End-of-life decision making can involve more complex considerations for hospice patients with intellectual and developmental disabilities (IDD) compared to others.

Advance care and end-of-life planning among IDD patients populations are often under-addressed aspects of their treatments, according to an analysis recently published in the Journal of Pain and Symptom Management.

Hospices supporting patients with IDD need to understand the importance of having patient-centered care approaches that prioritize autonomy, according to the analysis authors.

“Hospice and palliative care clinicians often feel ill-prepared to navigate the decision-making pathways for individuals with intellectual and developmental disabilities (IDD) with serious illness,” the authors told Hospice News in a joint email. “One way to promote autonomy and dignity for individuals with IDD is by understanding supported decision-making and not automatically pursuing guardianship. We want to emphasize the importance of inclusive, serious illness discussions that align with the individual’s values.”

Research authors included:

• Dr. Matthew Castillo, attending physician at NewYork-Presbyterian Queens’ Division of Geriatrics and Palliative Care and program director of its hospice and palliative medicine fellowship. Castillow is also assistant professor of clinical medicine at Weill Cornell Medicine.
• Arlen Gaines, director of social work in palliative care at MedStar Health. Gaines is a licensed clinical social worker and palliative care psychosocial leader. 
• Caitlyn Moore, palliative care nurse practitioner at Jefferson-Abington Hospital, part of the Jefferson Health system, and assistant professor at Thomas Jefferson University’s College of Nursing.
• Dr. Cynthia Pan, chief of New York Hospital Queens’ Division of Geriatrics and Palliative Care Medicine. Pan is also designated institutional officer of graduate medical education NewYork-Presbyterian Queens Hospital and professor of clinical medicine at Weill Cornell Medical College.

Patients with IDD can experience varying limitations in their intellectual functioning and adaptive behaviors, which can affect their ability to navigate daily life.

Decision-making processes that support IDD patient populations have evolved in recent years to focus more on promoting autonomy and inclusion, a result of more innovative care delivery approaches, the analysis found.

Integrating more autonomous approaches has resulted in less restrictive policies regarding alternative and surrogate decision making and guardianship, the authors stated. Recognition is growing of the process of choosing a surrogate decision-maker while retaining autonomy.

Nearly 20 states have laws supporting more autonomous and inclusive approaches that allow for stronger participation in advance care planning among patients with IDD, the analysis found. However, the availability and implementation of these laws has been incongruent across the country.

Seriously and terminally ill Individuals with IDD have unique and often unmet needs, particularly when it comes to advance care planning, the authors indicated. Hospice and palliative care professionals, along with other health care providers, often report feeling “ill-prepared” to address these needs, they stated in the analysis.

Barriers impeding improvement include historical discrimination, inconsistent legal frameworks and lagging health care resources, the analysis found.

Hospice and palliative care providers face complex processes when navigating decision-making for individuals with IDD. Important to consider are state policies for patient capacity assessment, surrogate decision-making and supported decision-making, as well as the statutory regulations, the analysis found.

Ensuring autonomous decision-making involves routinely assessing patients’ capacity, the authors stated. This can take coordination with appropriate health care professionals as outlined by state policies, which can vary regarding appointment of proxy medical decision makers.

“We underscore the need to assess the capacity of these individuals, both for making medical decisions and for appointing health care agents,” the authors told Hospice News in an email. “Also, we highlight how these processes are not standardized across the United States and encourage clinicians to learn about their state statutes.”

Hospices should be aware of Supported Decision-Making statutes in each state across their geographic service regions, according to the authors. State laws can promote decisions centered around a patient’s values, wishes and goals.

Supporting patients with IDD at the end of life also involves awareness of the various government and caregiver institutions at regional, national and state levels, the authors indicated.

“Supported decision-making is an important, emerging approach that promotes autonomy by allowing an individual to make decisions with trusted supporters,” the authors told Hospice News in an email. “Thoughtful advance care planning with persons with IDD upholds autonomy and dignity, and allows individuals to be involved in their health care decisions.”