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3.9.2 Withholding or Withdrawing Life Support for Children

Contents 

1. Introduction
2. The Reasons Why A Protocol Is Needed
3. When Does The Issue Arise?
  3.1 Withholding or the Withdrawal of Life Sustaining Medical Treatment
  3.2 Do Not Resuscitate (DNR)
4. Is Consent Required?
  4.1 Who Can Provide Consent?
5. Legal Responsibilities of the Local Authority Parent 
  5.1 Full Care Order
  5.2 Interim Care Order
  5.3 Emergency Protection Order 
6. Hospital’s Responsibilities
7. The Procedure
  7.1 The Hospital’s Role
  7.2 The Children’s Services Authority’s Role
  7.3 Where Consent Is Not Required
  7.4 Where Consent Is Required
8. Flowchart
9. Section 20 / Abandoned Children
10. Removal, Storage and Use of Human Organs
11. Procedures Following the Death of a Child Subject to a Care Order


1. Introduction

This document is a protocol to be adopted by the Redbridge Children’s Services Authority.

The aim of this protocol is to provide practical guidance to social work practitioners when a child who is the subject of a statutory order made under section 31 Care Order, 38 Interim Care Order or 44 Emergency Protection Order of the Children Act 1989 becomes the subject of a “Do Not Resuscitate (DNR)” status or withholding or withdrawing life sustaining medical treatment.

This protocol also provides guidance in situations where a child is Accommodated for the purposes of section 20 of the Children Act 1989 or abandoned. A distinction must be made between children subject to an order and those who are not, as in the case of the latter, the Children’s Services Authority do not share/hold Parental Responsibility and therefore our powers and duties are limited.

This protocol should be read in conjunction with the guiding principles set out in up to date relevant clinical guidance relied upon by health professionals. The key current guidance is contained in the following documents:

  • By the General Medical Council “Withholding and withdrawing life-prolonging treatments: Good Practice in decision making”; and
  • By Royal College of Paediatrics and Child Health “Withholding or Withdrawing Life Sustaining Treatment in Children: A Framework for Practice”.


2. The Reasons Why A Protocol Is Needed

The Local Authority, in its role as a statutory parent, is involved in the decision making process when a child, who is the subject of an order  requires medical treatment.

Social work practitioners are sometimes faced with dilemmas as to whether it is in the best interest of the child/patient to start or continue treatment. These dilemmas can arise in cases concerning the possible application of advanced techniques of life support. The application of such techniques can have the potential in some cases to be able to sustain life artificially, where there exists little or no hope of recovery. In other cases their application may have the effect of simply prolong the dying process and of causing unnecessary distress to the patient.

This protocol sets out the Local Authority’s decision-making process and establishes clear guidelines for social workers to follow when faced with such difficult decisions.  

This protocol is intended to assist the following social work teams in the Children’s Services Authority:

  • All staff working with children and their families within the Children and Families Service;
  • Staff within specialist teams;
  • Out of hours social work teams.


3. When Does The Issue Arise?

Once a patient is admitted to hospital, the medical staff is under a positive duty at common law to care for the patient. A fundamental aspect of this positive duty of care is a duty to take such steps as are reasonable to keep the patient alive.

However, the clinical team in charge of the patient’s care have an ethical obligation to ensure that the benefits of a particular treatment outweigh any burdens or risks associated with the treatment. Therefore, there are certain circumstances that may absolve a doctors’ positive duty to keep the patient alive.

The current guidance and case law suggest that, where it has been decided that a treatment is not in the best interests of the patient, there is no ethical or legal obligation for the treating clinicians to provide it. In such situations, there are two distinct treatment options that the hospital may need to consider:

Withholding or the withdrawal of life sustaining medical treatment - this is where the hospital is proposing to transfer life-sustaining care to palliative care.

Do Not Resuscitate - Cardiopulmonary resuscitation (CPR) is a process of restarting the heart and lungs of a patient. If a patient is the subject of a DNR status, the hospital will not attempt CPR and therefore there will be no further treatment.

