Those Veterans More Likely to Die in ICU, Have No DNR Orders
By Brenda L. Mooney
BOSTON—Although most patients in the United States die of another condition, cancer is the focus of most end-of-life care studies.
The result, according to new VA-led research, is that families reported better quality of end-of-life care for veterans with cancer—and for dementia—than for those with end-stage renal disease (ESRD), cardiopulmonary failure or frailty.
The likely reasons? 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 the report published online by JAMA Internal Medicine and to coincide with a presentation at AcademyHealth’s Annual Research Meeting in June.1
The study looked at patients who died at 146 inpatient facilities within the VA healthcare system and was led by researchers from the Boston VAMC.
“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 Melissa Wachterman, MD, MPH, MSc, who in addition to her VA role is at Harvard Medical School and Dana-Farber/Brigham and Women’s Cancer Center. “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.”
Medical records and family surveys were examined for more than 34,000 patients who died at the VA between 2009 and 2012. Veterans 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.
In fact, one-third of those patients died in the intensive care unit, more than twice the rates for those with cancer or dementia. Those veterans also were less likely to have do-not-resuscitate orders.
On the other hand, death in a hospice unit—the inpatient setting with the highest level of family-reported quality —was more common among patients with cancer and those with dementia than among those with end-organ failure or frailty.
Overall, results indicate that patients who had been seen by a palliative care doctor received better end-of-life care based on reports from 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,” Wachterman said.
Among 57,753 veterans who died, about half of the patients with ESRD (50.4%), cardiopulmonary failure (46.7%) or frailty (43.7%) received palliative care consultations, compared with 73.5% of patients with cancer and 61.4% of patients with dementia.
In addition, about one-third of patients with ESRD (32.3%), cardiopulmonary failure (34.1%) or frailty (35.2%) died in an intensive care unit—usually associated with poorer end-of-life care. That rate was much higher than for patients with cancer (13.4%) and dementia (8.9%), study authors reported.
Family reports of excellent quality of end-of-life care were similar for patients with cancer (59.2%) and dementia (59.3%) but lower for patients with ESRD and cardiopulmonary failure (both 54.8%) or frailty (53.7 percent).
Study authors suggested several steps to improve disparities in overall quality of end-of-life care, including increasing access to palliative care and inpatient hospice for patients with ESRD, cardiopulmonary failure or frailty, and more discussions with those patients about preferred setting of death.
The researchers questioned whether diagnosis-related differences in patient and/or family preferences explained some of the differences in care perception.
“However, we found that the groups of patients who were less likely to receive palliative care consultation, less likely to have a do-not-resuscitate order, and more likely to die in the ICU—those with end-organ failure or frailty—also had lower rates of families reporting that their health care professionals offered the medical treatment that the patient and family wanted,” they pointed out. “This finding is more consistent with the notion that some diagnosis groups experience a greater mismatch between the care they receive and their underlying preferences, rather than diagnosis groups exhibiting sharp differences in preferences.”
Differences in perceptions regarding the treatability of different serious conditions and the reversibility of their associated acute complications were factors, however.
The researchers described how, for patients with end-organ failure, the clinical trajectory usually includes acute exacerbations that are temporarily responsive to interventions. When those interventions are no longer helpful, however, “it can be a difficult transition for patients, families and health care professionals. Therefore, differences in quality by diagnosis may reflect a failure to accept impending death and de-escalate aggressive treatment in conditions characterized by chronic progressive end-organ failure.”
While use of measures of treatment intensity as quality indicators generally has been limited to the field of oncology, study authors suggest that, because of the frequency of high-intensity care for patients with end-organ failure, the measures could be used as quality indicators among patients dying of other conditions as well.
One disturbing aspect of the research, according to the report, is the high prevalence of pain among veterans dying in the hospital. Most, more than 75%, had pain in the last month of life, with more than half reporting frequent uncontrolled pain.
