Berkshire Eagle - A shoulder to rely upon hope with hospice

A shoulder to rely upon hope with hospice

By Jack Dew
Berkshire Eagle

July 15, 2007...At 1 year old, Nicholas Adams can't quite keep up with his two older sisters, Felicity, 4, and Chloe, 2, but he finds ways to borrow some of their energy. While they jump on a small, triangular trampoline in their Pittsfield backyard, he leans on the edge, almost cackling with joy as their bounces carry him up and down.

It's been a tough day for Nicholas. He went to the doctor — another in a seemingly endless string of visits — because his lips have been turning blue. Now, his play time is briefly interrupted when two members of HospiceCare in the Berkshires arrive to meet him.

But the women are here to play, not treat him, and Nicholas soon becomes absorbed in a turtle-shaped sandbox ,where he clumsily scoops sand into a bucket and onto his feet.

As an infant hospice patient, Nicholas is part of a growing movement in Massachusetts to bring the services once reserved for dying adults to children who suffer a life-altering illness.

Nicholas was born with jaundice. When that cleared, he started having coughing fits. The doctors diagnosed asthma, but the medications they prescribed didn't help, and soon he was showing other symptoms.

"I just knew something had to bind it all together, the jaundice, the coughing," said his mother, Ashley Sykes.

After trips to specialists, he was diagnosed with a rare genetic disorder — alpha1-antitrypsin deficiency — a condition that can affect both the lungs and the liver, potentially causing emphysema as the lungs grow rigid from the lack of a particular protein.

Constant care

Nicholas' small body has already undergone more medical procedures than many adults. So many, in fact, that his mother made a brochure detailing his journey — the trip to Massachusetts General Hospital at 8 1/2 months, where he had a lung biopsy, an emergency brachoscopy and an endoscopy. An echocardiogram in May. In June, a long probe was inserted through his nose, down his throat and into his stomach. He was supposed to wear the tube for 24 hours while it measured the pH level of his stomach, but he pulled it out in his sleep after 12 hours.

Sykes is 23, and Nicholas is her third child. His condition means constant trips to doctors' offices, to Baystate Medical Center in Springfield, to Boston for special treatment. His symptoms can flare into a crisis without warning, and Sykes has had to leave her job as an accountant to care for him.

At times, Sykes admits, she feels overwhelmed. The marathon trips to Baystate, the late-night visits to the emergency room and the hours spent nursing Nicholas through coughing fits can be exhausting. And underneath the fatigue runs a stream of anxiety about his well-being.

"Certain things that might seem small to other people, they really feel big to me," she said. "After the fact, when you can calm down, you can look and see that it wasn't that big a deal. But at the time, it feels huge."

HospiceCare in the Berkshires has stepped in to help, providing a therapist, a shoulder to cry on, access to more services and a place where Sykes can always turn for help. Nicholas is one of four young patients HospiceCare has been helping since the debut of the pediatric program in January.

"You need to think of this program as a safety net," said Claire Pace, executive director of HospiceCare. "It doesn't address just one dimension of care, but all dimensions, and it is a safety net for the whole family. We are alongside this family as they weather the ups and downs of a serious illness, keeping in mind that it is not just the child that needs help, but the whole family."

Helping children

Hospice has traditionally been bound by its mission to help dying patients. Its clients must be nearing the end of their life and must have stopped curative treatments. That definition leaves children on the outside, Pace said, because few families are willing to forgo any treatment, no matter how experimental or how long the odds of success.

A movement has sprouted to change that conventional definition and bring the talents of hospice to the problem of seriously ill children. In January, 10 agencies in Massachusetts — including HospiceCare in Pittsfield and Northern Berkshire VNA & Hospice in North Adams — were awarded $55,000 each to run a pediatric program for six months. That funding has now been continued for another year.

To qualify, children are referred by their pediatrician. They must be suffering a life-altering and potentially fatal illness — such as cancer, cystic fibrosis, HIV/AIDS or organ failure.

The Hospice and Palliative Care Federation of Massachusetts led the drive for state funding. Its executive director, D. Rigney Cunningham, said that about 260 children in Massachusetts die each year of diseases that would have been appropriate for hospice care, but the services were not reaching the children.

"We tried to design a program that would remove the barriers," Cunningham said. "We went straight to the Legislature instead of MassHealth or Medicare because we thought it would be shorter."

State Sen. Richard T. Moore, D-Uxbridge, sought the hospice money as part of the sweeping health care reform passed last year. Now he is hoping the program will expand to more hospice and visiting nurse associations.

"If we are trying to get universal coverage for health care, we wanted to make sure that this kind of care was available to children as well as to adults," Moore said in a telephone interview.

The Legislature has already extended funding for the program. In North Adams, the VNA & Hospice will receive $110,000 over two years to continue its program. Executive Director Wendy Dubis said the agency is in the process of adding more services to its pediatric program, including alternative therapy options.