3.1 Withholding or the Withdrawal of Life Sustaining Medical Treatment

In 1997 the Royal College of Paediatrics and Child Health (RCPCH) produced a framework for practice in relation to withholding or withdrawing life saving treatment in children. This was subsequently updated in May 2004. The framework reports that there are five situations where it may be ethical and legal to consider withholding or the withdrawal of life sustaining medical treatment.

These are:

  • The “Brain Dead” child - (1) Where the criteria of brain - stem death  are agreed by two practitioners (2). It is agreed within the profession that treatment is such circumstances is futile and the withdrawal of current medical treatment is appropriate;
  • The “Permanent Vegetative State” - A child who develops a PVS status is reliant on others for all care and does not react or relate with the outside world;
  • The “No Chance” situation - The child has such severe disease that life sustaining treatment simply delays death without significant alleviation of suffering. Treatment to sustain life is inappropriate;
  • The “No Purpose” situation - Although the patient may be able to survive with treatment the degree of physical or mental impairment will be so great that it is unreasonable to expect them to bear it;
  • The “Unbearable” situation - The child and/or family feel that in the face of progressive and irreversible illness further treatment is more than can be borne. They wish to have a particular treatment withdrawn or to refuse further treatment irrespective of the medical opinion that it may be of some benefit.

In situations that do not fit within these five categories, or where there is uncertainty about the degree of future impairment or disagreement, the child’s life should always be safeguarded in the best possible way by all in the Health Care Team, until these issues are resolved (3).

3.2 Do Not Resuscitate (DNR)

Where a patient is already seriously ill with a foreseeable risk of cardiopulmonary arrest, or a patient is in poor health and nearing the end of their life, a decision about whether to attempt CPR could arise.

When considering the withholding or withdrawing of life support, the issue facing the Children’s Service Authority is whether to endorse the change in the treatment plan from actual treatment towards palliative or terminal care needs. In circumstances where DNR arises, there is no treatment plan. As such the Children’s Services involvement is whether or not to endorse the hospital recommendations not to treat the patient. 


4. Is Consent Required?

The courts have accepted that where the withdrawal of life-sustaining treatment was in accordance with good medical practice and was appropriate in the clinical judgement of the doctors responsible for the patient’s care and best interests, it would be lawful to discontinue such treatment even though it would bring about the death of a patient (4). This is the minimum legal requirement.

When withdrawal or DNR is an option that has been raised by the clinical team, the hospital must then consider whether “consent” is sought to authorise the proposed action.

The guidance suggests that it is best practice to seek patient and/or parental consent in respect of a proposed treatment plan or non-treatment plan, and in the case of DNR, if the option is available (5).

Usually in cases of doubt, the clinical team would seek the consent of the patient or those who have authority to consent on behalf of the patient.

4.1 Who Can Provide Consent?

Once a child reaches the age of 16, they are presumed in law (6) to be competent to give consent for themselves for their own surgical, medical or dental treatment, and any associated procedures, such as investigations, anaesthesia or nursing (7). Therefore the child should be treated as an adult.

Children under the age of 16 can be considered competent to give valid consent to a particular intervention if they have “sufficient understanding and intelligence to enable him or her to understand fully what is proposed”, otherwise known as Gillick competence (8). Subsequent court rulings have retreated from the original Gillick level of respect for the competent child’s views and have reaffirmed parents’ rights of consent as a necessary legal protection when doctors care for minors.(9)

If a child is aged 16/17 or under 16 and is not competent to consent for themselves; consent must be sought from a person/body with Parental Responsibility

Wherever possible consensus between the medical professionals, families and Local Authority should be achieved. In circumstances of dispute or where parental consent is required, it is clear from the guidance (10) that it is essential to safeguard the child’s life in the interim.


5. Legal Responsibilities of the Local Authority Parent 

General

The Children Act 1989 provides an overall statutory framework for the provision of children’s welfare and services but makes no specific provision concerning withholding or withdrawing treatment. The bundle of parental rights and duties which is comprised in “parental responsibility” under the Act includes the right to consent to the giving or withholding of medical treatment. The Act does specifically provide that:

  • The child’s welfare is paramount; (11)
  • Particular regard should be paid to the ascertainable wishes and feelings of the child; (12)
  • Children of sufficient maturity and understanding may be allowed to refuse medical or psychiatric examination or other assessment (but only for the purpose of a Child Assessment Order (section 43 (8)) or an Emergency Protection Order (section 44 (7).)

