End-of-Life Care for Adults With Intellectual Disabilities

Teresa Moro and Jacqueline McGinley


Case Example

Sophia is a 55-year-old woman with intellectual disability (ID) who also has congestive heart failure. Sophia has lived in the same small community agency residence with three other adults tor the last 15 years. She initially moved in after her father died because her then 70-year-old mother could not care tor Sophia at home. While there is frequent staff turn-over, two female residential staff caregivers are close to Sophia. One woman has been at the home for 16 years and another woman has been there for three years. These women support Sophia’s physical and emotional needs, and they think of her as part ot their families. After Sophia’s mother died, these women took her to the funeral and have helped her grieve the loss.

These women were the first to notice when Sophia began coughing frequently and became more confused. They took Sophia to her doctor appointments, and explained to her what was going on and asked her what she wanted to do. According to her cardiologist, Sophia would continue to get sicker and need more help. Sophia is becoming more often confused and no longer attends day program.

The issue of where to care for Sophia at the end of life has become a crisis because she does not have an advance care plan and there is no existing agency protocol about caring tor residents at the end of life. Sophia wants to stay in her home. The staff members want to care for her in her home because they feel she will be most comfortable surrounded by her agency family. The agency administrators have said that they cannot provide the staff with any additional support and that Sophia may be moved out of her home due to potential liability and a lack of resources. There is the possibility of bringing in home hospice, but none ot the local agencies have any experience supporting people with ID.

If Sophia is transferred out of the community agency residence, she will either have to go to a family caregiver’s home, an intermediate care facility for adults with developmental disabilities (1CF/DD), a nursing home, or an in-patient hospice. Everyone involved in her care is concerned about Sophia being moved because transitions have always been difficult for her. Sophia’s brother/guardian is angry because he assumed that once Sophia was in the community agency residence she would be cared for forever. Her brother hopes that she can stay in the agency, because he is 67-years-old and does not have the resources to care for Sophia in his home which is four hours away. The nearest ICF/DD with an open bed is two hours away, so neither her agency family nor her brother/guardian will be able to visit. Local nursing homes have no experience caring for people with ID.

Broad Overview

Increasingly, people with ID in economically advanced nations are living long enough to acquire the same chronic and life-limiting health conditions, e.g. cancer and cardiovascular disease, as the general population (Hosking et al., 2016; Stankiewicz, Ouellette-Kuntz, Mclsaac, Shooshtari, & Balogh, 2018; Tuftrey-Wijne et al., 2016). Due to the increased likelihood of acquiring these conditions caregivers in community agencies and family homes need to plan for what happens when adults with ID age, experience advanced illness, and die. End-of-life decision making for adults with ID is complicated because they often do not have any advance care plans and have historically been omitted from conversations about healthcare and end-of-lite decision making (Kirkendall, Linton, & Farris, 2016).

End-of-life care is that which is provided when death is soon anticipated because an individual has a progressive and irreversible condition from which recovery is not expected and/or withdrawal of life- sustaining treatment is an option (American Association of Intellectual and Developmental Disabilities [AAIDDJ, 2012). Quality end-ot-life care must include physical comfort and emotional support for the person who is dying; emotional support for the family or caregivers; open communication; shared decision making; and timely access to care (Teno, 2005). Conversely, adults with ID encounter healthcare disparities and multiple systemic barriers to quality end-of-life care (Friedman, Helm, & Woodman, 2012; Northway et al., 2018).

Service systems are often ill-equipped to adequately meet the needs of adults with ID at the end of life (Burke & Heller, 2017). Adults with ID may experience poor medical care, including a lack of pain recognition or proper symptom management (Tuffrey-Wijne et al., 2016). Some adults with ID are overtreated while others do not receive any medical intervention for highly treatable conditions, such as urinary tract infections, that become worse when left untreated (Hosking et al., 2016; Hunt et al., 2019).

As their care needs increase, adults with ID may experience transitions into skilled care in hospitals, hospices, and nursing homes where the healthcare providers generally have minimal experience or training in supporting them (Havercamp et al., 2016). If adults with ID remain in their community agency residences, there is often no protocol, training, or resources available to staff for providing end- of-life care (Bigby, Bowers, & Webber, 2011). In the United States, some community agencies run ICF/ DDs, which offer 24-hour skilled nursing care. Not all agencies have this level of care, and, even when they do, a resident can only be moved from a community residence into an ICF/DD if there is an available bed. If there are no tree beds or the agency does not have an ICF/DD, then the transition involves leaving the agency and entering another system of care, such as a nursing home.

The literature on end-of-life care for adults with ID in nursing homes is limited; however, there is evidence to suggest that adults with ID are admitted to nursing homes at an earlier age and remain in them longer than members of the general population (Kerins, Price, Broadhurst, & Gaynor, 2010). Adults with Down syndrome may also experience more relocations and are more likely to die in a nursing home than other peers with ID (Patti, Amble, & Flory, 2010). Staffin nursing homes lack training in caring for adults with ID and may not understand their unique needs and communication styles.

Overall, the systemic barriers to quality end-ot-life services for adults with ID have contributed to a piecemeal system that relies heavily on untrained agency staff or family caregivers (McGinley, 2016). In the long-term, it is imperative that practice professionals and scholars determine how and where to best focus care interventions and policy change. However, it is also important to focus on ways to improve end-of-life care for adults with ID in the here and now.

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