The palliative care team organized a care conference attended by Amy’s primary care physician, palliative care team members, and other specialists. Although the care conference resulted in small adjustments to her care plan—a change in medication and the addition of one diagnostic test—the true change came when Amy’s mother turned to Dr. Hood and said, “You know, I thought you’d given up on us.”
That’s when it occurred to Dr. Hood that families like these, visiting specialist after specialist for their child’s complex medical conditions, are “on ‘a ship without a captain.’ Whether or not their children have life-limiting illnesses, they need a captain of the ship to help them navigate their journey,” she says.
Amy’s mother had been under the impression that the physicians were telling her there was nothing else to hope for. “You don’t give up hope,” asserts Dr. Hood. “You just change what you’re hoping for.”
Amy died three months after the palliative care conference, but took a Make-A-Wish Foundation trip to Disneyland and celebrated Christmas at home with her family. Her last wish, after Christmas, was to avoid re-entering the hospital, and this was honored as well.
There May Be More Time to Live
Attention to nuances embedded in patients’ stated wishes can sometimes result in a reversal of expectations about end of life. Stephanie Grossman, MD, assistant professor of medicine and co-director of the Palliative Care Program for Emory University Hospital and Emory Crawford Long Hospital in Atlanta, was called by the hospitalist service last year to help facilitate transfer of a patient to hospice care.
In her 70s, the active woman had come to the hospital because a tumor mass was eroding through her breast tissue. The woman was avoiding treatment, including a biopsy, and appeared to be resolved to her fate. Based on her conversation with the emergency department (ED) attending, hospice was discussed and recommended; the patient was admitted primarily for IV antibiotics and care of her wound. In discussing goals of care with the patient, however, Dr. Grossman was able to elicit her reasons for refusing treatment. Ten years earlier, the patient had watched her daughter suffer with aggressive chemotherapy and radiation for her breast cancer. She told Dr. Grossman, “I’ve lived my life; I don’t want to go through all that.”
Knowing that breast cancer treatments have evolved in the past decade, Dr. Grossman asked the woman whether she would agree to a consultation with an oncologist to find out about less toxic treatment, including hormonal therapy. Subsequently, the patient decided to undergo a lumpectomy to increase her options. Dr. Grossman also prescribed a mild pain reliever for the woman, who had expressed fears about becoming addicted to pain medication (a common misperception in elderly patients). Upon discharge, the patient was feeling better physically, and she was optimistic about her future.
Despite the perceptions of the ED staff, the patient had not been hospice-appropriate. “No one had ever offered her the alternatives. In her mind, she saw chemotherapy as this terrible thing, and she just didn’t want to have that,” says Dr. Grossman. “So by listening to her we found out why she didn’t want chemotherapy, and we were able to encourage her to talk with the oncologist and the surgeon.”
I’m Afraid of What Comes after This Life
“Sometimes you find that patients and families are making decisions purely in a spiritual context,” notes Dr. Mahoney. “Until you know that, you can deliver clear and concise medical information and opinions and they won’t hear it. They may respect your opinion, but they will not take that into consideration when they’re making the decisions about themselves or a loved one because their spiritual belief system supersedes that factual information.”