The practitioners must bear in the mind the above principles at all times when considering the issue of DNR or the withdrawal / withholding of life support.

A social worker will only become involved in decisions of a child/young persons medical treatment if the child / young person is subject to the following: 

  • An interim / full care order (section 31 and 38 of the Children Act 1989);
  • An emergency protection order (section 44 of the Children Act 1989).

5.1 Full Care Orders (13)

If the local authority obtains a full care order, it gains Parental Responsibility  and by virtue of the order, it is empowered to give consent to medical treatment matters on behalf of a child.

However the effect of a care order goes further and provides the Local Authority with the power to restrict the natural parents’ authority or that of any other person who would normally carry such authority. This is clearly stated in section 33 of the Children Act 1989:

“While a care order is in force with respect to a child, the local authority designated by the order shall:

(b) have the power (subject to the following provisions of this section) to determine the extent to which a parent or guardian of the child may meet his parental responsibility for him.

(4) The authority may not exercise the power in subsection (3)(b) unless they are satisfied that it is necessary to do so in order to safeguard or promote the child’s welfare.”

This is also reflected in the RCPCH guidance:

“If the Local Authority achieves a care order it gains parental responsibility and the power to restrict the natural parents’ authority or that of any other person who would normally carry such authority.

Patents can appeal to the High Court and to the Court of Appeal”(14)

The DOH Guidance Document “Seeking consent: working with children”, page 19 also recites a similar wording.

Therefore, by virtue of section 33 of the Children Act 1989, the local authority has the lead role in determining matters of consent for children who are in statutory care. The local authority should always involve the parents in taking part in the process of determining consent. Where a child is cared for by a parent whilst in statutory care that parent has a separate ability to do what is reasonable to promote the child’s welfare (15).

5.2 Interim Care Order (16)

An interim care order has the same effect as a full care order, subject to the courts powers to make directions for assessment or for the duration of the order (17). This the approach endorsed in the matter of Re K (A Minor) (18), where it was held that in the case of a seriously ill child who was the subject of an ICO, the parents were not legally able, without the agreement of the local authority, to make a decision to consent to the withdrawal of the treatment. In this case a declaration was sought and obtained from the High Court that the treatment should be withheld. 

The Children’s Services Authority should act in accordance with it is powers and duties under section 31 and 33 of the Children Act 1989. However, bearing in mind an ICO is subject to renewal every 28 days, it would be prudent to ensure that the parents and court are aware of the issue and where-ever possible consensus is achieved with the parents and the child’s guardian in the care proceedings, failing which directions from the court should be sought.

5.3 Emergency Protection Order (19)

An Emergency Protection Order is by its very nature a short term protective remedy for a child.

Whilst the Children Act 1989 specifically states that the applicant has parental responsibility during the continuance of the order (20), if a local authority obtains an EPO in relation to a child, it does not affect the parental responsibility on any other person, save to the extent that the order authorises the applicant/local authority to take specific action in relation to the child, such as removal of a child, medical examination or as otherwise directed (21). The local authority which has obtained an EPO does not therefore have the same lead role in respect of determining matters of medical consent as it has under a full or interim care order.

During the continuance of an EPO, a local authority can only act as is reasonably required to safeguard or promote the child’s welfare, having regard that this is only a short order. In matters of dispute, please refer to section 9.3 of this protocol.


6. Hospital’s Responsibilities

If a child or young person falls within one of the 2 categories listed in section 5 above, and is admitted into hospital with a life threatening condition, this protocol should be observed.

In the cases of a planned withdrawal of CPR or withholding or withdrawing artificial nutrition and hydration, the hospital will ensure: 

  • That an appropriate and clear plan is identified for the child;
  • That this is communicated  to the CSA social workers at the first available opportunity to  enable them to determine the CSA’s formal position with the benefit of its own advice as necessary;
  • That every possible option has been considered with a view to sustaining life;
  • That there exists good co-operation and communication between children’s services, hospitals, children and their families to facilitate collaborative decision making at a difficult and sensitive time;
  • That it will improve and develop an appropriate support service to children and their families.


