Policy
Child and Young Person’s
Advance Care Plan
A unified collaborative approach
This document provides additional information for clinicians to help inform
discussions related to the Child and Young Person’s ACP (CYPACP) forms
(Version 4).
Should you have any ethical, legal or clinical queries about the CYPACP please
contact your local team for advice and training. The document should be
used alongside local Trust policies and guidelines.
It is the responsibility of the clinician to keep abreast of relevant ethical, legal
and professional guidelines and developments that may impact on the use of
the CYPACP document.
Guidance
The Child and Young Person’s Advance Care Plan (CYPACP) is a summary
document that facilitates the clear and concise communication of the wishes of a
child or young person (and their families), who have chronic and life-limiting
conditions:
It sets out an agreed plan of care to be followed when a child or young person’s
condition deteriorates.
It provides a framework for both discussing and documenting the agreed wishes
of a child or young person and his or her parents, when the child or young person
develops potentially life-threatening complications of his or her condition.
It is designed for use in all environments that the child encounters: home,
hospital, school, hospice, respite and emergency care.
The CYPACP can be used as a resuscitation plan and as an end-of-life care
plan.
It remains valid when parent(s) or next of kin cannot be contacted.
It incorporates the ReSPECT form as a summary for those geographical areas
where ReSPECT has been adopted. A version with an original style page for the
management of cardiopulmonary arrest is still available for areas that have not
transitioned over to ReSPECT. (Legacy Version)
The CYPACP is intended to support and enhance the delivery of the best possible
care to the child or young person and their family. The document can be used
flexibly and is likely to change over time.
The CYPACP can be used for a person under the age of 18 years old. After the age
of 18 years, the use of an Advance Care Plan and/or Lasting Power of Attorney for
Health and Welfare can be considered. The CYPACP document can be used to plan
and state the wishes of a child that is likely to need medical intervention at delivery
and is known to have a life-limiting condition.
Decision-making
A child or young person should be involved in the decision-making process where
possible and reasonable; their wishes listened to and taken into account about
issues that affect them.
It is important that clinicians using the CYPACP document are clear about the roles
and responsibilities of parents in relation to decision-making on behalf of a child and,
potentially, the developing ability of a child to be able to make decisions about their
healthcare as they mature. Clinicians must be able to assess the capacity of a child
or young person below the age of 16 years and adhere to the Mental Capacity Act
(2005) relating to decisions for a young person that is 16 years old and older.
Information about the consent and the roles of parents in this process can be found
in GMC guidance or directly from statutory law, including the Children Act (1989).
The GMC document
0-18 years: guidance for doctors provides valuable information
about consent, confidentiality and parental responsibility which should be used in
conjunction with the NICE guidance for end of life care for infants, children and
young people with life limiting conditions (NG61, 2016 and QS160).
Parents and clinicians are required to act in the child’s
best interests when making
decisions on behalf of or with a person under the age 18 years. This is described in
the General Medical Council (GMC) ethical guidance for doctors working with 0-18
year old as follows:
An assessment of best interests will include what is
clinically indicated in a
particular case.
You should also consider:
a. the views of the child or young person, so far as they can express them,
including any previously expressed preferences
b. the views of parents
c. the views of others close to the child or young person
d. the cultural, religious or other beliefs and values of the child or parents
e. the views of other healthcare professionals involved in providing care to the
child or young person, and of any other professionals who have an interest in
their welfare
f. which choice, if there is more than one, will least restrict the child or young
person’s future options.
This list is not exhaustive. The weight you attach to each point will depend on the
circumstances, and you should consider any other relevant information. You should
not make unjustified assumptions about a child or young person’s best interests
based on irrelevant or discriminatory factors, such as their behaviour, appearance or
disability (GMC 0-18 years).
When there is a divergence of opinion about the type of medical intervention that
represents a child’s best interests, parents and clinicians should work together to
resolve the disagreement as far as possible, with the child’s welfare considered of
paramount importance. Parents and clinicians have a moral and legal duty to protect
children from significant harm. If local resolution is not possible, it may be
appropriate to seek a second opinion, consult a Clinical Ethics Committee and
consider mediation. The Royal College of Paediatrics and Child Health (RCPCH)
have published guidance on both Conflict Resolution and Withholding and
Withdrawal of Life-sustaining treatment which can be found on the RCPCH website.
Do not attempt cardio-pulmonary resuscitation (DNACPR)
Whatever the prognosis and advance decisions that may be in place, the child’s
comfort should always be a primary consideration. Every attempt should be made to
minimise distress and to fulfil the child and the families’ wishes wherever possible.
Attempted resuscitation should be the default action for all children, unless there is a
valid DNACPR decision in place. If there is any doubt about the validity of a
DNACPR decision, then resuscitation should be initiated.
Clinicians should adhere to a valid DNACPR in the event of a life-threatening change
in the child’s clinical condition, unless this is a potential y reversible cause such as
choking or anaphylaxis, or a person with parental responsibility changes their mind.
The recorded DNACPR decision should, therefore, be considered in context. As the
clinical picture of the child/young person evolves, DNACPR decisions should be
reviewed appropriately.
DNACPR applies
only to CPR. Other types of resuscitation can be described in the
CYPACP document and considered independently of CPR decisions.
Summary
The CYPACP documents the collaborative wishes and plans of decision-makers
about children and young people with chronic or life-limiting conditions. The
conversations and documentation of decisions should be considered within the
ethical, legal and clinical frameworks that guide clinicians working with this group of
children and young people.