Pediatric Palliative... what?

The recent summer issue of Quest, a research and health magazine published by the Muscular Dystrophy Association, includes an excellent article about pediatric palliative care*.

Even though the publication is written for individuals with neuromuscular or muscle diseases, the article includes some wonderful points about pediatric palliative care.  These points about pediatric palliative care are helpful for all children with life-limiting or life-threatening conditions and their families, as well as their doctors or care team:

• Palliative care for children means more than ‘end-of-life’ care.  The holistic approach to care “begins when a child receives a diagnosis, and continues throughout the child’s life, regardless of any treatment received.”
• Pediatric palliative care seeks to address not only the child’s comfort and quality of life, but also medical communication, decision making, access to resources, and the family’s emotional needs.
• Pediatric palliative care programs for children say “nothing about when, or even whether, the child will die.”  These programs provide support services that are part of the child’s overall care throughout the child’s life, beginning early on before the family reaches a crisis issue.
• Goals for a pediatric palliative care program are parallel with the family’s goals of seeking treatments or cures; pediatric palliative care services provide the family with social support and education while they are still “hoping and fighting, and seeking a cure.”
• Pediatric palliative care services help families address many difficult questions and conversations that may come up during their child’s care
• Pediatric palliative care services include

-       Managing pain and other symptoms

-       Addressing quality-of-life issues

-       Addressing the emotional, social and spiritual needs of the family

-       Educating adolescents about their condition, prognosis and treatment

-       Incorporating palliative care professionals into a child’s health care team

Pediatric palliative care initiatives, such as the project highlighted in the article, are developing throughout the country.  One of the doctors quoted in the article, Brian Tseng, said, “This isn’t something we’re taught in school, and it’s not experienced in practice unless you happen to spend time with people who are passionate about it.”

You can count on this:  Ryan House is passionate about pediatric palliative care and we look forward to welcoming children and their families in 2010!

*  Labbe, Amy (2009). The International Heartsongs Project:  Focusing on quality of life. Quest, 3, 55-57. 

The article is available online at: http://www.mda.org/publications/Quest/q163heartsongs.html

Did you know?

Did you know that in the United States, about 500,000 live with the challenge of a life-threatening condition?  In Arizona alone that equates to between 3,500 and 5,000 children.  Yet less than between 1% - 10% of children who need pediatric palliative care or end-of-life care receive it (Toce & Collins, 2003; Himelstein, Hilden, Boldt; Weissman, 2004).

While raising awareness for Ryan House at the Arizona Chapter of The American Academy of Pediatrics' conference last weekend, Holly heard many pediatricians and nurse practitioners comment, "Wow, this is so needed."  For attendees from out-of-state, the representative was able to share information about other pediatric palliative care homes and centers in the United States:  George Mark Children's House in San Leandro (Oakland), CA; Sarah House in Cincinnati, OH; Angels’ Place in Greater New Orleans and Jefferson Parishes, LA; and Circle of Life Children’s Center in Newark, NJ.

We’re pleased to share that Ryan House construction is progressing smoothly and the House will welcome its first families for scheduled, short term respite and quality-of-life stays in the spring of 2010.  Some say that in Arizona “Hope and Help have a New Home…” Yes, it is needed! 

Susie Says.....

The tag line of the Ryan House logo reads: hope, courage, love, care & friendship. Today I'm thinking about "hope".

It is my hope that those families that need to recharge their batteries will find their way to Ryan House. I personally cannot imagine the day to day requirements of being a parent of a child with life-limiting conditions. My children are all but grown now and I vaguely recall their infancy as a lot of work. What affects me the most about these families is there is NEVER a break. Their children can't have sleepovers, or playdates. Even when napping, they must be monitored. I know parenting is 24/7, but my children were able to grow to be independant. These children will never do that, and the 24/7 care they require never ends.

Hope is what Ryan House can provide to these families. Hope that they can recharge, refocus, and regroup with the rest of their family. Hope they can find the strength within themselves to deal with journey they've been given.

I am humbled by the valor these families demonstrate. They are an inspiration to me and my family.

Holly Says....

As much as Ryan House, and similar programs throughout the country, will promote a quality of life for those children visiting who have life-limiting or life-threatening conditions, care at the house will embrace siblings and parents or family caregivers as well.

When families care for a life-limited child, that care is often 24 hours a day over many years. Families can feel extremely isolated and under enormous emotional, physical and financial strain. Family relationships can suffer, a parent's career may have to be abandoned, well brothers and sisters often feel left out, and typical family activities can become impossible.

Whether by way of a relaxing moment in the spa, or by mixing slime and making a mess as typical children do, caregivers and siblings can enjoy life alongside others who are facing similar situations. In those moments, they can live knowing that, although life may be short, joy can be found in the years, weeks, days, hours, or even moments ahead...