Enhancing pediatric hospice services
Join forces with others
It’s understandably difficult for private duty providers who have only a handful of terminally ill pediatric patients each year to earmark the necessary resources for a full-blown, formal pediatric hospice program. Those with small caseloads, however, can take a number of steps to bolster their program and increase utilization without draining operations, according to sources.
"Almost all pediatric hospice providers feel they’re failing because they have so few patients, and serving so few in the community," says Paul Thayer, MA, MDiv, director of Palliative Care at PediCare, the home health arm of Franciscan Children’s Hospital and Rehabilitation Center in Boston. However, small case volume is apparently more the norm than the exception. A recent Children’s Hospice International survey found that over 120 of the 200 respondents serve fewer than 12 patients annually.1
Low mortality rates, difficulties among families and health care professionals reconciling themselves to a child’s impending death, and some complicated benefit issues all influence end-of-life care referrals. Private duty providers obviously have no control over the number of terminally ill children in their community, but can affect other referral factors, according to Thayer.
A hospice by any other name . . .
"Hospice" is an emotionally charged word, especially for parents and others caring for terminally ill children. To ease the acceptance of end-of-life care and meet state and federal regulatory requirements, many providers use terms other than hospice to describe care.
Palliative care is commonly used, but may have little impact on the timeliness of referrals. "It increases the speed of referrals by about a week," according to Thayer.
He recommends using a name such as Sunbeams,’ that "strikes a balance between being clear about the program’s purpose, and not clubbing people on the head with death and dying."
PediCare’s brochures describe its Family Care Program as "a family-centered program for families caring for a child with a life-threatening illness while providing emotional, spiritual, and practical support to assist families with caregiving and coping."
While the choice of your program’s name may have some influence on the overall timing of referrals, other factors also come into play. "Referrals are not made in a vacuum. They’re made by a person," Thayer notes.
Interpersonal and emotional issues can block referrals as much as clinical and reimbursement challenges.
For example, hospital staff caring for a child during a long illness may become emotionally attached; feeling that they "own" the child, and having difficulty letting go even when further curative interventions will not help, he explains.
Doctors struggle with patients’ death as much as any other members of the care team, according to Kate Faulkner, MD, consultant in palliative care for PediCare. "Death is seen as a medical failure, especially in pediatrics," she notes.
You can overcome both parental and professional referral barriers, enhance your program’s community presence, and extend its service reach with several actions, sources advise.
• Give referral sources feedback.
"Acknowledge referral sources’ ownership; don’t try to get rid of it. Write narratives of team meetings and send them to physicians, the referring nurse and the nurse case manager at the payer. Four-eighty-fives [485s] don’t have a lot of information about the child," Thayer advises. And don’t forget referral sources after your patient dies. In addition to the bereavement support you offer families, write condolence letters to physicians and other professionals involved in the child’s care, he suggests.
• Maintain service continuity as much as possible.
Even seemingly minor things like changing beds or supply delivery schedules can create major stress for already overwrought families.
Establish subcontracts with other agencies and suppliers to avoid disrupting home routines and relationships whenever possible. Consider employing hospital nurses, not only to better serve particular patients, but to win their support for your overall program.
"They get to follow a kid they know; they also get to know your costs and restraints, and can advocate for you in the hospital," Thayer notes.
• Don’t turn consultations into pre-admission visits.
"If people perceive you’re only there to admit their child, they won’t be as open, or they’ll wait until they think they’ve reached the appropriate hospice referral point and it’s very late then," Thayer says.
"Focus on what can I do to help this family now?’ Let them know they’ve thoughtfully considered all issues, and made their child’s welfare paramount. That’s much more important than focusing on why don’t you come into our program.’"
Also, don’t open the consultative meeting with a discussion about death and dying. Start the conversation by asking the parents such questions as, "How is your child coping with this?" and, "What has your child been told?" Thayer recommends.
"Find out their story first. Don’t just rely on the medical record. Listen carefully to what they stress, what is important. That is the beginning to open up a much broader conversation with people."
From there, ask a series of questions to determine where the family is in terms of accepting their child’s impending death and the possible use of your services, Thayer suggests. For example:
• What kind of spiritual questions does this bring up for you?
• What keeps you awake at night?
• What do you think will happen to your child in the next year?
• What would make it better?
• Begin dialogue with families as early as possible.
"It helps to have a conversation before anyone thinks the child is going to die," says Faulkner.
Saying, This is an illness that children have died of. The doctors say you’re not, but have you ever considered what that means?’ may not make them more open to hospice services at the time, but may better prepare them in the long run.
"Afraid’ is used often in doctors’ language. When talking with a family, they say, I’m afraid your cancer has returned.’ At that point, the family is glad to know someone is comfortable discussing death," she adds. Thayer and Faulkner have found families more receptive to end-of-life discussions when their child is either failing or in remission.
• Use community resources.
Hospices often have strong community ties, particularly fundraising and volunteer support. Establishing other community collaborations may strengthen your program without taxing your own organizational resources. Look at providers with expertise that complements your own, and consider joint programs, sources advise. Churches and synagogues may enhance your bereavement service; through community organizations, you might access a counselor with pediatric developmental expertise.
Don’t attempt a joint on-call service, Thayer warns. "An adult nurse can’t do peds calls. You’ll be setting up one of the most critical links for failure."
• Work with payers.
Reimbursement hurdles may be just the last thing parents of terminally ill children want to deal with. However, both insurance and Medicaid pediatric hospice benefit parameters often rely on Medicare criteria. Providers and payers alike acknowledge that the course of children’s terminal illnesses and potential benefits from hospice service do not fit within the narrowly circumscribed Health Care Financing Administration (HCFA) definitions. Children’s Hospice International is collaborating with both HCFA and state Medicaid offices to develop pediatric-specific guidelines.
"HCFA and a number of state Medicaid offices are interested in and working towards federal funding for appropriate care for life-threatening conditions for families and children," says Ann Armstrong-Daily, founding director of Children’s Hospice International in Alexandria, VA.
Until there is more formal recognition of unique pediatric coverage, it is important to work closely with payers to get patients the services they need.
"It’s not that case managers are uncaring. You just have to help them with the criteria they’re accountable to. Saying hospice services will help avoid hospitalization is better than helping families cope better. It gives them something to work with," Thayer explains.
If you’re granted approval, however, "you better be able to keep the child at home, and not call the case manager back with, They’re so sick, they’ve got to go to the hospital,’" Faulkner warns.
Even with community collaborations, small programs with only a few patients may never reach the depth and breadth of service that you would like. However, "don’t think you have to be perfect. The program is important. If it’s not offered, the family regrets what could have been done, and you have an obligation to let it be known that it’s available," says Faulkner.
Reference
1. Children’s Hospice International. 1998 Survey: Hospice Care for Children. Alexandria, VA; 1998.
Sources
• Ann Armstrong-Dailey, founding director, Children’s Hospice International, 2202 Mount Vernon Ave., Suite 3C, Alexandria, VA 22301. Telephone: (703) 684-0330.
• Kate Faulkner, MD, Consultant in palliative care, and Paul Thayer, MA, MDiv, director of Palliative Care, Franciscan Children’s Hospital and Rehabilitation Center, 30 Warren St., Boston, MA 02135-3680. Telephone: (617) 254-5500.
You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
- Award-winning Medical Content
- Latest Advances & Development in Medicine
- Unbiased Content