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Child Health Guideline Identifier

Palliative care - allow natural death (Te Wa Aroha)

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The purpose of this guideline is to ensure that children who have life limiting illnesses have a clear plan in place for end of life care.

Treatment

Decisions

This policy draws from the RACP Policy - Decision-Making at the End of Life in Infants, Children and Adolescents and recommends this document be used as a guideline and resource. (https://www.racp.edu.au/docs/default-source/advocacy-library/decision-making-at-the-end-of-life-in-infants-children-and-adolescents.pdf)

It agrees with the cornerstones of good decision-making being collaboration, effective communication and cognisance of the ethical principles relating to children, along with an understanding of the developmental stage of the child.

Where cardiopulmonary arrest or death is considered a likely possibility in a child with a known condition, it may be felt that some or all medical interventions including Cardio-Pulmonary Resuscitation (CPR) may not be appropriate in the event of an acute deterioration. This is because of the imposed burdens on the child and outcomes outweigh the potential benefits.

The management plan is the responsibility of the lead paediatrician/surgeon and must, wherever possible, be fully discussed with the:

  • Parent or guardians (first priority)
  • Child (at a level appropriate to the competency of the child)
  • Any family/whanau members appropriate to include in this collective discussion
  • Ward medical, nursing and allied health professionals

This management plan may change over time depending on circumstances but each change requires further discussion. Decision-making in this situation does not lend itself to a prescriptive approach, but requires an individualised style determined by the facts of each case. Decision-making must take into account the cultural values & beliefs of patients, particularly the spiritual essence of allowing a natural death. Discussions are best held at the earliest opportunity as there is good evidence to suggest that this improves quality of life through timely access to palliative care, often allowing the child and their family/whanau to express their wishes and achieve personal goals.

Continuum

A decision to Allow Natural Death does not indicate a withdrawal of care, and in addition to agreed interventions the child will continue to  receive:

  • Prompt assessment and management of pain and other distressing symptoms
  • Other comfort measures including emotional, cultural and spiritual support
  • Privacy and respect for the dignity and humanity of the child and their family
  • Management of hydration and nutrition needs as appropriate to the circumstances
  • Oral and body hygiene

It is important to emphasize to the child and their family what can be done rather than focusing on negative statements.

The discussion of options can benefit from the use of terminology such as: 

  • "Allowing a natural death" and
  • "Continuing care"

Avoid negative statements such as:

  • "There's nothing more we can do" or
  • "Not for resuscitation"

Management plan

Documentation

  • The management plan must be clearly documented on the Advance Care Plan and placed in the clinical notes. This must be written by the lead paediatrician/surgeon or proxy senior health care professional. This is not to be delegated to junior staff.
  • The plan should indicate medical interventions that could be appropriate, in the event of deterioration including cardiorespiratory arrest, as well as interventions that are unlikely to be of benefit. For example the plan may specify suctioning of the airway and oxygen administration, but exclude assisted ventilation and CPR.
  • Daily progress notes should refer to the plan, including its date, and should clearly indicate any minor changes to the plan.
  • The plan must be reviewed in full:
    • At least, once each week
    • Immediately, if substantial changes are to be made
    • At each subsequent presentation to hospital.
  • The form should be signed by the lead paediatrician/surgeon proxy senior health care professional at each review. However, in the circumstances of a child with a prolonged hospitalisation where the parents/guardians wish to continue the plan as a standing order and do not wish to discuss the order weekly, their wishes should be respected. This must be documented clearly in the medical record.

Note: The form 'Starship Advance Care Plan' (CR9199) must be printed and not photocopied to ensure that it is accurately filed in the electronic record. The form can be downloaded here

Communication

  • As indicated above, the plan will be fully discussed with ward medical, nursing and allied health professionals, parents or guardians, family/whanau members and, where appropriate, with the child, maintaining a focus on family-centred care.
  • It is important that communication with the family & patient is in the language best understood by the family and delivered by staff who have at least developed some rapport with them.
  • At the outset, the written details of the plan will be discussed with ward nursing staff, and, if necessary, further details provided to avoid any ambiguity or difficulty in interpretation.
  • Ward nursing staff will ensure the plan is communicated to any nursing staff subsequently caring for the child, as well as to medical staff attending the patient who may not be familiar with the plan.
  • An Advance Care Plan (CR9199) must be sent to Clinical Records along with a clinical ALERT (CR0008) for flagging in CRIS. When the child is an inpatient a hard copy must be located at the front of the clinical record.
  • A copy is given to the family, paediatric team (if different to the Starship service), GP and ambulance service on the child's discharge home.

Dispute resolution

Contacts

In the case of disagreement between the family and the ADHB health professionals following discussion of the plan to limit life-sustaining treatment, staff concerns can be raised with the:

  • Legal Counsel, ADHB
  • ADHB Ethics Committee
  • Starship General Manager
  • Nationwide Health Advocacy Service

In an acute after-hours situation, the Clinical Nurse Manager is to be informed and can assist in coordination of contacts or other support as required.

Regardless of any opposing view that one (or both) parents or a legal guardian may take at this point, continued inclusion, acceptance and support is essential. The family are to be informed what further steps the Medical Team will undertake as appropriate e.g. temporary stay of decision, seeking of and the provision of a second opinion, referral to Legal Counsel, Ethics Committee, General Manager, or notification of Clinical Nurse Manager.

The family are to be advised of and assisted as appropriate to make contact with the Nationwide Health and Disability Advocacy Service.

If not already in place, the family are to be referred to the Social Worker assigned to the area or the after-hours on-call Social Worker for priority consultation. The family also has the option of seeking their own independent legal advice at any time

Documentation

Advice provided to the family shall be documented in the clinical record.

Definitions

The expression CPR includes a number of treatment options including:

  • Rescue breathing
  • Cardiac compression
  • Tracheal intubation
  • Electrical cardioversion
  • Resuscitation medication

Associated documents

Reference

Children's Hospital at Westmead: Allow Natural Death by limiting use of Life Sustaining Treatment

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Document Control

  • Date last published: 15 November 2018
  • Document type: Clinical Guideline
  • Services responsible: Paediatric Palliative Care
  • Owner: Ross Drake
  • Editor: Greg Williams
  • Review frequency: 2 years

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