7. The Procedure

7.1 The Hospital’s Role

Stage 1: Relevant Persons to be notified 

Once the clinical team/leading doctor has formed a view that a child who is in statutory care should be the subject of a DNR status and/or the issue of withholding or withdrawing life support written notification of this must be circulated to the responsible Children Services Authority’s relevant Team Manager. The notification must set out the following:

  • The clinical recommendations of the leading clinician and or team in respect of the child;
  • Whether parental consent to the action  is perceived to be required or not, and if not the clinical guidance which is relied upon to justify that conclusion.

Stage 2: The Planning Meeting

A Planning meeting must called by the hospital to discuss the hospital’s view as soon as possible after the notification has been given.

Present at the meeting should be the Children Services Authority (team manager and social worker) any parent or guardian whose PR has been displaced by the existence of a care order and the relevant treating clinicians.  

At the Planning Meeting, the leading treating Consultant must circulate a written report clearly setting out their recommendations and the proposed care plan. The care plan must set out the proposed timescale and process for any change in the young persons health care plan. Under no circumstance must the process / timescale be rushed and should taken into account sufficient time to enable the Children’s Services Authority and/or parents with parental responsibility to reflect on the recommendations and to communicate any relevant views to the hospital with the benefit, where necessary, of professional advice.

7.2 The Children’s Services Authority’s Role

Once the social worker practitioner is informed by the hospital staff that DNR / Withholding / Withdrawing Life Support is being considered, the following procedure is to be applied:

  1. The following people are to be notified immediately:
    • Head of the Community Services - Social Care lead;  
    • The identified legal advisor from Legal Services;
    • Chief Children and Families Officer of the Children and Families Service (to be notified by the Team Manager).
  2. Practitioners should ensure that written notification is obtained from the leading clinician and forward this to the relevant people identified above;
  3. Contact should be made with the parents and any other individuals who hold parental responsibility in order to ensure that are fully aware of the proposed decision of the hospital and in order to ascertain their initial view. It should be established whether there is a need for interpreting services, communicators or signers at the consultation meeting;
  4. Medical professionals may have previously discussed the recommendations, and social workers need to be clear about the nature of any meetings and to ensure all the relevant medical professionals will attend;
  5. Both the social work practitioner and team manager must attend the consultation meeting arranged by the hospital;
  6. Following the consultation meeting, it is the practitioner’s responsibility to update the identified legal adviser of the outcome of the meeting and any other subsequent meeting and arrange a Legal Planning Meeting as soon as possible thereafter, as necessary;
  7. If consent remains an issue of dispute following the Planning Meeting, the following persons are to be notified as necessary:
    • Director of Children’s Services (to be notified by the CTMD);
    • Cabinet Member for Children’s Services (to be notified by the Director or CTMD);
    • Chief Executive (to be notified by the Director or CTMD).
  8. Social workers should ensure that crosscheck's and case recordings are updated as soon as possible and accurately reflect any discussions held with parents, carers, children and the medical professionals.

7.3 Where Consent Is Not Required

This situation arises when the hospital are of the opinion that the child / young person should not be resuscitated or the treatment should focus towards palliative care and propose to rely upon clinical guidance, rather than parental consent, to justify the recommended action.

In circumstances such as these, the hospital is not seeking parental consent but is rather informing and consulting the appropriate people, as a matter of good practice.

