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End-of-Life Care for Aging Adults With Intellectual and/or Developmental Disabilities

By Anna Panzo, MSW, LCSW

One of the advantages of modern medicine is the ever-evolving improvement in health care and medical treatments. With these advances, many people are living longer and healthier lives, and consequently, the population of older adults around the world is increasing. Medical improvements have prolonged life expectancy not only for the general population but also for aging adults living with intellectual and/or developmental disabilities (IDDs).

As the overall number of older adults around the world and in the United States rapidly grows, more attention is being given to end-of-life care for aging people. Regardless of an individual’s circumstances, end-of-life care requires sensitivity, compassion, and a respect for life, dignity, and autonomy. However, for aging adults living with IDDs, end-of-life care can become even more nuanced and complex.

Three individuals at the University of Buffalo explored some of these nuances and complexities through researching the perspective of emergency medical services (EMS) providers. The study was a collaboration among Deborah Waldrop, PhD, a professor and associate dean for faculty development at the School of Social Work; Jacqueline McGinley, MSW, a PhD candidate at the School of Social Work; and Brian Clemency, DO, MBA, FACEP, FAEMS, an associate professor and director of the EMS fellowship program at the Jacobs School of Medicine and Biomedical Sciences. Waldrop, McGinley, and Clemency specifically explored the perspectives of EMS providers who responded to emergency calls for aging adults with IDDs who had a terminal illness. In March 2017, the Journal of Applied Research in Intellectual Disabilities published their study, “Emergency Medical Services Providers’ Perspective on End-of-Life Decision Making for People With Intellectual Disabilities.”

Their research responded to needs highlighted by the increasing number of people with IDDs who are living to an advanced age. It intended to explore how the EMS providers’ end-of-life care decision making is informed by medical orders, by studying the diverse contexts for these decisions. According to Waldrop and McGinley, “We hoped to offer a meaningful contribution to researchers and practitioners by exploring how EMS providers respond to calls involving people with IDD near life’s end.” Their study has added to a growing body of research that emphasizes the need for person-centered end-of-life care planning. It also raises important questions on how autonomy and the dignity of life can be preserved for people with IDDs who are at the end of their life. Furthermore, it presents key areas for improvement and implications for future research and practice.

The study was conducted in New York state, where providers use documents such as advance directives, nonhospital do-not-resuscitate orders, and medical orders for life-sustaining treatment to determine and document patients’ end-of-life wishes and care. In this exploratory-descriptive and mixed-methods study, the researchers used qualitative and quantitative analyses of surveys and in-depth interviews to shed light on the decision-making processes of EMS providers who are responding to a call for a person with IDDs who has a terminal illness. This study found that EMS providers encountered a number of unique and distinct challenges when treating people with IDDs who are at the end of their life. These challenges held ramifications for the quality of end-of-life care provided.

Organizational Barriers
The first challenge EMS providers faced was organizational barriers. EMS providers respond to patients in diverse settings—family homes and residential facilities. EMS responders found that most patients living in residential facilities had some type of documentation containing their end-of-life care preferences. However, when EMS providers responded to an emergency call, 27% of the study participants encountered barriers such as missing documentation outlining the patient’s end-of-life care preferences, staff who were unfamiliar with emergency protocol, or communication challenges with agency staff. According to McGinley and Waldrop, “These challenges can impact the decisions that are made and the care that is delivered to people with IDD near life’s end.” Overcoming these challenges would be an important part of facilitating enhanced end-of-life care to aging people with IDDs in residential homes. In order to improve care and overcome some of these organizational barriers, the researchers indicate, “The EMS providers who participated in the study … suggested the need for increased interdisciplinary training and care coordination.”

Autonomy Issues
In addition to the organizational barriers encountered by study participants, several participants also encountered challenges with autonomy. Participant comments highlight the challenges of providing person-centered care that is balanced by outside guidance from families or other individuals involved in the person’s care. They note that many individuals, including family members, social workers, or case managers, could be involved. One participant quoted in their study questioned whether the decisions made are what the patient really wants. To this point, per Waldrop and McGinley, “Several participants raised questions about whether the medical orders represented the best interests and wishes of the person with IDD. This study builds upon the available literature, that suggests that issues of consent and capacity are uniquely impactful for this population and thus warrant the attention of families, providers, ethicists, advocates, and researchers.”

The questions raised by the study participants are particularly pertinent to social workers, who may often be providing care for aging adults, and whose Code of Ethics embraces such principles as respect of self-determination, dignity, and worth. In their study, the researchers reference the American Association on Intellectual and Developmental Disabilities’ (AAIDD) 2012 position statement, “Caring at the End of Life.” As noted in the article, this position statement includes principles of “dignity, respect for autonomy, life, and equality.” The statement supports the inherent dignity and equality of the lives of persons with IDDs, and provides guidelines as to how caregivers can strive to ensure that persons with IDDs’ end-of-life care wishes are honored and documented. It indicates that “caregivers should act to promote and protect the life of a person with IDD,” within the best interest standard, and resources should be “appropriate, sufficient, and available without discrimination.” The position statement from the AAIDD could enhance the practice of social workers who serve aging adults with IDDs by providing more in-depth recommendations and parameters to their care.

In the study, it was clear that the EMS providers sought to honor the end-of-life care wishes of the patients they were serving. The researchers commented that “Both the EMS providers who participated and those they observed during these calls favor the preservation and protection of life.” However, several participants (22.9%) raised questions about the best-interest standard. The researchers wrote that one person asked, “How many times should you put that person through intubation and hospital stays and ventilators … before you start sitting there saying, ‘We’re torturing these people’? That is a lot of trauma.” The AAIDD position statement itself gave some exclusions to when the preservation of life falls outside of the best-interest standard that includes treatments that “impose excessive pain and suffering,” or are ineffective and would only increase suffering and prolong the dying process.

Ethical Questions
Both the concerns of the study participants and the exclusions highlighted by the AAIDD raise critical ethical questions about end-of-life care directives for persons with IDDs, such as how providers can define a person-centered, best-interest standard for aging adults with IDDs. When asked to comment on how EMS providers and residential agencies may have to adapt their approach to end-of-life care and decision making to the growing number of aging adults with intellectual abilities, the researchers note that the number of people with IDDs living to advanced age is projected to double by 2030. They add that most of these individuals live with family caregivers who are also aging. Furthermore, according to the researchers, “One of the most important first steps is for legislators, providers, and families to acknowledge these shifting demographics and develop comprehensive policies and services for assuring a high quality of life through the duration of serious illness and at the end of life.”

As America’s demographic shifts to include a growing number of aging adults with IDDs, providing high-quality end-of-life care that upholds their wishes and respects their dignity should be paramount. The study at the University of Buffalo highlights some of the unique needs and challenges facing the care providers who serve this vulnerable population. McGinley, Waldrop, and Clemency’s study gathers important information from those who provide emergent medical care, and explores areas in need of growth and improvement within the profession. However, there is more work to be done. McGinley and Waldrop indicate that “The voice of people with IDD has often been absent. It is thus essential that future research engage people with IDD to share their experiences so that they can inform the course of this emergent area of research and practice.” McGinley, Waldrop, and Clemency’s research gives an important voice to those who provide end-of-life care; the next step is to hear from those who receive it.

— Anna Panzo, MSW, LCSW, is a social worker and writer who lives in Philadelphia.