A woman considers aborting her pregnancy after prenatal testing reveals her child will be born with Down syndrome. After years of battling cancer, a teenager decides she would rather not take a risky yet potentially lifesaving drug. Parents contemplate having a second child in hopes that the new baby might donate bone marrow to their first child.
These tough situations, where medicine meets morals, exemplify the field of bioethics. Since such dilemmas largely arise in hospital settings, physician ethicists have traditionally dominated the field. But more psychologists now entering the field to provide multidisciplinary care are finding that hospitals increasingly value their skills in empathy and effective communication, to name a few, several psychologists say.
Not only are psychologists working on decision-making teams with ethicists and physicians, they are informing those decisions through psychological research. Many of them specialize, for example, in working with seniors grappling with end-of-life issues (see pages 53-54, "Psychology at the end of life"); others focus on the other end of the spectrum: children. Meet three who illustrate just some of psychologists' work in the latter area.
Spelling out all sides
As the director of the office of ethics at Children's Hospitals and Clinics of Minneapolis and St. Paul, psychologist Don Brunnquell, PhD, describes himself as a "first responder" for the ethics committee who helps families and the medical staff explore the information and ethical issues surrounding a difficult, often life-threatening medical decision.
For example, Brunnquell helps parents understand both the possible benefits of a high-risk cardiac surgery for a child with a congenital heart condition and the potential harm to the child's quality of life that the surgery, even if successful, might pose.
However, he's quick to note that his job doesn't include making ethical decisions.
"Many families are facing these issues for the first time," he says. "So my role is to assist families in gathering all the relevant information for their decision, to advocate for parents as decision-makers for their child and to help families and staff members understand the information in the same way."
To do that, Brunnquell sometimes must facilitate communication between families and dozens of medical staff. While the medical providers welcome his input, he is clear with both parties that he does not offer medical opinions. Brunnquell ensures adequate coordination with mental health providers to help the patient through medical treatment, avoiding harm while providing benefit. Doing so is an ethical mandate, he notes.
Some of Brunnquell's challenging dilemmas concern children with cognitive disabilities. The overwhelming medical concerns about a child's upcoming surgery often mean that medical providers forget to ask questions about how the surgery could impact a child's well-being, so Brunnquell works to make the issue front-and-center in the bioethical consultation.
To illustrate, he offers a hypothetical: An 8-year-old diagnosed with autism happens to need complex abdominal surgery to reimplant a ureter, a duct that connects the kidney and bladder. What unique preparation, supervision and follow-up does the child require due to her autism? For example, many children with autism struggle with social anxiety, and patients often meet dozens of medical staff members prior to surgery. Yet involving the child through discussion and preparation is essential, and taking their views into account to the extent of their capacity is ethically appropriate and helpful in hospitalization, Brunnquell says. Given this, he would advise staff to limit new interactions with this particular patient before the operation to those meetings that are only absolutely necessary, yet still encourage real dialogue with the patient.
"By doing that, we learn what their concerns are and how to alleviate them," Brunnquell says.
Helping people hear each other
Though not a bioethicist by title, Andrea Farkas Patenaude, PhD, director of psycho-oncology research in the division of pediatric oncology at the Dana Farber Cancer Institute, has dealt with such ethical decisions as determining a child's mental capacity to understand informed consent to be a bone marrow donor.
Patenaude has provided psychological treatment to patients undergoing genetic cancer testing or bone marrow transplants; sometimes these patients are children with disabilities, a population she has worked with for many years. She has consulted with other psychologists and a bioethicist on ethically questionable cases, such as how the staff should treat a teenager who decides to cease treatment following a relapse, knowing this decision will result in his death in a few months. In such cases, Patenaude tries to understand both sides of the arguments, but concentrates especially on what is in the best interests of the child. This means talking to the patient about his reasons for declining treatment.
In one bioethical instance, Patenaude worked with a younger child who developed cognitive problems and an altered appearance as a result of her leukemia, which upset her parents so much that, when the child relapsed, the parents refused to try new chemotherapy to prolong the child's life.
"It was a difficult dilemma for the medical staff because they wanted to offer treatment and couldn't get the parents to agree to it," Patenaude says. "Our role as psychologists was in trying to mediate with the parents and talk to the hospital staff about the limits to what the staff really had control over."
The psychologist can help explain everyone's points of view to each other in situations like this and help make sense of the family's decision, even if it isn't what the hospital staff hoped. Indeed, she says, psychologists often hold a unique vantage point in tough situations, such as when parents can't talk to their child about the child's possible death and the staff isn't sure how to intervene.
"Children seem to understand that inability in their parents and often talk to the psychologist about it," she says. "In those circumstances, psychologists can be an advocate for the children," and ensure communication between the child and parents doesn't break down, Patenaude says.
Bringing psychological research to bioethics
Beyond assisting patients at their bedsides, psychologists can also contribute to the field by providing research that informs bioethicists about cognitive disabilities, says Debjani Mukherjee, PhD, a clinical educator at the Center for the Study of Disability Ethics, part of the Rehabilitation Institute of Chicago.
"People working in bioethics have a need for good data about the long-term functionality of people and their quality of life," she says. "We need to ensure that when people consider quality of life, they have as much balanced and accurate information as possible."
By informing bioethicists on research findings about how different people perceive their own and others' quality of life, especially over time, she explains, psychologists can help bioethicists better understand the desires of patients and avoid the common assumptions people often make about those with disabilities--namely, that their quality of life is poor, that they do not enjoy life or that their life is not as valuable as that of someone without a disability.
For example, consider the 1997 case study of parents who withdrew the life support of their 17-year-old daughter who had been injured in a car accident--the subject of Mukherjee's doctoral dissertation, which she wrote at the University of Illinois at Urbana-Champaign in 2000. The staff on the case struggled to understand the family's decision because the medical team's goals were to save the girl and not focus on the long-term quality of her life, which prognoses indicated would be poor.
To help fill such gaps in understanding between medical staff and families in her own work, Mukherjee facilitates educational seminars as part of a multidisciplinary ethics team that works with staff to identify and address ethical issues. She is interested in how people process emotionally laden information and how biases of both families and medical staff may affect decision-making.
Mukherjee says staff can use such understanding to better understand and respect the family's role in a bioethical dilemma, thereby ensuring decisions produce less conflict. "Getting that research out there is critical," she notes.