New study looks at end-of-life decision making for people with intellectual disabilities

October 6, 2017 by Bert Gambini, University at Buffalo
New study looks at end-of-life decision making for people with intellectual disabilities
Credit: University at Buffalo

A new study by researchers at the University at Buffalo provides a groundbreaking look at how advance care planning medical orders inform emergency medical service (EMS) providers' experiences involving people with intellectual disabilities.

Most states in the U.S. have programs that allow to document their end-of-life decisions. In New York, the Medical Orders for Life-Sustaining Treatment form (MOLST) allows individuals to document what measures , including EMS providers, should take near the end of a patient's life.

Studies suggest that this approach to person-centered advance care planning can alleviate a dying patient's pain and suffering, according Deborah Waldrop, a professor in the UB School of Social Work and an expert on end-of-life care. Yet little research on end-of-life decision-making has been done on the growing population of older Americans with intellectual disabilities, which the American Association on Intellectual and Developmental Disabilities defines as a disability characterized by significant limitations in learning, reasoning, problem solving, and a collection of conceptual, social and practical skills.

Waldrop and Brian Clemency an associate professor of emergency medicine in the Jacobs School of Medicine and Biomedical Sciences, authored one of the first scholarly examinations of how pre-hospital providers assess and manage emergency calls for patients who do not wish to be resuscitated or intubated. Jacqueline McGinley, a doctoral candidate in UB's School of Social Work, joined their research team and served as first author for their most recent work.

Through a series of interviews with five different agencies in upstate New York, the researchers asked EMS providers specifically how forms like the MOLST shape what they do in the case of someone with an intellectual disability.

"The best available research before our study suggested that as of the late 1990s, fewer than 1 percent of people with intellectual disabilities had ever documented or discussed their end-of-life wishes," says McGinley. "But with this study, we found that about 62 percent of the EMS providers we surveyed had treated someone with an intellectual or developmental disability who had these forms."

That disparity points to the need to illuminate this understudied area of how people with intellectual disabilities are engaging in end-of-life discussions, according to McGinley.

She says the EMS providers' charge is to follow protocol by honoring the documents, their directions and organizational procedures. The MOLST, as its name implies, is a medical order that providers are professionally bound to respect. Their procedures are identical for all emergency calls involving someone who is imminently dying regardless of a pre-existing disability, the study's results suggested.

But questions remained.

"We heard from providers who wrestled with the unique issues that impact this population, including organizational barriers when working across systems of care and decision-making for individuals who may lack capacity" says McGinley.

There are approximately 650,000 adults age 60 and older in the U.S. with intellectual disabilities, according to Census Bureau figures from 2000. Demographers expect that figure to double by 2030, and triple within the foreseeable future.

Person-centered advance care planning specifically involves the individual in discussions about their health history, possible changes to their current health status and what future options might be available in order to best inform that person's end-of-life decision-making.

The results, published in the Journal of Applied Research in Intellectual Disabilities, suggest that medical orders largely favor efforts to prolong life. This may be due to a reluctance to discuss advanced care planning in this population. Still, this sociocultural context must be strongly considered as future research explores how people with intellectual engage in end-of-life discussions.

Since January 2016, Medicare pays for patients to have conversations with medical providers. In fact, at least once a year, as part of a service plan through the state, people with have face-to-face discussions with their service providers, according to McGinley, who notes the importance of this built-in opportunity to have conversations about serious illness and the end of life.

"What's most important in all of the work we do is knowing that people can die badly," says Waldrop. "We know we can make changes that illuminate some of the uncertainties and improve care for people who are dying. Knowing how forms, like the MOLST, are applied in the field is an incredible step in the right direction."

Explore further: Adults with intellectual disabilities are at high risk of preventable emergency admissions

Related Stories

Adults with intellectual disabilities are at high risk of preventable emergency admissions

September 12, 2017
Adults with intellectual disabilities have more than twice as many emergency hospital admissions and five times more preventable emergency admissions than other comparable individuals.

Confusion on end-of-life forms can cause elderly patients to receive more emergency care than they may have wanted

September 29, 2016
In recent years, physicians' orders for life sustaining treatments (POLST) forms have been seen as an important way to honor the end-of-life wishes of frail elderly or terminally ill patients who cannot speak for themselves.

How to implement Advance Care Planning for patients

September 5, 2017
Emeritus Professor Sheila Payne from the International Observatory on End of Life Care at Lancaster University helped conduct the study commissioned by the European Association for Palliative Care (EAPC) and published in ...

UB researcher explores first-responders' role in end-of-life calls

July 13, 2015
Paramedics and emergency medical technicians (EMTs) are trained to save lives. But they sometimes enter situations where a dying patient's end-of-life wishes contradict their professional code.

Physician addresses stigma against patients and providers with disabilities

October 7, 2014
Nearly 20 percent of Americans have a disability, yet only 25 percent of medical schools include in their curricula caring for people with disabilities. Numerous reports have documented that people with disabilities have ...

Pregnancy risks upped in women with intellectual disability

March 29, 2017
(HealthDay)—Pregnant women with intellectual and developmental disabilities are at increased risk for adverse maternal and offspring outcomes, according to a study published in the April issue of BJOG: An International ...

Recommended for you

India launches 'Modicare', world's biggest health scheme

September 23, 2018
Prime Minister Narendra Modi on Sunday launched the world's biggest health insurance scheme, promising free coverage for half a billion of India's poorest citizens ahead of national elections next year.

Alcohol responsible for one in 20 deaths worldwide: WHO

September 21, 2018
Alcohol kills three million people worldwide each year—more than AIDS, violence and road accidents combined, the World Health Organization said Friday, adding that men are particularly at risk.

Patient-centered visual aid helps physicians discuss risks, treatments with parents

September 21, 2018
A series of illustrations and charts designed as decision aids for parents of children with minor head injuries helped them communicate with emergency medicine physicians and make informed decisions about their child's care, ...

Smart pills dumb down medical care, experts warn

September 21, 2018
Enthusiasm for an emerging digital health tool, the smart pill, is on the rise but researchers at the University of Illinois at Chicago have published a paper in the American Journal of Bioethics that cautions health care ...

Crunched for time? High-intensity exercise = same cell benefits in fewer minutes

September 20, 2018
A few minutes of high-intensity interval or sprinting exercise may be as effective as much longer exercise sessions in spurring beneficial improvements in mitochondrial function, according to new research. The small study ...

China's doctor shortage prompts rush for AI health care

September 20, 2018
Qu Jianguo, 64, had a futuristic medical visit in Shanghai as he put his wrist through an automated pulse-taking machine and received the result within two minutes on a mobile phone—without a doctor present.

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.