How a bereaved mother helps researchers improve palliative care

Jamila Hassan’s son Omar was two years old when he was diagnosed with acute lymphoblastic leukemia. He went through chemotherapy, remission, relapse, more chemo and a bone marrow transplant before he died shortly before his 10th birthday in 2012.

Hassan drew on the support of parents she met at the Bass Center for Childhood Cancer and Blood Disorders at Stanford Medicine Children’s Health, people who knew firsthand how to care for — and lose — a child with cancer. Their insights have motivated her to pay back families in similar situations: She recently joined a team of scientists preparing a paper on the ethical conduct of bereavement research to share what she’s learned from Omar’s long journey. as a childhood cancer patient.

Hassan’s contribution to the article includes comments on the value of families’ advanced knowledge of terminal illness management. In part, she says, “I think research like this will improve the little things that parents remember about those important discussions or stressful moments, like how the doctor or nurse talks to you slowly and calmly or helps you feel supported.”

Including families

Hassan’s work with a panel of experts from across the country, which began at the invitation of Stanford University nurse practitioner Kimberly Pike-Grimm, Ph.D., is an example of the unusual new directions experts are taking to engage families of victims in research on end-of-life medical decisions. lives of their children.

Hassan’s paper; Pike-Grimm, Clinical Associate Professor of Pediatrics; and their staff, which was recently published in Pediatrics, looks at how best to study end-of-life decisions. To their knowledge, they were among the first to add a parent who had lost a child to cancer to their team of scientists and bioethicists.

“I think there is always room for improvement in our process palliative careincluding end-of-life care,” said Pike-Grimm, who studies treatment decision-making at Stanford Medicine Children’s Health.

For example, families might appreciate the early integration of a palliative care provider into their child’s team, specific social support or another way to share difficult medical news, she said. Research on families’ views on terminal illness treatment has been rare, partly as a result of researchers’ concerns about whether such studies place too much burden on people who are stressed or grieving. But the desire to learn from families’ experiences means the work is gaining momentum.

According to Pike-Grimm, bereaved parents understand end-of-life decisions that cannot be replicated by academic expertise, making them invaluable not only as research participants but also as full-fledged researchers.

“Personally, let them guide us, use their wisdom and experience,” she said.

Benefit from knowledge

The new paper proposes a study design in which researchers interview families about their experiences with end-of-life decision-making. These families were asked about their perceptions of talking to caregivers about the end of life, including what caregivers said or did that helped the family make difficult decisions about their child’s care.

The interview can focus on any end-of-life decision. Families can be involved in decisions such as when to stop chemotherapy for a child whose cancer is not responding to treatment, when and how to start palliative care, how to approach pain management at the end of life, or how health care can support the patient’s desired goals achieve in the rest of his life.

The paper includes an expert analysis of the ethical strengths and weaknesses of such research.

During the seven years Omar was in and out of the hospital, the Hassan family of San Jose, California, formed a strong bond with Omar’s caregivers.

“I had the most amazing team to work with, amazing doctors and nurses. They did everything they could to save him,” Jamila Hassan said. The team also did their best to make the hospital more welcoming, following Omar’s suggestions, such as serving fun food (Oreos and pizza) and supporting his efforts with his mom to start Omar’s Dream Foundation, a charity that provides iPads to help children participate in school while they are in the hospital.

When Omar was very ill, Hassan was grateful for the time she got emotional support from educators from the team who knew her well. She especially appreciated the effort Omar’s caregivers made to connect her with another mom who had lost a child to cancer, someone who could listen to her with knowledge and compassion.

Despite all the love and support from Omar’s team, there were times when Hassan wondered if her family’s caregivers really understood what it was like to have a terminally ill child.

“They say things like, ‘You’re going to be fine,’ and when you hear that as a parent, you think, ‘This person is saying that because it’s her job, but she hasn’t been through it herself.’ Hassan said.

Flexibility helps

In the article, Hassan described how researchers can adapt research to address the needs of families. Instead of sticking to hard deadlines for when families can join a study, for example, Hassan advocates flexibility, suggesting that researchers should be attentive to the combination of stressors that families with dying children face.

“Parents may be worried about work, finances or other children or just having a rough day,” she wrote. “Also, they may not be eating or sleeping well (child or parent) or not wanting to leave their child. An individual approach will be important.”

Building on existing relationships between the child’s caregivers and families would also be helpful, Hassan said, noting that as a parent she would be more likely to participate in a study if she learned about it from her son’s doctor rather than from a scientist who she had have never met. She also suggested that parents who had already participated in the study could refer new participants.

Pike-Grimm hopes that guidelines like Hassan’s will strengthen the research field and ultimately help all caregivers approach end of life care as sensitively as possible.

“Sometimes it’s the simplest things that make the biggest difference,” Pike-Grimm said, adding that end-of-life caregivers often need to shift from giving orders to just being present and listening: “It’s about taking the time to figure out what to do with the patient and family do you want What is important to them at this stage?” and doing everything we can to get them there.”