Working in the disability field for many years, Christina N. Marsack-Topolewski, PhD, LMSW, saw firsthand few were prepared for aging, serious illness, and the end of life. “As a country, we often forget that individuals with childhood-onset disabilities age and eventually need planning and care tailored to support them in the later phases of life,” says Marsack-Topolewski, associate professor of social work at Eastern Michigan University.
Aging and intellectual and developmental disabilities (IDD) often are seen as “separate entities,” explains Marsack-Topolewski, who co-authored a paper on this topic. (Learn more about this work here.) She and a colleague offered two case studies in which high-quality end-of-life care was provided to adults with IDD. “There were profound moments of care and compassion rendered by family members, staff, and administrators to ensure these individuals died well and were remembered after their deaths,” Marsack-Topolewski says.
Most healthcare providers will encounter a person with IDD at some point during their careers. “It is essential that they receive ongoing training on how to provide effective and equitable care to individuals with disabilities,” Marsack-Topolewski says.
Individuals with IDD often receive poor end-of-life care due to several factors, according to Jeanne Kerwin, DMH, HEC-C, a clinical ethics and palliative care consultant. Some adults with IDD cannot express preferences regarding avoiding non-beneficial medical interventions. “Those individuals with the capacity to express their fears and desires about medical interventions are frequently not given the opportunity to document their wishes, or to appoint someone they trust to make decisions for them,” Kerwin adds.
Legally appointed guardians might be fearful about discontinuing life-sustaining interventions with little benefit and great burden. Individuals living in residential facilities or group homes often have limited access to hospice end-of-life care, and experience the dying process in hospitals or nursing homes surrounded by strangers.
Ethicists can help develop hospital policies to ensure ethical end-of-life care for IDD patients. Kerwin says hospital policies should specify that the wishes of IDD patients should be known. Patients should have access to all medically appropriate care, without bias, and have the right to avoid medical interventions they wish to refuse. Leaders should ensure these patients are not undertreated during a pandemic or other overwhelming circumstances for emergency and critically needed care.
Whenever an individual with IDD is admitted to a critical care area without a designated healthcare proxy to make medical decisions, ethics can be helpful. The same is true if the individual arrives with a surrogate decision-maker who needs help.
“Clinical ethics consultants can provide an added level of protection for patients to receive end-of-life care concordant with the individual’s preferences and prognosis,” Kerwin says.
Kyle Sue-Milne, MD, clinical assistant professor in pediatrics at University of Alberta, says ethics consults are appropriate in certain situations. For instance, when there are multiple possible treatment routes and no clear path ahead offers the best risk-benefit balance. “What’s truly ‘best interest’ is subjective, with many different confounding factors,” Sue-Milne says.
Factors such as religion and spirituality also can come into play. “When there are so many difficulties in weighing benefits vs. risks, having additional opinions from colleagues, including ethicists, can be helpful,” Sue-Milne says.
Ethicists also can help when caregivers, family members, and/or the patient are requesting something illegal, such as euthanizing a child with a complex medical syndrome. When there are differences in opinions, perhaps between clinicians and caregivers/family/patient, among different clinicians, or among different family members, ethicists can intervene. “Some caregivers push for maximal interventions that the clinicians feel may cause more harm than benefit, just to give more time as they pray for a miracle,” Sue-Milne adds.
This can lead to conflict between the medical team and the family, or conflict among clinicians. In those difficult cases, an ethics consultation can be helpful. “Ethicists are able to look through the literature for case law and examples of similar situations,” Sue-Milne explains.
Policies could recommend automatic ethics referrals for some patient presentations, such as patients with minimal neurologic activity after traumatic brain injury. “The ethicist can help ensure that decisions are being made in the patient’s best interest, and not just for the convenience of caregivers or the hospital,” Sue-Milne says.
Policies should specify that the wishes of these patients should be known. They should be able to access all medically appropriate care, without bias, and have the right to avoid medical interventions they wish to refuse.
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