Despite significant gains in improved access to public places, transportation, and job opportunities for people with disabilities since the enactment of the Americans With Disabilities Act in 1990, the long history of discrimination in the social and medical treatment of people with disabilities is still being felt today. Although advances in medicine have extended life expectancy for Americans overall, people with intellectual disabilities are more likely to have complex and poorly managed chronic medical conditions, limited access to health care, and missed cancer screenings than people without a disability. In addition, a gap in the medical education of health-care providers about the care of people with intellectual disabilities is contributing to substandard quality of care and increased morbidity and mortality in these patients.1
It is also contributing to the stress health-care providers experience in caring for patients with intellectual disabilities. According to a study of oncology nurses in England that measured the perceptions of caring for patients with and without an intellectual disability, study participants said they felt less comfortable communicating with patients with an intellectual disability about their illness, were more reliant on a caregiver for communication, and were less confident that patients’ needs would be identified and met. The study authors concluded that increasing medical training in the health-care needs of patients with disabilities could boost oncology nurses’ confidence in communication and improve appropriate care for these patients.2
Guaranteeing the Health Rights of All Patients
Complicating the medical care of patients with intellectual disabilities, ironically, are laws meant to protect them, especially as they pertain to the transfer of patients’ autonomy to others through guardianship. “Many patients with cancer who can self-advocate choose to limit the amount of end-of-life care they receive after their cancer progresses, and that is their health-care right. We need to makeError loading Partial View script (file: ~/Views/MacroPartials/TAP Article Portrait and Quote.cshtml)
sure people with disabilities and cancer have those same rights,” said Tim Lahey, MD, MMSc, Chair of the Clinical Ethics Program at Dartmouth-Hitchcock Medical Center and Associate Professor of Medicine at The Dartmouth Institute for Health Policy and Clinical Practice in Lebanon, New Hampshire.
“While many state laws give legal guardians the authority to make most medical decisions for people with intellectual disabilities, they do not give guardians the default authority to decline life-sustaining therapies, such as mechanical ventilation,” Dr. Lahey continued. “This can lead to prolonged unpleasant—and unwanted—care at the end of life. It can deprive patients of the peaceful death most of us hope for.”
The ASCO Post talked with Dr. Lahey about the ethical concerns of caring for patients with intellectual disabilities, the danger of unconscious bias in the treatment of these patients, and how to ensure patients’ goals for their end-of-life care are honored.
Withdrawing Life-Sustaining Treatment
What are some of the ethical issues that can arise when caring for a patient with intellectual disabilities?
We want to make sure patients with any kind of disability have equal access to the kinds of services patients without disabilities take for granted. Laws have been passed that are meant to protect these patients from the neglect and systematic disenfranchisement we see in this population and to ensure that they have adequate representation through surrogate decision-makers. That’s good.
However, while most state laws allow legal guardians to make most medical decisions on behalf of people with disabilities, many do not allow surrogates to decline life-sustaining therapies. For patients’ guardians to discontinue unwanted life-sustaining care, they often have to petition a probate court judge, which can take weeks. Once in court, the guardian and physician are asked questions aimed at making the right legal decision, such as how sure the guardian is of the patient’s wishes and what the physician’s best estimate is of a prognosis.
Often, before a judge makes a decision, he or she will ask an ethicist like me to render a judgment on whether the withdrawal of life-sustaining therapy is ethically permissible. This legalistic approach to end-of-life decision-making can create unreasonable expectations of legal guardians and biases the whole system toward the continuation of unwanted treatments at the end of life.
Overcoming Unconscious Bias
There is a long history in the United States of discrimination in the treatment of people with disabilities, including in the medical profession. Please talk about the danger of unconscious bias and the role it plays in the medical care of these patients.
It is common for oncologists to come up with a plan of care that is most likely to give patients a good quality of life for as long as possible. The estimation of what that good quality of life looks like is susceptible to unconscious bias. For example, I might frame what quality of life looks like for me as a person without disabilities, and the enjoyment I get from hiking or listening to music. But if a patient is in a wheelchair or deaf, would I, as a clinician, unconsciously view that individual’s quality of life as inadequate and, therefore, make treatment recommendations informed by that unconscious bias?
This bias is something all clinicians need to guard against. It is important to ask all patients—especially those with disabilities—what gives them pleasure and a good quality of life, what gives life meaning, and how we can help them achieve those goals during their treatment.
How can clinicians determine their patients’ capacity to understand their disease progression and ability to decide on their end-of-life care goals?
Physicians routinely make judgments about the decisional capacity of their patients, and determining whether an individual has adequate capacity to make decisions is an inherent aspect of all clinician-patient interactions. When it comes to patients with an intellectual or communication disability, oncologists may feel they are not sufficiently expert to assess patients’ ability to make their own health-care or end-of-life decisions. But even if there are cognitive limitations or communication challenges, it is incumbent upon clinicians to try to get the patient’s opinion and to feel out what the patient considers to be a good quality of life.
Even if there are cognitive limitations or communication challenges, it is incumbent upon clinicians to try to get the patient’s opinion and to feel out what the patient considers to be a good quality of life.— Tim Lahey, MD, MMSc
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For example, oncologists might ask their patients about what activities they enjoy, what their understanding is of their medical situation and the benefits and risks of treatment, and what their opinion is of the proposed treatment. We always want to make sure that even if a patient has limitations in their mental capacity to make critical medical decisions, we don’t pretend that capacity is entirely lacking.
It’s also important to ask the patient’s guardian about his or her understanding of the medical situation and opinions regarding the way forward. This way the oncologist can get the fullest picture of what the patient wants and what the guardian thinks the patient wants.
The American Association on Intellectual and Developmental Disabilities (aaidd.org) has a position statement on medical care at the end of life, which includes the need to begin discussions about this care before the last 6 months of life and takes into account the type of care the patient would like. Many people with intellectual disabilities are able to express their preferences and make crucial medical decisions with the right accommodations, such as simplifying language to explain procedures and using visual aids or assistive technology devices. These aids may include pictorial Likert scales to assess patient symptoms or picture boards to ask about cherished activities if the patient is nonverbal.
Avoiding Unwanted End-of-Life Care
How can oncologists help patients avoid unwanted, prolonged, and futile treatment at the end of life and ensure patients’ surrogates honor those wishes?
To avoid potential legal pitfalls, patients’ preferences should be made clear in living wills, health-care proxies, powers of attorney for health care, and advance directives. If guardianship is necessary, it should be tailored to the patient’s needs and preferences. and guardians must be committed to the well-being of the patient and empowered to carry out those preferences.
In many states, boilerplate guardianship agreements do not specifically give guardians the right to limit end-of-life care. To avoid potential legal entanglements, patients and guardians should consider creating a guardianship document that spells out the patient’s wishes for delimitation of life-sustaining therapy if that is what the patient wants. Social workers and other providers can help make sure this happens. That way, oncology teams can find a way to make sure they provide the best care possible, which always means care the patient really would want. ■
DISCLOSURE: Dr. Lahey reported no conflicts of interest.
1. Harmon D: Caring for the adult with intellectual disabilities in the acute care setting. University of Massachusetts Amherst; Doctor of Nursing Practice Projects, 2017. Available at https://scholarworks.umass.edu/nursing_dnp_capstone/102. Accessed June 7, 2018.
2. Flynn S, Hulbert-Williams L, Bramwell R, et al: Caring for cancer patients with an intellectual disability: Attitudes and care perceptions of UK oncology nurses. Eur J Oncol Nurs 19:568-574, 2015.