While medical ethics are important throughout any patient’s life, the complexities of sound ethical decision-making tend to be amplified in both pediatric and geriatric patients.
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“You can think about this concept as a bell-shaped curve, with autonomous decision-making at the top of the bell and extremes on either end,” says Eric D. Kodish, MD, Chairman of Cleveland Clinic’s Department of Bioethics and a pediatric hematologistoncologist.
“On the left side of the curve, you have children, who are completely dependent on us when they are born but eventually develop into autonomous beings. On the right side are geriatric patients, many of whom become completely dependent before they die.”
Dr. Kodish’s grandfather, who lived to be 97, referred to this phenomenon as “once a man and twice a child,” a phrase echoing Shakespeare’s Hamlet.
Consent vs. assent and protecting a child’s future are key principles in facilitating sound decision-making in pediatrics.
“At the core of pediatrics is the fact that a child is not a small adult,” says Giovanni Piedimonte, MD, Chairman of Cleveland Clinic Children’s. “In the area of ethics, pediatrics has a series of core values that are profoundly different, starting with the fact that children can’t make their own decisions. A concept that is gaining more attention is the fact that we can obtain assent from pediatric patients, but not consent.”
Pediatricians help younger children learn about making healthcare decisions by including them in the conversation about what needs to happen, working toward agreement from the child.
“For example, a clinician may ask a child if he or she would prefer to receive a vaccination in one arm as opposed to the other, without implying a choice about whether to receive it,” explains Kathryn Weise, MD, MA, a pediatric medical ethicist in the center.
“If the family wants the child vaccinated, we wouldn’t fool the child into thinking he or she can refuse.”
Ethically and philosophically speaking, parents also cannot provide consent for a child’s treatment. “They can only provide ‘parental permission,’” Dr. Kodish says. Dr. Weise adds that “predicting what a child’s future might hold medically can be complicated because of children’s resilience. That degree of uncertainty is a huge factor in pediatric decision-making.”
Since it’s impossible to predict children’s future values and preferences, Dr. Kodish says treatment decisions should ensure “a child’s right to an open future,” a term popularized by legal philosopher Joel Feinberg.
Financial considerations are gaining more attention from ethicists in pediatric decision-making. Any family will be impacted by the financial and emotional costs of complex treatment. These factors are especially important to consider when additional treatment has little chance for success.
“While we never want to withhold treatment on the basis of cost alone, as part of transparency parents and adult patients should receive guidance about how a decision either way could affect the family, including other children,” says Dr. Weise. “This type of conversation can be difficult but is important for informed decisions about goals of care. It is part of the overall picture to help the family decide whether they should go forward.”
In geriatric medicine, clinicians should assume that patients are able to make their own medical decisions — including ethically challenging ones — unless evidence of diminished capacity exists.
“When older adults refuse treatment and are cognitively intact, then we respect their wishes,” says Barbara J. Messinger-Rapport, MD, PhD, Director of Cleveland Clinic’s Center for Geriatric Medicine. “If they refuse treatment and have dementia, it becomes an ethical issue.”
It is always helpful when geriatric patients with diminished decision-making capacity have made their wishes known through a formal advance directive such as a living will, or via a surrogate decision-maker such as a spouse or other person with healthcare power of attorney. Another layer of complexity arises when the surrogate decision-maker also has cognitive impairment.
In contrast to children, a lifetime of decision-making provides a frame of reference for older adults. “We try to honor patients’ autonomous decision-making authority to represent what their wishes would have been in that situation,” Dr. Weise says.
For example, has the patient who is refusing testing and treatment taken medications regularly and gone to the doctor every year for preventive care? “When an older adult is not choosing in accordance with prior choices, then mood and cognitive ability should be assessed,” says Dr. Messinger-Rapport.
Whether patients are 7 or 77 years old, each situation is unique. The medical ethicist’s role is to guide the medical team and the family in considering the benefits and burdens of each possible scenario.
It’s important to look both backward and forward in time — backward to guide decisions that are true to what the patient with prior capacity would have wanted, and forward to protect the patient’s future and/or to minimize suffering.
As Dr. Piedimonte says, “The medical ethicists we work with are absolutely critical to making sure that our practices are ethically sound and in the best interest of the patient.”