If and when this situation does arise, the following procedure should be applied after the Planning Meeting:

  1. The team manager must forward the written report / recommendation of the treating / leading clinician to the Community Paediatrician for the Children’s Services Authority immediately after the meeting;
  2. The Community Paediatrician should consider the report and provide her recommendation as soon as possible in respect of the proposed treatment. This report is to be forwarded to the social worker and team manager. In matters of dispute the Community Paediatrician is advised to liaise with the leading clinician to resolve as many issues as possible and agree areas of disagreement.  In the interim the status quo is to remain;
  3. Once the practitioner and team manager are in receipt of the report from the Community Paediatrician they must forward this to the following persons:
    • Head of Community Services - Social Care lead; 
    • The identified legal adviser;
    • CTMD.
  4. In circumstances where the Community Paediatrician is in agreement with the leading / treating clinician, the Local Authority will concur with the view of both professionals;
  5. Where the Community Paediatrician and the hospital are in dispute, the CTMD is to provide written notification to the hospital;
  6. The Children’s Services Authority is to consult with its legal adviser in matters of dispute;
  7. If the local authority remains in disagreement with the hospital, then in accordance with the Official Solicitors’ Practice Note (2006) (22):
    • As a matter of good practice medical practitioners should seek a declaration from the court (particularly in relation to withdrawal or withholding of life sustaining treatment) where the legality of so doing is in doubt (23);
    • The court’s intervention is likely to be necessary in any case where there is serious disagreement between treating clinicians and others, or where there are doubts over the assessment of the child’s capacity to give consent or the evaluation of the child’s best interests.

In the interim, the hospital should confirm that no changes in the patient’s treatment plan will be made pending the decision of the court.

7.4 Where Consent Is Required

7.4.1 Disputes between the medical practitioners and the Children’s Services Authority

When withdrawal is an option that has been raised by the medical team and consent to carry out such treatment is required, section 7 and 8 of the protocol will apply.

In accordance with paragraph 76 of the GMC guidance, if the holder of parental responsibility is not willing to authorise treatment, the medical practitioner is bound by the refusal unless his responsible hospital trust obtains a ruling from the court.

In respect of children who are the subject of an interim or final care order, the hospital trust should only accept a decision whether to administer the withdrawal or withholding of life sustaining treatment or endorse a DNR status from a non statutory or statutory Chief Officer on behalf of the Children’s Services Authority, being:

  • The Chief Children and Families Officer of the Children and Families Service;
  • The Director of Children’s Services;
  • The Chief Executive.

7.4.2 Disputes between the CSA and a displaced parent /guardian

This situation arises when parental consent is required but the local authority and those with PR fail to achieve a consensus.

As indicated in section 3, if the child is subject to an interim/ full care order, the CSA has “ultimate responsibility” for any decisions made on behalf of the child. Once a decision has been made, this cannot be vetoed by a refusal from another person who holds parental responsibility.

Nevertheless, it is important to work in partnership with the parents and aim to achieve a consensus with them about the best course of action.

Once practitioners have complied with section 7.1 - 7.2 of this protocol, the following procedure should be applied;

  1. The team manager must forward the written report / recommendation of the treating / leading clinician to the Community Paediatrician for the London Borough of Redbridge;
  2. The Community Paediatrician to consider the report and provide her recommendation in respect of the proposed treatment. This report is to be forwarded to the social worker and team manager:
  3. Once the practitioner and team manager are in receipt of the report from the Community Paediatrician they must forward this to the following persons:
    • Head of Community Services - Social Care lead;
    • The identified legal advisor;
    • CTMD.

In matters where parental consent is sought and the child is under an interim or final care order, the hospital trust should only accept a decision whether to administer the withdrawal or withholding of life sustaining treatment or endorse a DNR status from:

A non statutory or statutory Chief Officer on behalf of the Children’s Services Authority, being:

  • The Chief Children and Families Officer of the Children and Families Service;
  • The Director of Children’s Services;
  • The Chief Executive.

The hospital must act in accordance with the written notification of the Children’s Services Authority.

In a matter of disagreement, it is a matter for the parents to make the relevant application to the High Court (24).

7.4.3 Dispute between the local authority and the parents in respect of a child subject to an Emergency Protection Order

If the child is subject to an EPO then the Children Services Authority does not have an overriding authority (25). In cases such as these legal advice should be obtained either to obtain an interim care order or an actual declaration from the court under section 100 of the Children Act 1989.  In this circumstance, the onus would be upon the local authority to make the application.

7.4.4 Dispute between the local authority and children aged 16 - 17 or “Gillick” competent

The wishes of a child, who has the capacity to decide whether to consent or refuse a proposed treatment should normally be respected, however if the Children Services Authority in its statutory care authority role disagrees with the child, you should seek legal advice immediately.


