STATES TAILORING HOSPICE CARE TO CHILDREN

Volume 27, Issue 478 October 30, 2006

Matthew Gever

In an effort to better serve terminally ill children, a growing number of states are relaxing their Medicaid hospice rules.

The latest to do so is California, which in September enacted a law (AB 1745) that will test a new pediatric palliative care benefit in Medi-Cal, the state’s Medicaid program. In a break from the past, the law enables individuals under 21 years of age to qualify for Medicaid hospice care regardless of how long they may have to live. Young beneficiaries also will be allowed to receive curative, as well as palliative, care.

Currently, 43 states and the District of Columbia provide the “optional” benefit of hospice services. Under federal rules, qualifying individuals must have a terminal illness, which generally means the patient has six months or less to live. Beneficiaries also must agree to forego curative treatment and accept only palliative care, which focuses on pain control and symptom management.

These two requirements are especially problematic when it comes to children, experts say. Forcing parents to decide whether to keep fighting for their child, or to accept the inevitable allow their child to die “was not humane,” said Assemblywoman Wilma Chan, who introduced AB 1745. “For a parent to make that choice is just heartrending.”

In addition, it’s generally more difficult to estimate how long a child with a life-threatening disease has to live than it is to make the same prediction for adults. “Disease in general expresses differently in children,” said Ann Armstrong-Dailey, founding director and CEO of Children’s Hospice International (CHI). “Physicians are getting better at treating many of these children and prolonging their lives, yet they live with the possibility of a recurrence hanging over their heads. With cancer, for example, children are in and out of remission multiple times over the course of several, often many years.”

Thus, California (and other states) are allowing individuals under 21 years of age to qualify for Medicaid hospice benefits if they have a condition that may result in death, regardless of the estimated length of their remaining period of life. Beneficiaries also may receive curative as well as palliative care.

Approximately 10,000 California children have a terminal illness and are in a publicly funded health-care program. The law states that the pilot may be implemented only to the extent that federal financial participation is available, and California must submit a waiver for the benefits to the Centers for Medicare & Medicaid Services (CMS).

Extending Help to Children

Children are often overlooked when it comes to hospice care. CHI estimates that less than 1 percent of U.S. children who could benefit from hospice care receive it. “For a number of reasons, the adult hospice model does not translate for children,” said Armstrong-Dailey.

The state Department of Health expects to submit its waiver application to CMS within the next 12 months. The project will start in Alameda County in the northern part of the state, which includes the city of Oakland. Alameda County is home to the George Mark Children’s House, which was the first children’s end-of-life care facility in the nation.

California is basing its waiver application on CHI’s Program for All-Inclusive Care for Children and their Families (CHI PACC). Under this model, states apply for a waiver from CMS to implement the program—allowing children who are receiving palliative care to also pursue curative treatments. CHI PACC offers a continuum of care for children with life-threatening conditions and their families from the time of diagnosis, with hope for cure, through bereavement.

Currently, Florida is the only state with a waiver in place, according to Armstrong-Dailey. In July 2005, the state began the Partners in Care—Together for Kids program. There are currently 158 children enrolled in this program, with an average age of just under 10 years. The most common illnesses for these children are leukemia, muscular dystrophy, cerebral palsy and cystic fibrosis.

Colorado is the only other state to have applied for a waiver and is expecting approval soon, according to Armstrong-Dailey. Eight other states either have demonstration projects or are considering a waiver as well. The Department of Defense as well as several foreign countries have also expressed interest in the CHI PACC model, according to Armstrong-Dailey.

“The bottom line is the quality of care for children with life-threatening conditions and their families, based on the needs of the children and their families,” she said.