Summary of a Literature Review and Practice
Implications for Health Professionals
Jan M Obery B.Sc. B.Soc.Admin. MSW.
© Jan M Obery 2011
Sole Parents with Terminal Illness
………………What Happens to the Children?
 Will
 Appointing a Guardian
 Statutory Declaration
 have all been utilised and can be used to
represent the parents wishes but do not
represent protection at law: i.e. can be
challenged in Family Court.
© Jan M Obery 2011
Sole Parents with Terminal Illness
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 Decided to conduct a Literature Review
 The search terms used included : sole parent, single parent,
dying father, dying mother, parent*death, death, dying, child
orphaned, orphaned child, child custody, child* , custody plan,
adolescence (where children only went up to 12 years of age),
parenting plan, guardianship legal, and orphans.
 Medline, Embase, Cinahl, TRIP, Google Scholar, Proust,
Academic ASAP, JStore, Web of Knowledge, Wiley Interscience
and the Proquest Central databases.
 only 4 articles which related to terminal illness in
general as it pertains to custody planning.
© Jan M Obery 2011
Sole Parents with Terminal Illness
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 Most articles related to HIV/Aids –decimation of
carers in the 1980’s prompted responses which
included the development of specialised
programmes to address the many issues including
legal issues and care of dependent children.
 The National Abandoned Infants Assistance
Resource developed Standby Guardianship
legislation as a response to the numbers of children
“abandoned” as a result of the death of their
(almost exclusively) mothers due to HIV/Aids
© Jan M Obery 2011
Sole Parents with Terminal Illness
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 Four main themes identified in the literature:
1. Lack of information both in regard to options
and in regard to diagnosis /prognosis.
2. Factors contributing to “denial” of impending
death.
3. Developing awareness of importance of
addressing legal concerns as an aspect of endof-life-care.
4. Impact on the children.
© Jan M Obery 2011
Sole Parents with Terminal Illness
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Barriers: 1. Information
 “The terminal illness of a parent presents the family
with an experience far outside the expectable norm for
the developmental stage of both child and family”
Dunning 2006 pg 500.
 Cagle and Kovacs 2009 argue that the role of the social
worker in providing education in end-of-life care is
under-recognised and undervalued. The provision of
concise, accurate information is essential in order to
support and empower patients in negotiating the health
care system.
© Jan M Obery 2011
Jan M Obery 2012
Sole Parents with Terminal Illness
………………What Happens to the Children?
Barriers: 1. Information
 The difficulty of prognostication Nadimi et al 2008
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note that:
Functional decline can occur rapidly.
People often don’t realize this.
Crucial for health professional to explain Dx; trxt
options & prognosis at every stage of the illness.
Onus on health professionals to have these
discussions in order to allow time for legal issues to
be dealt with.
© Jan M Obery 2011
Jan M Obery 2012
Sole Parents with Terminal Illness
………………What Happens to the Children?
Barriers: 1. Information
 Willis , Peck , Sells & Rodabaugh in a study of
Custody Planning: A Retrospective Review of
Oncology Patients Who Were Single Parents in
2001
 Retrospective study families had suggestions for
improvement focused need for more information
 Involving children more actively
 More written resources
 More counselling
 Requested frankness re: Prognosis.
© Jan M Obery 2011
Sole Parents with Terminal Illness
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 These information seeking behaviours are especially
poignant given that the findings of this research
indicated that:

‘Only five of the ten families developed custody
plans that were ultimately successful. One-half of the
families reported the patient had suffered with this
issue and almost one-half of the children were not
aware of the custody plans that had been arranged
for them.’
 In 40% of the cases, the children ultimately went
to people to whom the deceased parents were
opposed.’ Willis et al 2001 pg 380 (authors
emphasis)
© Jan M Obery 2011
Sole Parents with Terminal Illness
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 Barriers 2. Denial
 “For parents who face terminal illness and
eventual death, one of the most painful aspects
of their disease is the realization of their
inability to care for their children, plan their
futures, and see them grow to maturity. For
both patients and health care providers, there is
often a degree of wishful thinking about
custody options for the children involved.”
Willis et al 2001 pg 381.
© Jan M Obery 2011
Sole Parents with Terminal Illness
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 Barriers 2. Denial
 Over 40% of the mothers currently had no
custody arrangements for their children; most
simply figured female relatives would care for
their children should they no longer be able to.
Perhaps the hesitancy to make plans is related
to denial or avoidant coping among the
mothers.’
Simoni study of mothers with
HIV/Aids
Pg 50.
© Jan M Obery 2011
Jan M Obery 2012
Sole Parents with Terminal Illness
………………What Happens to the Children?
3.Legal Professionals –part of the TrXt team
 3 key articles :Fleishman et al report on
LegalHealth a programme set up to offer legal
services to cancer pts and families.
 Rodabaugh et al focus on health care funding
 Zevon et al focus on impact of legal services
support on pts perception of E-O-L care .
© Jan M Obery 2011
Sole Parents with Terminal Illness
………………What Happens to the Children?
3.Legal Professionals –part of the TrXt team
 The development of the Cancer Council’s Legal
and Financial service represents a significant
resource in this area.