Another recent study found that use of palliative care was highly inconsistent in veterans dying of cancer. For example, patients with brain cancer were more likely to receive palliative care than those with kidney cancer. In addition, patients older than 85 were less likely to receive palliative care than patients between the ages of 65 and 69, while patients older than 80 were more likely to receive hospice care than younger patients. Those with brain cancer, melanoma or pancreatic cancer were more likely to receive hospice than patients with prostate or lung cancer.2
At the same time, patients receiving VA care were less likely to receive hospice care for the minimum recommended three days, compared with those in Medicare or in other contracted care paid for by VA. VA patients first received hospice care a median of 14 days before death, compared with patients in VA-contracted care who entered hospice a median of 28 days before death, even though VA cancer patients are allowed to continue to receive curative treatment while in hospice care.
“Ideally, there shouldn’t be any difference in timing of this care,” said lead author Risha Gidwani, DrPH, a health economist at Veterans Affairs Palo Alto Health Economics Resource Center and a consulting assistant professor of medicine at the Stanford University School of Medicine. “Patients should receive a service based on their clinical need, not due to healthcare system factors.”
The situation might be even more serious for patients without cancer, according to the Boston VAMC study. “Our finding that patients with end-organ failure and frailty had rates of frequent, uncontrolled pain similar to those of patients with cancer (a group generally considered to be at high risk for pain) suggests another opportunity to improve care,” study authors wrote. “The lower rates of uncontrolled pain in patients with dementia must be viewed with caution, since pain is often underappreciated in this population, even by family members.”
Overall, the researchers suggested, applying protocols developed for cancer and dementia at the end of life to other conditions could substantially improve end-of-life quality.
“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,” they concluded. “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.”
An accompanying editorial notes that the VA health system has invested in “the rapid expansion of palliative care services and a reporting process that provides the data for this study and ongoing quality metric assessments.”3
Specifically, the VA has supported integration of palliative care services with disease-focused treatment to reduce the “terrible choice” of treatment focused on disease as opposed to a comfort approach to care according to commentary by Stacy M. Fischer MD of the University of Colorado School of Medicine at the Anschutz Medical Campus in Aurora, CO; David Bekelman, MD MPH, of the University of Colorado and the Denver VAMC; and F. Amos Bailey, MD, of the University of Colorado and the Birmingham/Atlanta Geriatric Research, Education, and Clinical Center at the Birmingham, AL, VAMC.
“While early access to palliative care services may remain the goal, current and future workforce shortages will continue to limit access,” the commentators wrote. “Despite the resources the VA health system has invested to develop well-trained palliative care teams and units, extending specialty palliative care to all patients facing life-limiting illness would quickly overwhelm these resources. So while efforts to expand the workforce both within and outside the VA health system are critical, further research is needed to understand what services and interventions are truly helpful and how they can be provided by the primary care teams.”
Not every patient needs a palliative care consultation with a specialist palliative care physician, nurse and social worker. Fischer, Bekelman and Bailey suggest understanding which patients need which components and expanding primary palliative care might be the only ways to meet the growing need for patients with advanced progressive medical illnesses.
1 Wachterman MW, Pilver C, Smith D, Ersek M, Lipsitz SR, Keating NL.Quality of End-of-Life Care Provided to Patients With Different Serious Illnesses Section of General Internal Medicine, VA Boston Healthcare System, Boston, Massachusetts Division of General Internal Medicine, Brigham and Women’s Hospital, Boston, Massachusetts Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, Massachusetts Center for Healthcare Organization and Implementation Research, VA Boston Healthcare System, Boston, Massachusetts Tufts Health Plan, Watertown, Massachusetts Center for Health Equity Research and Promotion, Department of Veterans Affairs Medical Center, Philadelphia, Pennsylvania University of Pennsylvania School of Nursing, Philadelphia Department of Health Care Policy, Harvard Medical School, Boston, Massachusetts JAMA Intern Med. Published online June 26, 2016. doi:10.1001/jamainternmed.2016.1200
2 Gidwani R, Joyce N, Kinosian B, Faricy-Anderson K, Levy C, Miller SC, Ersek M, Wagner T, Mor V. Gap between Recommendations and Practice of Palliative Care and Hospice in Cancer Patients. J Palliat Med. 2016 May 26. [Epub ahead of print] PubMed PMID: 27228478.
3. Fischer SM, Bekelman D, Bailey FA. Family Assessment of Quality of Care in the Last Month of Life. JAMA Intern Med. Published online June 26, 2016. doi:10.1001/jamainternmed.2016.1208