An American perspective on palliative care
As part of our wider conversation to inform the development of our new strategy we will be publishing a series of blogs reflecting on what great children’s palliative care should look like in 2028, what needs to happen to get there and what Together for Short Lives’ role could be in achieving that. Today we hear from Kenneth Pituch, the Medical Director of the Pediatric Palliative Care Program at the CS Mott Children's Hospital in Michigan
Early in her nursing career in the 1980’s Maureen Giacomazza worked in a children’s hospital intensive care unit in Michigan, USA. Most months, she and her nursing colleagues would be caring for at least one very sick and complicated patient whom they knew would not be able to survive to discharge.
She and the other beside nurses would try their best to support families. Sometimes the continuation and escalation of therapies would go on for weeks, until the light at the end of the tunnel would appear in the form of the one ICU attending (out of seven) who was able to connect with parents, ascertain their values, and often redirect the goals of care to comfort, de-escalation, and a peaceful death.
With a conviction that this type of care and these conversations should not be happening only one week out of seven, Maureen took a leave from her ICU job and jumped ‘across the pond’. She spent five years working in a paediatric (now with the extra ‘a’) intensive care unit at the Great Ormond Street Hospital in London. In her years in Britain she studied ethics and had a chance to witness the development of hospital based palliative care for children in the early 1990’s.
Maureen returned to Michigan armed with the knowledge that ‘we can do better’. She became the catalyst in forming the palliative care services at the University of Michigan Hospitals, including the CS Mott Children’s Hospital, where Maureen recruited me into the world of pediatric palliative care in the early 2000’s. With an outstanding small team, we have grown a hospital-based palliative care service that now consults on over 700 children per year. We have trained dozens of physicians, nurses and social workers who are steadily improving care and decision support so important to our sickest patients.
At Maureen’s urging two years ago I took advantage of a sabbatical opportunity. I received an invitation from Katrina McNamara of Together for Short Lives to spend four months as a visiting professor in the UK. Between July through October, 2015 I visited 10 children’s hospitals in England, Wales and Scotland and spent several days in 8 of Britain’s remarkable children’s hospices. What I learned was amazing!
At children’s hospices in Oxford, Cardiff, Scottland, Loughborough, Hampshire and greater London I was warmly greeted and made to feel at home by professionals, parents and patients.
Each was inspiring.
With 90% of their operating costs raised through creative fundraising, each of these organizations demonstrated outstanding end-of-life care. But more impressive and surprising was the long term relationships these children and their parents developed over time with the hospices’ nurses, therapists, care-givers and social workers.
During visits at each of these hospices from Rachel House in Scotland to Naomi’s House near Winchester, I learned that UK hospices provide much more than end-of-life support. At each impressive facility, I met up to a half dozen or more children or young adults on ‘short breaks’ sometimes with but often without their parents. The facilities were comfortable, set up for therapeutic and enjoyable activities to benefit not only for the special needs child, but for the siblings. This respite care model is just beginning to catch on in the USA. However, no one here has been able to replicate the generous philanthropic support that sustains each of them year after year.
Britain’s hospice teams are also ensuring that paediatric specialists, school personnel, ambulance crews, and A&Es, are all able to share updated advanced care plans for the vulnerable children that they serve.
I returned to Michigan in November, 2015 and over the last 16 months I have been gathering allies in an attempt to initiate in my state of Michigan a program that will approach the outstanding care I saw on my four month journey.
Pediatric palliative care and hospice programs in the USA lack uniformity, but there are many bright spots – particularly in the area of home based end-of-life care. Most children’s hospitals now have embedded palliative care teams now recognised as indispensable in supporting the complex, chronic children in pediatric intensive care units and oncology wards.
Maureen’s vision of better care and decision-support in the hospital is steadily becoming the norm rather than the exception. Both of us acknowledge the contribution of the British in inspiring our efforts and our successes. Together for Short Lives’ efforts to promote world-class out–of-hospital services continue to make the UK our gold standard for how a program for these children and families deserves to be replicated.
Thank you, Mother Country!
PS: Maureen wears her TFSL Butterfly Badge to work every day!
What do you think?
Tell us what you think of this vision for Children’s Palliative Care by posting a comment below. You can share more detailed comments by completing this short survey. You can also submit your own blog to support this series by emailing email@example.com.
We are keen to hear from as many people as possible, so do share this blog with your stakeholders and networks. You can also engage with the conversation on Twitter, using the hashtag #forthe49000