During end-of-life care, honoring a patient’s wishes is widely considered a key component of quality care. Patients and families, with all they have going on, may not always be the best at communicating those wishes, especially if those wishes change during the course of the disease. Doctors may have trouble taking those wishes to heart if it’s not what they want personally for their patients. Fortunately, healthcare has developed a number of methods for optimizing communication with patients with terminal diseases. Recently, Nita Khandelwal, MD and her research colleagues asked, “How successful are doctors at honoring the wishes of dying patients?” The Journal of Palliative Medicine recently published the results of their research.¹

How Often Is End-of-Life Care Inconsistent with Patient Wishes?

The research team concluded that one in eight dying patients received care that was not consistent with the patient’s wishes. To determine this, they used data from the National Health and Aging Trends Survey (NHATS). They collected 1,212 responses from close family or friends of people who had died recently. The central survey question of the study asked “During the last month of life, was there any decision made about care or treatment that he or she would not have wanted.” Thirteen percent answered yes.

What Are the Effects of Non-Concordant Care?

One might consider an 87% approval rate from care during a very trying time to be a sign of success. Dr. Khandelwal et al. seemed to focus more on the 13% as an opportunity for improvement. Care that is concordant with patient wishes correlates strongly with overall satisfaction. People in the survey indicating non-concordant care were three to five times more likely to rate the care as fair or poor.

What Improves the Likelihood of End-of-Life Care Being Consistent with Patient Wishes?

Researchers examined demographic factors such as race, age, gender, education, etc. to see if any correlated with concordant care. No demographic factor showed any association with whether the care was consistent with patient wishes.

Researchers found only one aspect of care that improved or decreased the likelihood of concordant care. That aspect was the location of care. End-of-life care delivered at home was significantly more likely to be described as consistent with wishes. Similarly, end-of-life care delivered in a hospital or nursing home proved more likely to be rated as inconsistent with patient wishes. This is probably a reflection of the fact that when doctors take the time to ask patients their wishes, home is much more likely to be the site of end-of-life care.²  Of course, home hospice is specifically designed to improve quality of life for patients at the end of life. It is therefore predictable that home deaths predict higher quality of life, less discomfort, and better psychological wellbeing.³ 

References:

1. Khandelwal N, Curtis JR, Freedman VA, Kasper JD, Gozalo P, Engelberg RA, Teno JM. How often is end-of-life care in the United States inconsistent with patients’ goals of care?. Journal of Palliative Medicine. 2017 Dec 1; 20 (12): 1400-4.
2. Ashana DC, Chen X, Agiro A, Sridhar G, Nguyen A, Barron J, Haynes K, Fisch M, Debono D, Halpern SD, Harhay MO. Advance care planning claims and health care utilization among seriously ill patients near the end of life. JAMA Network Open. 2019 Nov 1; 2 (11): e1914471.
3. Wright AA, Keating NL, Balboni TA, Matulonis UA, Block SD, Prigerson HG. Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers’ mental health. Journal of Clinical Oncology. 2010 Oct 10; 28 (29): 4457.