 Still an area of difficulty for those with nonmalignant Dx.
 The development of a service collaboration with
Relationships Australia South Australia (RASA) .
© Jan M Obery 2011
Sole Parents with Terminal Illness
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 4. Impact on Children
 “The powerful losses and changes experienced
by a child during a family member’s disease
process define the real meaning of ‘anticipatory
grief’. It is not imagined post-death grief begun
early, rather it is loss in the child’s here and now
life and its accompanying grief”. Dunning 2006 pg 505. (Authors
emphasis)
© Jan M Obery 2011
Sole Parents with Terminal Illness
………………What Happens to the Children?
 “The combination of intervention directly with
the child and guidance for the parents about
how best to help their children offers the most
effective help............Providing accurate
information, in developmentally appropriate
language is one of the most helpful things a
clinician can offer. ” Dunning 2006 pg 511.
© Jan M Obery 2011
Sole Parents with Terminal Illness
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 Saldinger et al
present a contradictory
view to that expressed in most of the literature
admonishing practitioners to “attend to the
traumatic stress of ‘ordinary’ anticipated deaths
rather than maintaining an exclusive grief
orientation”.
 He describes the case study of a 14 year old
daughter forced to visit her father in hospital
even though her distress was so great that she
developed migraines and threw up before each
visit.
2003 pg 168
© Jan M Obery 2011
Sole Parents with Terminal Illness
………………What Happens to the Children?
Evidenced throughout the literature covered by this
review is an underlying respect for the patients and
families and a strong desire on the part of health care
and legal services practitioners to enhance the
experience of end-of-life care, of preserving the sense
of dignity and self-determination for patients. Clinical
experience suggests that, at a time when patients
often feel, correctly, that their lives, their life span
and their bodies are out of their control the ability to
negotiate a secure and appropriate custody plan for
their children should facilitate some peace of mind.
© Jan M Obery 2011
Sole Parents with Terminal Illness
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 Since 2011 RASA has developed a
collaborative approach to working with
organisations delivering End-of-life-care
services to mediate with the patient and
other potential carers.
 This involved modifying the Family Dispute
Resolution (FDR) model for this population
of families.
Jan M Obery 2012
Sole Parents with Terminal Illness
………………What Happens to the Children?
 Health professionals can also struggle with
seeking to support the dying patient in
obtaining the outcome that they want.
Mediation, as in the FDR may not get the dying
person exactly what they want but it does open
up the conversation and can help to clarify what
is really important in the dying parents mind in
regard to future “directions for care” of the
child/ren.
© Jan M Obery 2011
Sole Parents with Terminal Illness
………………What Happens to the Children?
 Key Factors of the RASA modified Family
Dispute Resolution service response
include:
 A responsive service, i.e. usually within 48
hours. This is in recognition of the volatile
nature of terminal illness, difficulty of
prognostication and the potential for
rapid deterioration. This service has been
free to date.
Jan M Obery 2012
Sole Parents with Terminal Illness
………………What Happens to the Children?
 Strong linkages and collaborations
with other professionals working with
the client, including legal advice and
health professionals. It is critical to
gain both a professional insight of the
urgency of the situation and the
clients understanding or acceptance of
their prognosis in the first instance.
Jan M Obery 2012
Sole Parents with Terminal Illness
………………What Happens to the Children?
 Clients wishes and fears for children are
established over the initial course of the
process.
 Most clients choose to exit the Family Dispute
Resolution (FDR) process and leave the
discussions to family members once they are
reassured that their voice will be represented in
the process.
 Clients then stay informed and consulted and
sometimes re-join the process at a later stage.
Jan M Obery 2012
Jan M Obery 2012
Sole Parents with Terminal Illness
………………What Happens to the Children?
 Whilst child focussed approach is
standard in FDR, child consultation is
more extensively offered and used in
this process than in standard FDR.
 This can only occur after permission is
sought from parent/s and child
consultant is clear about the level of
information that has been made
available to the child.
Jan M Obery 2012
Sole Parents with Terminal Illness
………………What Happens to the Children?
 Co-mediation model is essential as
cases are lengthy, heavy on case work,
need to be addressed urgently and
have usually involved substantial
family complexity and high levels of
social disadvantage.
Jan M Obery 2012
Sole Parents with Terminal Illness
………………What Happens to the Children?
 Forward directions for this service:
 Potential to develop a Statewide / national
resource for parents facing a life threatening
illness. Mediators intend to approach Family
law pathways network to propose working
group to do this.
 Need for a training model to be developed to
increase capacity for other mediators to work in
this sphere as there are minimal mediation
articles or training options.
Jan M Obery 2012
Sole Parents with Terminal Illness
………………What Happens to the Children?
Practice Implications:
• Engage the patient and family members and other potential
support persons in conversation as early as possible after the
referral .
• The importance of providing information to the patient;
relevant others and to the children with age appropriate
material.
• Focus on documenting the key values and beliefs the parent
holds in regard to parenting rather than on who should
provide the care.
© Jan M Obery 2011
Jan M Obery 2012