Page 14 - Focus March 2018

Hospice and Palliative Medicine | Choosing to remember
Thanks to advancements in imaging and diagnostic tools, obstetricians have become better equipped to diagnose genetic abnormalities,
birth defects and other life-limiting conditions for infants. Dealing with the trauma these conditions inflict on families, though, requires a different set of skills.
Historically, American doctors might ad- vise pregnant women in these circumstanc- es to terminate the pregnancy, said Wendy Sturtz, M.D., an attending neonatologist. But some families who choose to continue the pregnancy and allow their baby to die naturally, supported by a perinatal pallia- tive care approach, may lessen the anxiety, depression and trauma of losing an infant.
In 2009, Dr. Sturtz helped form a six-person multidisciplinary team to improve the
way Christiana Care takes care of families and infants in life-threatening situations, including extreme prematurity.
In 2012, her team started IMPACT, the Infant Maternal Pediatric Advanced Care Team, to provide consultative patient care, staff support and education. They now help to provide care for about 40 babies and their families a year, either prenatally (after a fetal diagnosis) or in the neonatal intensive care unit.
Even if their child will survive outside the womb for only minutes or hours, parents want to show affection and form loving memories with their baby.
“They know time with their baby is short,” said Dr. Sturtz, the team’s medical director. “They look for a connection to their baby, and we help them show their babies love and make memories.”
Sometimes, families want to take pictures with their baby and experience normal
“Sometimes, the best thing we can do is to bear witness to what a family is
going through.”
Wendy Sturtz, M.D.
parenting activities such as dressing and putting on diapers. Part of the team’s role is to help parents honor their child and their relationship.
How that looks in practice, including the decision on whether to continue with a pregnancy, is, of course, up to the family.
“All we do is offer a suggestion,” she said. The team explains what other families have looked back on fondly and asks if these steps feel right.
The IMPACT team members also have been educating their fellow providers about how to communicate with families in these situations.
Ideally, providers can validate and reassure parents — “It is clear how much you love her” — while acknowledging their grief.
Often, perinatal palliative care is about allowing parents to grieve without trying to find a silver lining. In some cases, they don’t have to say anything; just being present is enough.
“Sometimes, the best thing we can do is to bear witness to what a family is going through,” she said.
It can be difficult to quantify the value of their work, but the team knows they make a difference when they read the poignant thank-you letters from former patients. Mixtures of grief and gratitude, these letters are reminders that parents cherish the opportunity to have shown love to their child, even briefly.
“These families have to learn how to say hello and goodbye at the same time,” Dr. Sturtz said.
Palliative care supports patients whose lives are disrupted by cancer
A cancer patient isn’t only coping with cancer; the illness brings a host of physical, emotional and practical complications. An oncologist may prescribe chemotherapy to control a tumor; the palliative medicine team can help with everything else.
The work takes time. Kenneth Trzepkowski, M.D., medical director of the Graham Cancer Center’s Supportive and Palliative Care Team, who joined Christiana Care
in 2016 after a 32-year career as a military physician, said the team may spend 90 minutes getting to know patients and their families at an initial meeting.
Michelle Bailiff, LCSW, OSW-C, oncology social work supervisor at the Graham Cancer Center, said the 2016 expansion
of palliative care to the center allows providers to devote more time to symptom management.
“Patients who see our palliative providers are getting in front of a multidisciplinary team faster,” Bailiff said, including psychologists, dietitians and social workers. Social workers counsel patients through grief and gradual loss, medical and otherwise. Bailiff said patients often have what’s called “disenfranchised grief” — the losses that cancer inflicts but are unacknowledged by friends and family.
Patients may lose a job or see their close relationships changed.
“But the people around them are often focused on not losing their loved one, which makes it harder to see and acknowledge the pieces of the patient’s life that have already been taken,” Bailiff said. “Palliative care provides a place for that person to talk about what’s been lost along the way and how much it hurts.”
“Palliative care provides a place for that person to talk about what’s been lost along the way and how much it hurts.”
Kenneth Trzepkowski, M.D.
12 CHRISTIANA CARE HEALTH SYSTEM