The late Reverend Chuck Meyer worked as Chaplain at St David’s Medical Centre in Austin, Texas. The Reverend Meyer asked why we still use the terminology “Do Not Resuscitate” when we discuss dying and death with patients and their families. He suggested that people hear the “not” in “Do Not Resuscitate” and that they may not understand that “asking for a DNR does not mean that we have stopped care.” The Rev Meyer then asked why we do not use Allow Natural Death as an alternative when discussing end-of-life care planning.
The Paediatric Palliative Care Team at Starship Children’s Hospital in Auckland, New Zealand, began using “Allow Natural Death” when talking to families. Our experience has been that while these discussions remain very difficult, families do engage much more readily in end-of-life planning from the “Allow Natural Death perspective.” A presentation of our experience was developed and presented at conferences in The United States and at Westmead Children’s Hospital in Sydney. Dr John Collins team at Westmead developed policy and an e-o-l form which incorporates the Allow Natural Death language. Starship Children’s Hospital gained permission from Westmead to adapt the form for use in New Zealand. One important change that was made to the New Zealand document was to ask for Allow Natural Death to be translated into Te Reo (Maori language). The title the document was given is Te Wa Aroha which translates to “the time of love.” Interestingly, we have discovered that families respond well to that simple translation of Te Wa Aroha as it speaks to the intent of end-of-life discussion which is “to prevent suffering and promote comfort, quality of life and dignity” ( Parental Hopeful patterns of Thinking, Emotions and Pediatric Palliative Care Decision Making...www.archpediatrics.com).
Our experience with using the document over the past year has borne out the late Reverend Meyer’s thinking about family understanding of end-of-life decision making. Reframing e-o-l discussions with positive language appears to lead into a wider discussion about family wishes for their child, both for living the rest of the child’s life as well as for dying. Health Professionals at Starship have welcomed the document which they are using as a guide to these difficult discussions as well as for the formal documentation of parent wishes. However, the most powerful voices we need to listen to are our families and our growing experience with the Starship e-o-l document tells us that they understand this language and more openly engage with the conversation. Hopefully the continued use of Allow natural death in end-of-life decision making will enable parents to look back on these conversations and recall that there was a strong “sense of empathy” which supported them to make the best possible decisions for their child and family.
Jess Jamieson, New Zealand