What should doctors do when ill caregivers can't perform their duties?

By ALICIA GALLEGOS
amednews.com
10/24/2011

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In a custody dispute that has reached the Supreme Court of North Carolina, a judge has ruled that children of a cancer patient must live with their father, in part, because of their mother's Stage IV breast cancer diagnosis.

The case poses ethical questions for doctors about whether medical conditions are a reason to take away a parent's custody rights. Legal experts say physicians have a key role in determining whether a caretaker's illness places children and other dependents at risk of being neglected.

A related question is whether physicians should step in when they see family members unable to care for elderly patients. No matter the generation, what should doctors do if they see patients put at risk if caregivers aren't up to the task? How should doctors approach these situations, and how can they make sure that patients have the right support systems in place?


"We do sometimes see that because of the severity of a condition, people have difficulties fulfilling their family roles," said internist Joshua Hauser, MD, an assistant professor of medicine and palliative care at Northwestern University Feinberg School of Medicine in Chicago. He practices at the Palliative Care and Home Hospice Program at Northwestern Memorial Hospital.

"The first choice by far is to help supplement them with other services and other family members, but one needs to think of whose interest we're trying to serve. In the case of a child, it's the child's interest we're trying to serve."

In the North Carolina case, Durham resident Alaina Giordano, 37, lost custody of her two children in April. Her husband, Kane Snyder, argued that he should be the primary caregiver because, among other things, Giordano's breast cancer was spreading and her life span was uncertain, according to court documents. Also in dispute was whether Giordano was forgoing traditional medicine for alternative treatment and whether she was able to care for the children while being treated.

During one occasion, Giordano was admitted to the emergency department and did not have an immediate guardian for the children, court records show. To prevent calling social services, Giordano's oncologist took the children home until a family friend could be contacted.

Helen Brantley, PhD, a psychologist in Chapel Hill, N.C., who evaluated the couple as part of the custody proceedings, sided with Snyder. But she said she had reservations about the decision because "she did not know for sure whether it would be better for the children to be with [Giordano] in the last year or years of her sickness."

A judge ruled that the children should live with their father in Chicago, with regular visits by their mother. Giordano appealed the custody decision to an appeals court, later seeking intervention by the state Supreme Court. In August, the high court declined to block the custody order.

An attorney for Snyder declined to comment. At this article's deadline, attorneys for Giordano had not returned messages seeking comment.

Custody and divorce issues
Medical conditions and their potential consequences on parents often are factors in custody and divorce proceedings, said Randy Kessler, attorney and chair of the Family Law Section for the American Bar Assn. Weighing the possibility of a parent's deteriorating condition or premature death might sound terrible to parents, but they are valid questions the court must consider, he added.

"The real question the judge has to answer is: What's the most suitable life for the children? If it involves children having to see their mother suffer morning, noon and night, maybe that's relevant" to the judge, he said. "A judge has to look at two snapshots: what the child's life will be like with one parent, and what the child's life will be like with the other parent."

But removing children from parents during a serious illness could have lasting negative effects, said Arthur Derse, MD, director of medical and legal affairs at the Center for the Study of Bioethics and a professor of bioethics and emergency medicine at the Medical College of Wisconsin.

"It's tragic if a serious illness stands as a barrier between parents and children," he said. "There's a value in children understanding an illness, especially if it's life-threatening. ... Kids need to understand that people have illnesses and that people die."

Until a parent is unable to care for himself or herself, or a child is in obvious danger, Derse questions whether children should be separated from their parents. He notes that patients who have physical ailments, such as seizure disorders or certain neurological problems, are still able to adequately parent in many cases.

Doctors should be careful not to be overly aggressive in looking for medical conditions that might make parents unfit, he said. They should alert authorities only if absolutely necessary, he added.

Physicians are required by law to report any instances of suspected abuse or neglect of children. States also require doctors to alert authorities if they have knowledge of environmental conditions that could lead to children being harmed.

"If a person presents to an emergency room, and it's obvious they can't take care of their children, it might be appropriate to report them to child protective services," Derse said. "Not because it's [intentional] neglect, but because their disease is interfering with the ability" to care for their children.

American Medical Association policy says all doctors have a legal responsibility to protect children when they suspect abuse. AMA policy encourages physicians caring for the elderly to be more proactive in recognizing and treating vulnerable elders who may be victims of mistreatment.

Caring for caregivers
More elderly patients are caring for grandchildren or are the sole providers for dependant adult children. Doctors also see adult children with medical needs who are caring for elderly parents.

"There are many persons out there who are the primary caregiver of services who should not be giving out those services, but there's no one else to do it," said internist June M. McKoy, MD, director of geriatric oncology at the Robert H. Lurie Comprehensive Cancer Center. She also practices geriatric medicine at Northwestern Memorial Hospital in Chicago.

"[Adult] children might be sick, children might be incarcerated, or the children might be hardworking but can't afford day care. Suddenly, the child is stuck with an aging parent who might have a cognitive impairment."

It's important for physicians to watch for signs of potential neglect by caregivers. For geriatric patients, these signs could include dirty clothing, extreme body odor or being dressed inappropriately for the weather.

Asking patients and family members questions about their home life is essential, especially in instances where patients are becoming more ill, Dr. Hauser said.

"It's important for doctors to think about these things," he said. His practice asks, "What is happening with your children, and who is helping care for them as you become sicker? What are the ways we can help?' "

Dr. McKoy recently saw a geriatric patient whose caregiver seemed withdrawn. When Dr. McKoy pressed her on how she was doing, the woman started to cry. The caregiver was overwhelmed with providing for her mother and worried about her financial situation. Dr. McKoy encouraged her to seek help from a support group.

"She was not my patient, but many times we are forced to take care of the caregivers because they have nowhere else to turn," she said. "I will say [to them], 'We are not trying to get into your personal life, but to take care of your mom and dad, you have to be doing well yourself.' "

Once doctors know about a problematic home situation, they can help with solutions such as home aids, setting up hospice care or working with other family members to create a stronger support system, Dr. Hauser said. In some cases, state authorities may need to be called to remove dependants from a home or appoint legal guardians.

Taking time to develop a rapport with patients is important, Dr. McKoy said.

Patients "will be more apt to tell you things that are going on in their personal life if you develop that rapport with them and they know if they tell you something, you will respond," she said. "Stop writing a prescription, stop playing with a computer. Turn to your patient, look at them and say, 'I want to hear what you have to say.' Ask if there's something else going on, how's the family doing. You'd be surprised how much you find about patients by asking them."

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