Fear, exclusion mark most parents’ experience
Physicians and nurses who work with sick children know that, in many ways, they are caring for entire families instead of just a single patient.
Parents must make the major decisions about their child’s treatment, but often they are distraught and overwhelmed by the situation, and intimidated by the health care system.
But many parents of critically ill and dying children still feel they must struggle to get coherent information about their child’s condition and to interpret that information in order to make the best care decisions, says Deborah Dokken,MPA, an advocate for improved pediatric end-of-life care with the Initiative for Pediatric Palliative Care (IPPC) in Newton, MA, and a parent who has lost two children in infancy.
Parents want to be involved
Dokken’s first child, Abigail, was born prematurely at 25 weeks’ gestation and spent six months in neonatal intensive care but died without ever being discharged from the hospital. Her second, Jonathan, also was born prematurely and lived only a few hours after his birth.
Trying to fulfill their role as parents, when their children were sick and fragile and under the constant care of medical professionals, was a painful and difficult task, Dokken says.
"We struggled with how to learn the system of the hospital," she explains. "When could you visit? When were you expected to leave? To whom could you direct questions? I actually remember practicing the pronunciation of complicated medical terms in front of the bathroom mirror at our home so that I could fit in a little more."
Although Abigail was very fragile and sick, Dokken and her husband wanted to do loving things such as sing lullabies, hold and comfort her, give baths, and change diapers.
"But some things were not possible, some were not allowed, and some were just uncomfortable," she recalls. "After all, who wants to sing lullabies in an open room with an audience."
They struggled with changes in the providers who cared for their daughter — residents and fellows changed rotations, nurses changed shifts; even the head of the unit changed each month over the course of her six-month hospital stay. "Just as we felt secure with someone, that they knew Abby and knew us, then they would leave and we’d have to start all over again with someone new."
They were overwhelmed with conflicting information about Abigail’s condition. The head of the unit would be very positive about her potential outcome, but another physician would offer little hope. Lacking a medical background, she and her husband found even daily updates about her care were mostly confusing.
"When we were told decisions of ours required review by an ethics committee, we felt frightened, angry, and very alone," she remembers.
The hardest part was struggling to go on living after Abigail had died, she says. "I still remember coming home the day of her death, with a plastic hospital bag filled with her belongings — clothes, toys, lullaby tape. We entered our house and simply didn’t know what to do with our new status."
Several of Abigail’s caregivers attended her memorial service, but there was no way for the Dokkens to maintain further contact with them.
"They had been like family during the six months of her life," she notes.
Care for grieving parents
Health care institutions, including dedicated hospice programs, are often unprepared to deal with parents who are grieving over very young children who are critically ill, adds Lizabeth H. Sumner, RN, BSN, director of the children’s program at San Diego Hospice.
"We have a program [for children] as a direct result of identified needs of parents," she explains. "We had parents who literally walked into our front door at the hospice campus who were pregnant. They had named their babies, they knew what their diagnosis was, they were aware of the risks and the potential for the baby to die at or soon after birth. We weren’t quite sure what to do with them at first."
It’s important for palliative care providers to understand the special needs of these families, she says. Palliative care and good end-of-life care often need to emerge at the beginning of life and throughout the trajectory of childhood illnesses. "End-of-life care is not just about seniors dying in nursing homes after a lengthy illness."
Make the last moments count
San Diego Hospice has had to take the best principles of palliative care — the prevention and relief of suffering — and take them into the uncharted territory of pregnancy, Sumner says.
"Parents aren’t even asking that everything in the world be done to save their baby’s life," she explains. "But they are asking for the full measure of dignity and respect and the prevention of pain and suffering. That suffering can be physical, emotional, and spiritual as well."
Parents frequently tell her that they want to be able to be a parent to their child, even if it is only for a few moments, she relates. They want to do the things like sing, hold, comfort, and make educated decisions about what care to provide and what measures are unnecessary.
"We can often think about ways in which to make this happen," says Sumner. "We can craft a birthing plan, which is, in a sense, a care plan for the family. Not just, Do I want my baby resuscitated or not?’ But the very subtle, incremental, and emotional decisions that families must make to find meaning and purpose and intimacy in that experience."
Lifetimes are really all the same; they all have a beginning, middle, and an end, whether they last years or minutes, Sumner says.
"It is about living in between, regardless of how long the life, how long the illness," she says. "There needs to be emphasis on the quality of that life and the integrity of that experience."
Sources
- Deborah Dokken, MPA, The Initiative for Pediatric Palliative Care, Center for Applied Ethics and Professional Practice, Education Development Center Inc., 55 Chapel St., Newton, MA 02458-1060.
- Lizabeth Sumner, San Diego Hospice, 4311 Third Ave., San Diego, CA 92103.