The primary care team should lead the process. At least two health care professionals should be involved, especially when there are complex ethical issues and decisions need to be made to withdraw or withhold treatment. A specialist palliative care team, where available, can help guide the process. Other care teams or healthcare providers involved in the patient’s care (e.g. an oncologist, radiotherapist, neurosurgeons, nurses, social workers, allied health care workers) should also be part of the discussions if needed.
The parents, primary caregiver or legal guardian of the child must be part of the process and discussions. Sometimes there may be other family members who play a key role in care or decision making. For example, where parents are young, grandparents can be invaluable in the planning process. In some instances it may be possible to have important people join the conversation using video conferencing.
If a community-based organisation or home carers will be involved in instituting the plans, it is also useful, where possible, to include them as part of the team discussions.
Most importantly the child has a right to participate in decision making around her or his own care, whenever possible.
Advance Care Planning: What and Who
In this clip from Courageous Parents Network‘s virtual video interview with Brenda Murray, Brenda shares how palliative care helped her develop a plan to care for her son Sam entirely at home, including through his end-of-life.