8. Flowchart

To Follow.


9. Section 20 / Abandoned Children

This protocol focuses upon children who are the subject of a care order. However social workers are increasingly finding themselves in situations where abandoned child/ren are admitted into hospital with life threatening conditions. This situation frequently happens when a child is born with multiple disabilities and is left in the hospital with staff. Therefore it seems sensible to address this issue in the protocol.

The Children’s Services Authority’s responsibility for abandoned children is limited to section 17 (26) and 20 (27) of the Children Act 1989 and therefore it does not acquire parental responsibility without obtaining a care order or emergency protection order. The Children Act has removed the local authority’s power to assume PR when a child has been in local authority accommodation by repealing the concept of “voluntary care” (previously under the CCA 1980). Therefore is if the hospital is considering the possibility of administering the withdrawal or withholding of life sustaining treatment or DNR, it is vital that the CSA use is best endeavours to contact the parents.

At the Planning Meeting, the treating clinician will confirm whether they require parental consent or not. In cases where parental consent is required but cannot be obtained, you should obtain legal advice to consider care proceeding.

If parental consent is not required, you should seek legal advice and consider either obtaining a care order or a declaration from the court.

In the interim, medical practitioner should continue to treat the child provided it is limited to that treatment which is reasonably required either to save the child’s life, or to prevent deterioration in the child’s health. 


10. Removal, Storage and Use of Human Organs

The issues of transplant and / or organ donation is addressed in the Human Tissue Act 2004. Under section 1 of the Act, it is lawful to store, use and remove human organs of a deceased person and use it for a purpose specified within the Act provided “appropriate consent” is obtained. The schedule of the Act is annexed to this protocol for ease of reference.

Under section 2 of the 2004 Act, “appropriate consent” under section 1 of the Act in relation to the body of a person who is a child or has died as a child is defined as:

  1. Where the child is alive, “appropriate consent” means the consent of the child (section 2 (2)); OR
  2. Where the child is alive, but does not have the capacity to consent (either by virtue of being a minor or otherwise) or fails to consider the issue, if s/he are competent, “appropriate consent” means the consent of a person who has parental responsibility for him (section 2 (3)).

If a child has died and the issue of organ removal arises, then section 7 of the 2004 Act will apply:

  1. “Appropriate consent” means the consent of the child, if it was in force immediately before he died (section 7 (a)); OR
  2. If no consent is in force, the consent of a person who had parental responsibility for him immediately before her died section 7 (b) (i)”.

Therefore, if the child is subject to a care order, the Children’s Services Authority must provide the consent on behalf of the child NOT the natural parents. Social work practitioners must ensure that the consent forms, if agreed are signed by a Chief Officer on behalf of the Children and Families Service, being one of:

  • The Chief Children and Families Officer;
  • The Director of Children’s Services;
  • The Chief Executive.


11. Procedures Following the Death of a Child Subject to a Care Order

It has been held that the effect of a care order (and thus parental responsibility held by a local authority) ceases on the death of a child (28), unless there are no identified parents or guardians. Nevertheless the social worker must complete the following before proceeding to close the relevant files:

  • Complete an OFSTED Serious Incident Form and send a copy to The Director of The Children and Families Service  Head of Commissioning Services and OFSTED;
  • Notify the Secretary of Sate and the Commission for Social Care Inspection (29)
  • Contact the Local Safeguarding Children’s Board;
  • Notify the corporate parenting team;
  • Notify the local PCT. (Redbridge if child was placed out of Borough);
  • Complete an Event Form;
  • Notify care agencies if support services have been in place;
  • Notify the Redbridge Business and Finance Manager; 
  • Must notify benefits agency when appropriate if a child is in receipt of benefits e.g. Disability Living Allowance;
  • Notify the Child Health Department;
  • Ensure that the date of death is recorded on computer system and case file.

Workers must obtain a copy of the Death Certificate.  It is usual for the parents to register the death.

Funeral Arrangements

The right to arrange the disposal of the remains of a child vests exclusively in the parents.

