Children who receive palliative care have increased hospice length of stay, according to a recent study.1

“This topic has been a burning issue for me since I started looking at pediatric end-of-life care almost a decade ago,” says Lisa Lindley, PhD, RN, the study’s author. Lindley also is an assistant professor at The University of Tennessee’s College of Nursing in Knoxville.

The research looked at the effect of 2010 California legislation that allows children in some counties to receive both curative and supportive care after diagnosis of a life-threatening serious illness.1

“When there is an opportunity to empirically look at how state and federal policies have affected the care of kids, you’ve got to jump at it,” says Lindley. Using 2007 and 2010 California Medicaid data, she analyzed hospice use changes for children who resided in that state’s pediatric policy counties, compared to those who did not.

Overall, more than 10% of children enrolled in hospice care, with an average of less than three days of hospice care. The policy was positively associated with increasing days in hospice care. “I was happy that the policy did, in fact, impact length of stay for hospice care,” says Lindley.

The palliative care policy had no effect on hospice enrollment. In conversations with multiple clinicians practicing in California, Lindley gleaned some insight into a possible reason for this finding. “Many times, palliative care programs in the state are so supportive, that it’s enough for families,” she explains. “They don’t need hospice right away.”

Other researchers are looking at the California legislation from a cost perspective. “When we combine all this research, we are able to paint a picture about what’s going on here,” says Lindley.

The study has important implications as states consider their own approach to palliative care, and also at the federal level. Under the Affordable Care Act (ACA), all state Medicaid programs are required to pay for both curative and hospice services for children under age 21 who qualify.

“It doesn’t go as far as the California law. You still need a ‘six months to live’ diagnosis, but you don’t have to give up therapy or treatment,” says Lindley. “This can inform regulators who are considering whether to save or scrap the ACA.”

Important social justice issues were raised by the study’s findings. “The policy is geographically defined right now. Only certain counties have access to this policy,” notes Lindley. Policymakers selected counties with high mortality and good access to hospice care. “From an ethics standpoint, issues of environmental justice come into play here,” says Lindley.

Field Is Catching Up

Policies promoting palliative care are critical to ensuring access to hospice care for children. “Obstacles to children receiving palliative care include a combination of factors,” says Jane Jankowski, DPS, MSB, LMSW, director of clinical ethics at Alden March Bioethics Institute at the Albany (NY) Medical Center.

A societal reluctance to acknowledge the uncomfortable reality that children do, in fact, suffer from life-limiting diseases is one barrier. Lack of healthcare providers with the necessary expertise is another.

“Though there are more programs emerging for children, it is likely that the field is still catching up,” says Jankowski. Historically, the development of programs for palliative care for children has lagged behind those designed for adults. Thus, access may be limited to geographic regions closest to major children’s hospitals.

“Funding, training, and institutional support are essential for these programs to take root and grow,” says Jankowski.

Community awareness and support also are important. “Many families will continue to care for sick children at home, and need home-based palliative care services,” notes Jankowski.

Home care agencies, primary care pediatricians, and hospice programs must work together to deliver high-quality palliative care to children. “All need the support and guidance of expert pediatric palliative medicine practitioners in order to do so,” says Jankowski.

Ethicists can support access to pediatric palliative care in the following ways:

Discussing moral dilemmas with patients, families, and caregivers who are grappling with difficult healthcare decisions.

“This may include education about palliative care programs, particularly where there are concerns about suffering for the patient,” says Jankowski.

Discussing and establishing a plan of care that balances the benefits and burdens to the child.

“This can open the door to discussing palliative care,” says Jankowski.

REFERENCE

  1. Lindley LC. The effect of pediatric palliative care policy on hospice utilization among California Medicaid beneficiaries. JPSM 2016; 52(5):688–694.

SOURCES

  • Jane Jankowski, DPS, MSB, LMSW, Director of Clinical Ethics, Alden March Bioethics Institute, Albany (NY) Medical Center. Phone: (518) 262-7125. Email: jankowj@mail.amc.edu.
  • Lisa Lindley, PhD, RN, Assistant Professor, College of Nursing, The University of Tennessee, Knoxville. Phone: (865) 974-0653. Email: llindley@utk.edu.