What you die of may determine the quality of care you receive during the final weeks or months of your life.
For, according to a new study, the families of patients with cancer or dementia tend to be more satisfied with their loved one’s end-of-life care than the families of patients with other illnesses or medical conditions, such as organ failure and general frailty.
The apparent reason for this disparity: The rates of palliative-care consultations and do-not-resuscitate orders are higher among patients with cancer or dementia. In addition, those patients are less likely to be in a hospital intensive care unit at the time of their death.
“Historically, efforts to improve end-of-life care have focused primarily on patients with cancer,” write the authors of the study. “More recently, there has been increasing recognition that high-quality end-of-life care is also critical for patients with serious illnesses other than cancer, particularly with the aging of the US population.”
The study was published online Sunday in JAMA Internal Medicine.
For the study, researchers led by Dr. Melissa Wachterman of the VA Boston Healthcare System examined the medical records of the 57,753 patients who died in the VA health system between 2009 and 2012 with a diagnosis of cancer, dementia, end-stage renal (kidney) disease, congestive heart failure or frailty. The researchers also analyzed survey data collected from the families of more than 34,000 of those patients.
End-of-life care was measured by three factors: palliative care consultations and do-not-resuscitate orders (both associated with high-quality care) and death in an intensive care hospital unit (associated with poor-quality care) rather than in an ordinary hospital unit or a specially designated palliative-care unit.
Wachterman and her colleagues found that about 60 percent of the families with patients who had either cancer or dementia reported that their loved ones received excellent end-of-life care. That compared with less than 55 percent of the families whose loved ones had kidney failure, heart failure or frailty.
A deeper data dive
That may not seem like much of a gap — until a data on individual factors associated with either high or poor quality end-of-life care are examined.
Between 43 and 50 percent of all the VA patients who died of kidney failure, heart failure or frailty during the four years of the study received palliative-care consultations, compared with about 73 percent of the cancer patients and 61 percent of dementia patients, the data reveals.
Patients with cancer or dementia also had higher rates of do-not-resuscitate orders at the time of their deaths (95 percent and 93 percent, respectively) than did patients with kidney failure (87 percent), heart failure (86 percent) and frailty (88 percent).
Furthermore, about one-third of patients with end-stage renal disease, heart failure and frailty died in a hospital intensive care unit — more than twice the rate of cancer and dementia patients.
Conversely, 43 percent of patients with cancer and 32 percent of those with dementia died in a hospice unit, the hospital setting that families reported as providing the highest level of end-of-life care. For patients with organ failure or frailty, those percentages were in the low 20s.
“These findings suggest a need for greater attention to diagnosis-related disparities in the quality of end-of-life care,” write the authors.
Lifting the fog
“There is often a fog that descends on patients, families, and health care professionals when they are navigating the difficult situation at the end of life,” write a trio of physician-authors in an editorial that accompanies the study. “There is a lack of clarity regarding the trajectory of the illness, the true burdens and benefits of the myriad interventions, and how best to integrate palliative care into the overall care plan.”
“In some illnesses, such as progressive cancer and dementia,” they add, “there may be more clarity than in other conditions,” which can make overall decision-making easier.
Yet, as this study discovered, even when cancer is the cause of death, about 40 percent of the bereaved families did not rate their loved ones’ quality of end-of-life care as excellent.
“It’s important to understand why,” the doctors write.
It’s also important, they stress, that we “continue to strive for parity in our current palliative care interventions for all patients at the end of life both within the VA health system and beyond.”
FMI: Both the study and the editorial can be read in full on the JAMA Internal Medicine website.