End-of-Life Care: Whose Decision Is It Anyway? A Case Study in an Assisted Living Facility

Dear Editor:

Should transfers to the emergency department occur when it is the stated wish of the patient not to be transferred and there is no obvious emergency indication? Ethical end-of-life (EOL) care must respect patient autonomy and advance directives. ¹ Residents of assisted living facilities (ALFs) tend to view the facility as “home” and, therefore, as an appropriate place to die, ² and staff cite resident preference as a key factor in any admission decision. ³ Nevertheless, concerns over legal or regulatory liability can obfuscate the transfer decision, as can stress and poor communication, leading to unnecessary hospitalizations. ⁴ Those guiding EOL care must balance advance directives, state Department of Health (DOH) policy, ALF practice, and the attending physician's opinion. These competing forces invite conflict, particularly when the patient lacks decision-making capacity.

Peter was a 93-year old widowed white male admitted to an ALF in 2011 for assistance with medication management and activities of daily living. Due to worsening dementia and congestive heart failure, he was admitted to an enhanced unit in 2014. There, Peter experienced repeated minor falls because of physical deconditioning. Peter's family and physician completed a Medical Orders for Life-Sustaining Treatment (MOLST) form indicating that Peter should receive comfort care; the section entitled “Future Hospitalization/Transfer” was completed to order “do not send to the hospital unless pain or severe symptoms cannot otherwise be controlled.” Nevertheless, Peter experienced eight transfers deemed unnecessary by his physician. After X-rays, catheterized urine specimens, CT scans, and blood work, he was released each time with no injury found.

The DOH and the ALF differed in their interpretation of state regulations regarding a “medical assessment” after an unobserved fall [NYCRR Title 18 (487.7(d)(6))]. Regulations do not specify who is qualified to perform a medical evaluation nor the timeframe for the evaluation. The ALF believed regulations required a transport for “medical evaluation” unless the patient was competent to refuse, whereas the DOH deferred to the ALF given Peter's advanced dementia. The frequent transfers may have raised concern that Peter's level of care was inappropriate and the DOH threatened an “endangerment violation.” To prevent the violation, the ALF responded by evicting Peter, costing his family more than $10,000 in additional care while awaiting placement in hospice. The family feels that the eviction was arbitrary and unfair, yet the Department's vigorous stance to protect a vulnerable patient is understandable. Peter expired peacefully on August 27, 2015.

In a perfect world, EOL care decisions would respect patient wishes and be inviolate. Patients without obvious injury or severe pain should have alternative medical evaluation methods available according to their wishes with the presumption of beneficence. Regulators desire to protect patients, but lack of personal connection may make decisions appear anything but fair. To assure patient safety and regulatory compliance, one solution may be a combination of emergency medical services (EMS) response with telemedicine triage. This way, EOL care in regulated settings can be accomplished following the doctrine of medicine—first do no harm.