrospective cross-sectional study was conducted in all 146 inpatient facilities within the Veteran Affairs health system among patients who died in inpatient facilities between October 1, 2009, and September 30, 2012, with clinical diagnoses categorized as end-stage renal disease (ESRD), cancer, cardiopulmonary failure (congestive heart failure or chronic obstructive pulmonary disease), dementia, frailty, or other conditions. Data analysis was conducted from April 1, 2014, to February 10, 2016.
Main Outcomes and Measures
Palliative care consultations, do-not-resuscitate orders, death in inpatient hospices, death in the intensive care unit, and family-reported quality of end-of-life care.
Among 57 753 decedents, approximately half of the patients with ESRD, cardiopulmonary failure, or frailty received palliative care consultations (adjusted proportions, 50.4%, 46.7%, and 43.7%, respectively) vs 73.5% of patients with cancer and 61.4% of patients with dementia (P < .001). Approximately one-third of patients with ESRD, cardiopulmonary failure, or frailty (adjusted proportions, 32.3%, 34.1%, and 35.2%, respectively) died in the intensive care unit, more than double the rates among patients with cancer and those with dementia (13.4% and 8.9%, respectively) (P < .001).
Rates of excellent quality of end-of-life care reported by 34 005 decedents’ families were similar for patients with cancer and those with dementia (adjusted proportions, 59.2% and 59.3%; P = .61), but lower for patients with ESRD, cardiopulmonary failure, or frailty (54.8%, 54.8%, and 53.7%, respectively; all P ≤ .02 vs patients with cancer). This quality advantage was mediated by palliative care consultation, setting of death, and a code status of do-not-resuscitate; adjustment for these variables rendered the association between diagnosis and overall end-of-life care quality nonsignificant.
Conclusions and Relevance
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, largely owing to higher rates of palliative care consultation and do-not-resuscitate orders and fewer deaths in the intensive care unit among patients with cancer and those with dementia. Increasing access to palliative care and 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 overall quality of end-of-life care for Americans dying of these illnesses.
Melissa W Wachterman; Corey Pilver; Dawn Smith; Mary Ersek; Stuart R Lipsitz; Nancy L Keating