When parental decisions and medical

recommendations conflict:
a multidisciplinary approach to medical
nonadherence
Current Issues in Child Maltreatment
November 25th, 2013

David Lubert, MSW & Michelle Shouldice, MD

Corry Azzopardi , MSW, PhD (c) & Mark Wade, MSc, MA, PhD (c)
Learning Objectives:

At the end of this session, participants will be able to:

1. Apply a step-wise approach to identification, assessment, and management of

situations of medical non-adherence in health care settings

2. Identify when to consider reporting medical non-adherence concerns to child welfare

3. Effectively communicate concerns of medical non-adherence to child welfare in a

manner that promotes:
positive health and psychosocial outcomes for children
collaboration between families, health care providers and child welfare
Outline

1. Definitions/examples
2. Principles of intervention
3. Stepwise approach
a. Identification
b. Evaluation
c. Assessment
d. Intervention
4. Presentation of unpublished data from a current study on
medical non-adherence
Think Take a moment to consider a scenario you have
encountered (or might encounter) of
non-adherence to health care recommendations
involving a child

Pair Turn to your neighbour and talk about it

Share Briefly present the scenario to the group

Example:
Six-year-old hospitalized with severe asthma who has not
been receiving the recommended treatment with inhaled
medications
What are we talking about?
Adherence

Treatment adherence is the extent to which a patients

behavior is consistent with the health care plan
(Smith & Shuchman, 2005)

Avoids blame (Dubowitz, 2013)

Less paternalistic than compliance, which suggests obedience to

medical advice handed down from on high (Davie, 2013)

Plan regarded as a process of shared decision-making between

the patient, family and health care provider (Morrisey et al, 2007)
 Non-adherence is a very common problem!

Overall rates of non-adherence range

from 30-60% of patients

Adherence is not an all-or-nothing phenomenon: patients may

adhere to treatment plans

only some of the time

to certain aspects of management better than others
sporadically
for a variety of reasons
less likely when symptoms are not apparent and
quantifiable for the patient and/or family
Medical nonadherence

1. Not following through with agreed-upon

health care plan

2. Not consenting to health care

recommendations
 Consent to treatment/refusal of consent:
Health Care Consent Act of Ontario
(Health care Consent Act, 1996, R.S.O. , c.2, schedule 6.)

Health care providers must assess childrens capacity to refuse treatment

No age for consent

Must be assessed for each treatment decision

Understanding of risks and benefits of recommended treatment and

alternate treatment options
If child incapable of consenting to treatment, consent to be obtained
from an appropriate substitute decision-maker
Child deemed incapable should be included in decision-making and
informed of decisions to the extent they can understand at an age
appropriate level
PRINCIPLES OF INTERVENTION
Guiding Principles

1. Best interests of the child

2. Respect for parent/family values and beliefs

3. Recognition of personal bias

 Primary Concern: Best Interests of The Child

Involve children and adolescents in decision-making to an

increasing degree, based on their capacity, according to their
level of maturity and development

Children and adolescents should become the principal decision

maker for themselves when they demonstrate sufficient decision-
making capacity

Consider influence of relationship dynamics between parent and

child and how this may influence on childs treatment decision
 Adolescence and Best Interests
Problems with adherence increase markedly during this period as
development plays out in the context of illness

Consider how proposed treatment may affect appearance, and intrude on their
daily lives

Teenagers may place greater emphasis on the present than the long-term
consequences, especially those with chronic illness who are often asymptomatic
for long periods, resulting in less motivation to adhere to treatment

Needs for control, autonomy and independence, challenges to authority, emotional

difficulties, poor coping ability, experimentation and risk-taking behavior influence
adherence

(Morrisey et al, 2007; Smith & Shuchman, 2005; Will, 2004)

 Respect for Parent and Family Values and Beliefs

The overwhelming majority of parents in these situations care deeply about their
children and believe they are acting in the best interests of their child
Varness et al, 2009

Begin with the assumption that parents are best suited to make decisions for their
child

Assume parents are acting in their childs best interest unless evidence clearly
indicates they are motivated by self-interest and/or there are concerns of neglect

Parents may place greater weight on the risks, side effects, discomforts, and
disruptions their child may endure. For some parents, the benefits of treatment
and an increased chance of survival may not justify the burden of treatment
 Recognition of Personal Bias

Not necessarily irrational for patients, parents and families to

think differently about the best course of treatment

Conflicts and dilemmas may arise when health care providers try
to honour family values and beliefs that conflict with professional
obligations

Health care providers comfort and willingness to work with

patients, caregivers and families that struggle with adherence
GROUP EXERCISE
Case Examples
1. Six-year-old girl with significant
eczema and new skin infection,
parents are refusing topical
corticosteroids
2. 18-month-old with cleft palate,
mother refusing surgical repair
3. Two-year-old with seizure
syndrome admitted with status
epilepticus, medication levels
low
4. 14-year-old with diabetes,
HbA1C is persistently above 8
5. Two-year-old and six-year-old siblings
with autism, not getting recommended
speech and language and behavioural
interventions
6. Eight-year-old girl with a newly
diagnosed brain tumour and
increased intracranial pressure; father
refusing surgical excision
7. Five-year-old with HIV, high viral load
despite multiple medication
adjustments, pharmacy confirms
medications have not been picked up
Select one of the case examples or choose your own scenario

What steps would you take to resolve the issues and achieve
Positive health and psychosocial outcomes for child and family
Collaborative approach to management which includes the child
and family
Best possible ongoing relationship between healthcare providers
and child/family
Factors that may contribute to non-adherence
Influences within the family social
network and other health providers
on the patient, the parents and
familys perception of treatment and
illness
Difficulty accepting the seriousness
and implications of the diagnosis
Fear of possible complications and
side effects of treatment
Concerns regarding the efficacy of
recommended treatment
Lack of confidence in the care
provider
Complexity of the treatment regimen
Challenges in coping with an ill child;
organizing and meeting all aspects of
medical treatment can be
overwhelming
Competing demands in the family
Values and beliefs that may include
rejection of Western Medicine,
preference for alternative therapies,
cultural, religious and spiritual
practices
(Davie, 2013; Morrisey et al,2007;
Smith & Shuchman, 2005)
STEPWISE APPROACH TO
MEDICAL NEGLECT
 Identification

Evaluation

Assessment

Management
Adapted from Keeshin & Dubowitz (2013)
 Identification
Assessment
Crossing the line
When non-adherence
becomes medical
neglect
 Why bring neglect into it?

To protect children and improve

their well-being,
not to blame parents

H. Dubowitz, 1999
 For the child, not receiving necessary care is neglect
regardless why such care is not provided

Allows for consideration a full array of possible contributory

factors beyond the responsibility of parents

(Dubowitz, 2011)

Aligned with health care model:

more constructive, less stigmatizing, and supports efforts to
help families access services for their children

(Berkowitz, 2009)
Harm Threshold:
Justified State Interference with Parental Decision to Refuse a Medical
Intervention: Diekema, 2004
1. Refusal places the child at substantial risk of serious harm
2. Harm imminent and requires immediate action to prevent it
3. The intervention is necessary to prevent harm
4. The intervention is of known efficacy and is likely to prevent harm
5. The intervention itself does not place child at significant risk of
serious harm and benefits outweigh risks substantially more than
option chosen by parents
6. No other option that would prevent serious harm and is more
acceptable to parents
7. State intervention can be generalized to all other similar situations
8. Most parents would agree that state intervention was reasonable

Parental decisions that do not significantly increase the likelihood of

serious harm as compared to other options should be tolerated
Medical Neglect - Legal Definition

Child and Family Services Act of Ontario

Section 37(2)(e) - the child requires medical treatment to

cure, prevent or alleviate physical harm or suffering and
the childs parent or the person having charge of the
child does not provide, or refuses or is unavailable or
unable to consent to, the treatment.

Child and Family Services Act, R.S.O. 1990, c. C11.

Medical Neglect Child Welfare Definition
Ontario Child Welfare Eligibility Spectrum
Section 2 Scale 3: Caregiver response to childs physical health

A caregiver either deliberately does not provide or refuses to

provide or is unavailable/unable to provide consent to required
medical treatment to cure, prevent, or alleviate the childs physical
injury, illness, disability, suffering or dental problem

An inadequate caregiver response would also include those

caregivers who consent to the treatment but who do not follow
through and take the actions necessary to provide the treatment

Ontario Association of Childrens Aid Societies (OACAS). (2006). