Spicer et al in the article Introducing a lexicon of terms for paediatric palliative care published in 2015 in Paediatrics & Child Health defines Advance Care Planning as follows:
Advance care planning (ACP) is a process of discussions between families and health care providers about preferences for care, treatments and goals in the context of the patient’s current and anticipated future health. It may include preparation of an advance directive or other documents that reflect health care decisions.
In other words, advance care planning is a process of talking through important issues with all the relevant people and, together, making plans in anticipation of a change in the child’s condition in the future.
The main goal of the process is to get to know the patient, their illness, what complications may arise, what the child and family’s values are and how that could guide decision making before a crisis arises.
An advance directive is a document by which a person (over the age of 18 years) makes provision for health care decisions in the event that, in the future, he or she becomes unable to make those decisions. These are also known as Living Wills or Durable Power of Attorney for Health Care documents. These are not applicable to children under the age of 18 in South Africa.
Listen to paediatric palliative care doctor, Dr Mehnaaz Ally, talk about the value of advance care planning in children’s palliative care.
Advance care planning is not a once off event but an ongoing and ever evolving process. This process should begin as soon as possible along the trajectory of the illness but must be undertaken as soon as the healthcare providers identify that the child’s health is in a steady decline and the end-of-life is approaching.
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.
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.