The United States is considered a leading First World country, but is lagging behind many other developed countries when it comes to death and dying. The US ranked 9th out of 80 countries on the Economist’s Quality of Death Index for 2015. The US is renowned for high quality end of life care but is behind in terms of affordability and the number of specialists – in the US for every 1200 patients dying in 2011, there was only one qualified doctor. Although there have been efforts in recent years to address these worrying statistics, one group of patients have been left out: the kids.
In the US approximately 41 000 children and young adults die each year from a variety of illnesses. Many of them need palliative care, however the number of dying children is often overlooked in comparison to the over 2.5 million adults who die each year and also need palliative care. As a result the low demand for children’s palliative care in comparison to adult palliative care has made it more challenging to set up palliative care programs for children.
Suzanne Gwynn, paediatric palliative care nurse and founder of Ladybug House says, “Most paediatricians want to focus on kids getting better. So they don’t want to move or pay large sums to go back to school for the training they would need to help kids die. And doctors already specializing in hospice care for adults aren’t a perfect solution either.” Without doctors, nurses and social workers trained in children’s palliative care and grief, families can feel unsupported. Gwynn continued to say, “In addition to wading through their sadness, families want to try find joy in the time they have left. Specialized providers are ready to make this happen, whether it’s by packing up pain medications to take on family trips, or suspending treatment so a teenager can go to prom. Without specialized providers who can plan for such events, some of this moments can be missed.” However palliative care services for children are still scarce.
One of the biggest challenges for paediatric palliative care providers is insurance. Many palliative care programs aren’t sufficiently reimbursed by insurance companies, the problem is only exacerbated in paediatric palliative care as it is more expensive. Children suffer from more complex conditions which needs intensive management over a longer period of time. Children also need a more diverse multi-disciplinary team made up of social workers, art therapists, dentists and other forms of support, and this is often not the case with adults.
Gwynn has tried for years to open Ladybug House in Washington State. Gwynn dreams of a large estate that would allow families from rural areas across the Pacific Northwest to live in Seattle, which is close to the regions only children’s hospital but still somewhat feel like they’re at home. Unfortunately insurance companies have been reluctant to finance such an elaborate project.
The most effective method of providing children’s palliative care in the US is still very much up in the air, but the recognition of there being a problem is a positive move in the right direction. Click here to read the full article.