Adults with severe intellectual and developmental disabilities (IDD) often present to EDs with complex medical needs. Their advance care directives are complex, too. “This is an often-overlooked situation,” says Gavin Enck, PhD, director of clinical ethics for Oklahoma-based INTEGRIS.

The advance directive may indicate that full resuscitation measures are desired. However, because of the patient’s disabilities and conditions, the directive may not call for artificial nutrition and hydration measures. This can confuse the clinical team.

“It is important to remember that from lacking the ability to make one’s own healthcare decisions, it does not follow that a person has no activities, events, and/or interactions that cause pleasure or discomfort,” Enck explains. For example, a patient with IDD may not want artificial hydration and nutrition because he or she found pleasure in eating. Another IDD patient might only tolerate interactions with certain caregivers and otherwise becomes agitated. “Adult IDD patients are often marginalized and have no surrogate decision-maker or advance care planning,” Enck adds. Physicians are put in the uncomfortable situation of determining whether the harms or burdens of interventions outweigh the benefits for this particular patient. Other challenges include the following:

  • The process of stabilizing a patient may result in greater discomfort and harm to the patient.

For example, the advance care directive indicates the patient would want CPR, but she is frightened by strangers. “CPR is an invasive measure performed by strangers, heightening her fear and agitation,” Enck notes.

  • If the IDD patient is stabilized and admitted to the hospital, caregivers may feel conflicted in honoring the advance care directive.

This is because to caregivers, it is not always evident why it is appropriate to provide CPR and other invasive interventions to save the patient’s life, yet the use of artificial hydration and nutrition to sustain that patient’s life is inappropriate, Enck observes.

“Each of these challenges raises an ethical dilemma,” he says. Clinicians must balance ethical obligations to respect a patient’s documented preferences and avoid causing undue harm to patients.

The complexity of this situation makes real-time responses difficult. A formal ethics consult is not always realistic in an emergent situation. Enck says ethicists can help by “proactively developing policies, implementing clear processes, and reaching out to resources in the community for assistance.” It is not enough for caregivers to understand and recognize the importance of advance care planning. They need to consider IDD patients specifically.

  • Even when IDD patients present with advance care directives, the information is not always easily accessible.

“Depending on the electronic medical record program, there are ways for advance care directives or IDD patients to be flagged upon admission,” Enck notes.

The authors of a recent white paper focused on end-of-life planning for people with IDD.1 “The hope is to provide more resources for folks earlier in their care trajectory as a way of respecting and honoring their personhood, their goals, values, and preferences,” says Virginia L. Bartlett, PhD, an advisory committee member for the group that authored the paper. “Ethicists do get requests to support patients, their families, and/or legal guardians and the clinicians caring for them.”

Regional centers, long-term care facilities, hospitals, and families all come into play. “All serve as interconnected points of care, each with a different focus, resources, and commitments,” says Bartlett, an assistant director of the Center for Healthcare Ethics at Cedars-Sinai Medical Center in Los Angeles.

Some patients within this population never had capacity to form values. “We are obliged to bring our ‘best interest’ assessment to medical decision-making for them,” argues Kathy Johnson Neely, MD, MA, medical director of the medical ethics program at Northwestern Memorial Hospital in Chicago.

Others with IDD could establish values, but this is not always included in the decision-making process. “We often give up too readily on patients who do not have capacity yet protest the plan of care. We must work diligently to bring their voice to the table,” Neely offers.

There are many patients whose cognitive impairment confounds the goals and plan of care clinicians plan for them. Careful attempts at persuasion from clinicians or cajoling from loved ones does not always suffice. “It might be inhumane to continue dialysis for an inconsolably terrified patient or impose a stem cell transplant on a confused patient,” Neely cautions.

At Northwestern Memorial, a cadre of volunteers trained to become advance directive experts. They are pageable during business hours and help patients name and document their choice of decision-maker as healthcare power of attorney. This, along with a Physician Orders for Life-Sustaining Treatment form, is scanned into the EMR. A patient without representation also can make their specific wishes known.

“Our medical ethics program has enlisted social work to consult us on every patient for whom our institution is seeking guardianship,” says Neely, adding that ethics coaches both the primary care team and the new guardian in shared decision-making. “We are tracking this effort to see whether this intervention will promote more timely, patient-centered decisions.”

One of the more common ethical issues that disabled patients face at the end of life is healthcare providers honoring their advance care wishes, says Kevin Rodrigues, BA, MTS, PhD(c), a clinical ethicist at University Health Network’s Toronto Rehabilitation Institute.

Patients with cognitive impairments may not have engaged in advance care planning discussions because of communication issues or assumed incapacity. “The latter assumption is ethically significant,” Rodrigues says.

Cognitive impairments, developmental disabilities, and communication barriers do not mean a person is incapable of making medical decisions. “Thus, otherwise autonomous people may not have their end-of-life wishes honored due to incorrect assumptions,” Rodrigues offers.

Disabled patients may struggle with access to palliative care and pain management, more so than the general population. “Disabled persons often face general accessibility issues societally, and this is no different at end of life,” Rodrigues observes.

Even if a substitute decision-maker provides consent on the patient’s behalf, clinicians “still ought to probe to gain an understanding of the patient’s applicable values and beliefs,” Rodrigues says.

A good process for documentation, “including how to have wishes accessible in the medical chart, help prevent wishes from being overlooked,” Rodrigues adds.


  1. Coalition for Compassionate Care of California. Thinking ahead matters: Supporting and improving healthcare decision-making and end-of-life planning for people with intellectual and developmental disabilities. Updated January 2015. Available at: Accessed Aug. 6, 2019.