Funeral arrangements for a Looked After Child is dealt with in paragraph 20 of Schedule 2 to the Children Act 1989 as follows:-

  • The local authority may, with the consent (so far as it is reasonably practicable to obtain it) of every person who has parental responsibility for the child, arrange for the child’s body to be buried or cremated. In relation to a child who was under the age of 16 when her died, the local authority may recover from the parent of the child any expense incurred by them;
  • The local authority may make payments to any person who has parental responsibility for the child, or any relative, friend or other person connected with the child, in respect of travelling, subsistence or other expenses incurred by the person in attending the child’s funeral, subject to (a) it appears to the authority that the person concerned could not otherwise attend the child’s funeral without financial hardship and (b) the circumstances warrant the making of the payments.

Following the death of a child, the social worker should discuss the funeral arrangements with the parents/guardians and establish whether they wish to organise the funeral. Social worker should also establish whether the child has an estate.

If the parent is unwilling or unable to arrange the funeral and has no other financial means, and the child has no estate, the local authority can apply for funding to support the funeral arrangements.  The worker must ensure that they contact Paul McKenna (the Administrative Officer in CCAC Administration) for advice. Under no circumstances do workers arrange a funeral without seeking advice and guidance. 

If a child does have an estate this goes directly to the parent who can use this finance to pay for the child’s funeral as the family will not be eligible to apply for a death grant.

The allocated worker will remain in contact with the family until the funeral has taken place.

The allocated worker will ensure that appropriate counselling and support services are offered, to the family should they require post funeral support.

(1) This is only applicable in older children. Original definitions of brain death were not applied to neonates as the criteria were though to be affected by brain immaturity.

(2) In accordance with the “Guidelines for the determination of brain death if children” 1987.

(3) Page 12 of the RCPCH “Withholding or withdrawing life saving treatment in children”May 2004

(4) Airedale National Health Service Trust v Bland (1993) Re J (1991) Fam 33 AND Re c (1998) 384

(5) GMC Gudiance - August 2002

(6) Family Law Reform Act 1969

(7) Section 8 of the Family Law Reform Act 1969 as amended.

(8) Gillick v West Norfolk & Wisbech HA in 1986

(9) Re R (1991) 4 All ER 177, 185 Re W (1992) 4 All ER, 633

(10) General Medical Council “Withholding and withdrawing life-prolonging treatments: Good Practice in decision making”- August 2002 10  and Royal College of Paediatrics and Child Health “Withholding or Withdrawing Life Sustaining Treatment in Children: A Framework for Practice”May 2004

(11) Children Act 1989 section 1

(12) Children Act s 1 (3)(a)

(13) section 31 of the Children Act 1989

(14) Para 2.5 page 22

(15) Section 33 (5) states that nothing in subsection (3)(b) shall prevent a parent or guardian of the child who has care of him from doing what is reasonable in all the circumstances of the case for the purpose of safeguarding or promoting his welfare.

(16) Section 38 of the Children Act 1989

(17) The Children Act 1989 is silent on this point, however leading legal manual(s) clearly confirm this position, see Hershman Mc Farlane “Children Law and Practice” Manual 1 page C-216 para 1484-1499.

(18) (2006) EWHC 1007 (Fam)

(19) Section 44 of the Children Act 1989

(20) Children Act 1989 s 44 (4) (c)

(21) Children Act 1989 44 (4) (b)

(22) 2 FLR 373 - “Declaratory proceedings - medical welfare decisions for adults who lack capacity” Although this relates to adults there is no reason why it cannot apply to young children

(23) R Burke - v- GMC & Others (2005),

(24) page 22 of RCPCH guidance “Withholding or Withdrawing Life Sustaining Treatment in Children: a Framework for Practice 2nd Edition May 2004.

(25) See section 5.3 of this Protocol

(26) It shall be the responsibility of the local authority to safeguard and promote the welfare of the child within their area who is in need.

(27) The duty to provide accommodation.

(28) R v Gwynedd County Council ex parte B (1992) 3 All ER 317, (1991) 2FLR

(29) Children Act 1989, Schedule 2, para 20.

End