There are times when, no matter how skillfully the medical team communicates, they stand at an impasse with the family.
“This is emotional torture for us,” Dr. Gundersen said. “It’s moral distress. We kind of dread these situations. In these cases, trying to support yourself and your team emotionally is the most important thing.”
Ami Doshi, MD, director of palliative care inpatient services at Rady Children’s Hospital in San Diego, described the case of a baby girl that touched on the especially painful issues that can arise in pediatric cases. The 2-month-old girl had been born after a pregnancy affected by polyhydramnios and had an abnormal neurological exam and brain MRI, as well as congenital abnormalities. She’d been intubated for respiratory failure and was now on high-flow nasal cannula therapy. The girl was intolerant to feeding and was put on a nasojejunal feeding tube and then a gastrostomy-jejunostomy tube.
But the baby’s vomiting continued, and she had bradycardia and hypoxia so severe she needed bag mask ventilation to recover. The mother started to feel like she was “torturing” the baby.
The family decided to stop respiratory support but to continue artificial nutrition and hydration, which Dr. Doshi said, has an elevated status in the human psyche. Mentioning discontinuing feeding is fraught with complexity, she said.
“The notion of feeding is such a basic instinct, especially with a baby, that tackling the notion of discontinuing any sort of feeds, orally or tube feeds, is fraught with emotion and angst at times,” Dr. Doshi said.
The girl had respiratory events but recovered from them on her own, but the vomiting and retching continued. Eventually the artificial nutrition and hydration was stopped. But after 5 days, the medical staff began feeling uncomfortable, Dr. Doshi said. “We’re starting to hear from nurses, doctors, other people, that something just doesn’t feel right about what’s happening: ‘She seems okay,’ and, ‘Is it really okay for us to be doing this?’ and ‘Gosh, this is taking a long time.’ ”
The medical staff had, in a sense, joined the family on the emotional roller coaster.
Dr. Doshi said it’s important to remember that there is no ethical or moral distinction between withdrawing a medical intervention and withholding one.
“Stopping an intervention once it has started is no different ethically or legally than not starting it in the first place,” she said.
According to Dr. Doshi, there is a general consensus among medical societies that artificial nutrition and hydration is a medical intervention just like any other and that it should be evaluated within the same framework: Is it overly burdensome? Are we doing harm? Is it consistent with the goal of care? In so doing, be sure to respect patient autonomy and obtain informed consent.
As with so much in medicine, careful communication is a must.
“Paint a picture of what the patient’s trajectory is going to look like with and without artificial nutrition and hydration. At the end of the day, having done all of that, we’re going to ultimately respect what the patient or the surrogate decision maker decides,” Dr. Doshi said.
After assessment the data and the chances of success, and still without clarity about how to proceed, a good option might be considering a “time-limited trial” in which the medical team sits with the family and agrees on a time frame for an intervention and chooses predetermined endpoints for assessing success or failure.
“This can be very powerful to help us understand whether it is beneficial, but also – from the family’s perspective – to know everything was tried,” Dr. Doshi said.
Hospitalists should emphasize what is being added to treatment so that families don’t think only of what is being taken away, she said.
“Usually we are adding a lot – symptom management, a lot of psychosocial support. So what are all the other ways that we’re going to continue to care for the patient, even when we are withdrawing or withholding a specific intervention?” Dr. Doshi noted.
Sometimes, the best healer of distress in the midst of end of life decision making is time itself, Dr. Gundersen said.
In a condolence call, she once spoke with a family member involved in an agonizing case in which the medical team and family were at odds. Yet the man told her: “I know that you all were telling us the entire time that this was going to happen, but I guess we just had to go through our own process.”