Stories of progress, inspiration, and information in overcoming osteosarcoma.

Navigating End-of-Life Conversations

Pediatric palliative care expert Abby R. Rosenberg, MD, shares her experiences and advice for families contemplating a child’s possible death.

A teenage osteosarcoma patient had a clear vision of her end-of-life plan. She wanted to be at home, in her own bed, listening to Taylor Swift, with family and friends around her reading her favorite church hymn.

And then one day, she fell in the shower and became unconscious. She was rushed to the hospital, where she had a breathing tube inserted. This was so far from what she had wanted for her final hours, and her family did everything they could to honor her wishes anyway. They decorated her hospital room so it looked more like home. They invited her pastor, friends, and family to surround her hospital bed and read her favorite hymn. They put Taylor Swift on in the background. After the nurses removed her breathing tube, she opened her eyes and whispered, “Thank you.” Then she took her last breath.

Abby R. Rosenberg, MD “While it was not exactly what she had planned, she died peacefully with the people she loved around her,” says Abby R. Rosenberg, MD, Chief of Pediatric Palliative Care at Dana-Farber Cancer Institute and the Director of Palliative Care at Boston Children’s Hospital.

In her work as a palliative care specialist, Dr. Rosenberg provides many forms of support to families facing a child’s serious illness.

The Frontline spoke with Dr. Rosenberg about one of the hardest dimensions of her work: preparing families for end-of-life conversations.

Honoring your child’s wishes takes courage.

For a family facing a terminal illness, it can be tempting to postpone end-of-life discussions until the very last moment. Just thinking about having that discussion may feel insurmountably difficult. Dr. Rosenberg stresses that it is best to talk honestly and openly with your child about what’s coming so that they can ask their questions, share their worries, and express their wishes. None of that information will ever make you feel “ready,” but it will help you to plan.

“I don't think there is such a thing as a ‘good death’ in pediatric cancer. Rather than asking, ‘How can we help your child have a good death?’ we ask, ‘How can we try to make this a little less painful than it otherwise would be?’” — Abby R. Rosenberg, MD

“I don’t think there is such a thing as a ‘good death’ in a pediatric cancer context,” Dr. Rosenberg says. In those impossible moments, having the experience of a palliative care clinician can help.

Rather than asking, “How can we help your child have a good death?”, Dr. Rosenberg asks, “How can we try to make this a little less painful than it otherwise would be?”

You can’t always follow the plan.

A family can create a beautiful and honorable end-of-life plan to prepare for their child’s death, but things do not always go as expected. For one father, saying goodbye to his daughter was particularly traumatic.

Dr. Rosenberg recalls the phone call with him vividly. “I knew there was nothing else he could do,” she remembers. “He remarked how tired she looked, and that’s when I told him, ‘Maybe she needs your permission to rest.’”

A few moments after saying goodbye to his daughter, she took her last breath. To this day, the father thinks he could have done more.

Be open to accepting support.

There is immense value in having palliative care clinicians on your child’s healthcare team. They specialize in this area of expertise and can help provide emotional and spiritual support through the entirety of a child’s serious illness.

“Everybody who is involved in taking care of you and your child cares deeply about what matters to you,” says Dr. Rosenberg. “Palliative care clinicians bring additional years of training and expertise in this space.”

That training includes preparation to help families make end-of-life decisions. Including palliative care clinicians in your care can mean that you can have a little more peace when it comes time to say goodbye.

Families should not have to have these impossible conversations.

Palliative care is an extra layer of support for patients and families, and the bottom line is that better cancer treatments are needed. The Osteosarcoma Institute is committed to finding a cure for osteosarcoma so that more patients will survive.