My grandfather did not want to die. From hospital to home, back to hospital and finally to hospice, he angrily fought against the realities of the cancer that would eventually end his life.
Many years before his battle with cancer, I remember sitting in the car with him, discussing assisted deaths. I was home for break from college, where I had just finished taking an ethics class. Assisted death in the elderly and terminally ill was the topic that stuck with me, and I asked him about it. He adamantly supported the notion, saying that he believed a person should not have to experience undue suffering if they don’t want to. Some time later, watching him suffer so greatly, I wondered if he would have preferred a different, less prolonged, exit from the world.
The conversations we have over end-of-life decisions can be awkward and scary. “How do you want to die?” is not a question easily discussed. Yet, clear directives can make the process much smoother and less fraught with pain and fear for patients and their families.
Practitioner Orders for Life-Sustaining Treatment (POLST) are binding protective orders that allow patients to advocate for themselves, directing medical personnel about decisions related to life-sustaining care including CPR and feeding tubes.
Unlike advance directives, which dictate a proxy to advocate for a patient’s care in the event they are unable to do so, POLST forms are strict actionable orders for medical teams that elucidate very clearly what can or cannot be done to keep a patient alive.
“Without a POLST form, emergency medical personnel are required to provide every possible medical treatment to sustain life,” says Rachael Telleen, advance care planning advocate for JourneyCare and a member of the leadership team of the POLST Illinois Task Force, an organization of clinicians and other interested parties that works to guide the acceptance and implementation of POLST forms in the state. “POLST is about patient self-determination to advocate for themselves their most personal wishes regarding their end-of-life experience. It is an act of autonomy, control and dignity, which is driven by their own personal decisions.”
POLST forms are recommended for patients in the late stages of life and/or illness, typically when death is expected within a year. The forms are voluntary and are designed to educate patients on their options with regard to life-sustaining care, allowing them to consent or opt out of a range of services.
“A completed POLST form is an end point in a larger process of engaging patients in discussions about the [kinds] of medical care they would want to receive in situations where they may not be able to communicate their wishes directly,” says Thomas Anderson, MD, president of the Illinois State Medical Society. “It is a tool that can facilitate discussions between patients and physicians, and it helps ensure that patients stay in control of their healthcare in the final stages of their life.”
Patients make the decisions when they are clearheaded, before fear and loss of control set in. Do they want to be intubated if necessary? Would they want a feeding tube? Do they prefer comfort measures only?
In my grandfather’s case, a POLST form may have helped him suffer less at the end. It also may have made things easier on family members who had to continually make decisions on his care that, although well-intentioned, extended his painful battle.
“The key to the POLST paradigm is the conversations that are encouraged between healthcare workers, the patient and the family,” Telleen says. “When a patient is at the point of needing life-sustaining treatment, families are often left to guess at medical wishes. Understandably, many err on the side of assuming the patient would want to do anything they could to survive, even when such an outcome has already been deemed unlikely.”
POLST advocates are working to spread awareness and acceptance of the forms among physicians, patients and families. “We need to do a lot more work to make sure that the whole POLST process is being used appropriately,” Anderson says, adding that education and support are the keys to making the POLST form a widely recognized tool for navigating emotional end-of-life care.
Illinois residents can find the POLST form in English and Spanish on the POLST Illinois website, polstil.org.
Originally published July 11, 2016
Erin O’Donnell is a freelance health and science writer, parent, and graduate of Northwestern’s Medill School of Journalism. Walks by Lake Michigan make her happy.