Recommendations
Chapter 12. Bereavement Adviser
1. Background
1.1 In the late 1980s and early 1990s cardiac social workers
provided a 24-hour on call service in the Alder Hey Cardiac Department
and would sit with bereaved parents and talk to them. Clinicians
would often take their lead from the cardiac social workers in terms
of when the parents were able to cope with being given the necessary
information following their child's death. The system worked very
well, and in the mid 1990s the cardiac social workers were replaced
by cardiac liaison nurses. The service now is equally as good as
the system it replaced.
1.2 There is always a cardiac liaison nurse available for
consultation at Alder Hey. There is also a community-based cardiac
liaison nurse supported by the British Heart Foundation who is available
to speak to parents at any time.
1.3 In their evidence the parents identified the need for
this type of service. It should not be restricted to the cardiac
department, but should be generally available. In his Interim Guidance
on Post Mortem Examination issued on 1 March 2000, the Chief Medical
Officer indicated that all NHS Hospital Trusts should designate
a named individual in a Trust who will be available to provide support
and information to families of the deceased where post mortem examination
may be required, whether this is requested by a hospital doctor
or the Coroner. This person should be trained in the management
of bereavement. We feel that a bereavement adviser would be the
person to discharge this role.
1.4 Parents must be involved in decision making as well as
in requesting and accepting support. The aim is to assist them in
the difficult period following death. Their individual feelings
and needs must be identified and respected. Their paramount need
is for accurate, consistent, co-ordinated information. Choices available
to parents should be fully explained, with all the necessary information
provided. They must be given time together and time with their child.
Time must also be available to make practical arrangements. They
must be treated with respect and dignity at all times.
1.5 The bereavement adviser should not be judgmental in dealing
with parents. Parents must be supplied with clear, factual, unbiased
information. Confusion must be avoided. Parents may need help with
thinking what they want to ask and even asking their clinician questions.
No subject should be avoided and they must be treated with honesty
even if the truth is painful. Their confidentiality must be respected
at all times. The bereavement adviser should try and ensure that
parents are dealt with on equal terms by the clinician and other
professionals and time must be made available to meet the parents'
needs.
1.6 It should be understood that grief can be expressed differently
in different cultures. The nature of grief is personal and private.
In a hospital, which often appears impersonal and public, there
should be a private place where the bereavement adviser and parents
can meet and have time together or alone. Parents must have time,
space and support to relive, think and talk about what has happened
to them.
1.7 The training of a bereavement adviser should include
the appropriate use of language, the need to provide individual
attention and to anticipate the requirements of bereaved relatives.
1.8 They must have a full understanding of post mortem procedures
and the issue of consent. This will include identifying and distinguishing
between a Coroner's and hospital post mortem examinations. They
should be able to obtain information from clinicians and pathologists
about the identification of organs to be retained and whether or
not they will be retained beyond the funeral. Training must include
why certain organs have to be ‘fixed’ before examination
and the length of time necessary to ‘fix’ and examine
a particular organ.
1.9 The bereavement adviser must be able to advise on all
aspects of the funeral including return of organs to the body following
post mortem examination, or identification of organs, tissue, blocks,
slides, X-rays and photographs retained beyond the funeral. An awareness
of all funeral procedures, religious requirements and the purpose
of memorial services is necessary.
1.10 There will be a psychological component in bereavement
advisers' training, relating to sensitive and respectful communication
as well as gentle treatment of stressful topics such as consent
to post mortem procedure. They will require liaison skills in order
to discuss matters with clinicians, Coroners and other professionals.
1.11 The bereavement adviser should try to involve the pathologist
more openly with clinicians and parents. The pathologist will be
of particular assistance with regard to explaining why organs are
retained and what purposes, including therapeutic, medical education
and research, are served by retention of organs or tissue.
1.12 Parents should be given every opportunity to express
their wishes about the eventual disposal of organs. A bereavement
adviser can facilitate this. Parents' wishes must be respected.
The need for respect cannot be overstated.
1.13 Every hospital should have a bereavement adviser. A
dedicated office should be provided and include a private sitting
area for parents or surviving relatives.
