Dr. Epstein participated in a particularly memorable case last fall, consulting with a patient who had metastatic renal cancer. Surgery had left him with an abdominal abscess, which surgeons were proposing to address with another procedure in order to prevent a potentially fatal infection. The palliative care team was called in to help Mr. A, who was only 50, decide on a care plan. During the care conference, says Dr. Epstein, Mr. A was alert and joking with his wife and indicated that he would rather go home with hospice care than undergo another surgery.
The team asked Mr. A about his goals. “He didn’t know how much time he had left,” recalls Dr. Epstein, “although he had a specific goal in mind: One of his four sons was getting married, and he wanted to be there for that. They were a very close-knit family.” Mr. A had been intensely engaged as a father all through his sons’ school years. They ranged in age from 19 to 30, and Mr. A was determined to remain close with them throughout his dying process.
The care team facilitated his return home with a PCA pump for pain and a link with a visiting hospice nurse and social worker. The case was followed by a reporter from the St. Paul Pioneer Press, and it was in those articles that Dr. Epstein learned more of Mr. A’s story. For instance, extended family members were pitching in to remodel the house; Mrs. A would have to sell it to cover her husband’s medical bills after he died. The engaged son later had to tell his father that his fiancée had canceled the wedding. Mr. A was able to allay his son’s guilt and fear about the canceled wedding and to be the kind of supportive father he had always been.
Because his goal of living until the wedding had changed, Mr. A was then able to focus on his other goal: having family with him as he died at home. And, indeed, Mr. A died a peaceful death a few weeks later surrounded by his whole family.
A Ship without a Captain
Pediatric hospitalists who handle palliative care recognize that, unlike adults’ end-of-life trajectories, which are usually a straight line, the trajectories of children with complex medical conditions tend to be more erratic between diagnosis and cure or death. As a result, their families spend a longer time relating to the medical system. The job of the palliative care team is to acknowledge the family’s experience and reframe that experience into a more egalitarian and satisfying one, including a comprehensive plan of care, says Margaret Hood, MD, senior pediatric hospitalist at MultiCare’s Mary Bridge Children’s Hospital in Tacoma, Wash. Thus, the interdisciplinary team at Mary Bridge meets with the family around a round table, where everyone’s input is given equal respect and weight.
Dr. Hood recalls one case that was brought to her attention by a social worker. Amy (not her real name) had been born prematurely and had endured many medical problems in her first four years. Then, at age four, she started walking and talking; by age seven, she was reading at the fifth grade level. From ages seven to 10, Amy had minor problems, but she began deteriorating at age 10, when it was found that she had mitochondrial disease. The family had taken her to many specialists without any resolution to her problem and had been charging medical treatments to their credit cards. The social worker was concerned that the family would be devastated by bankruptcy.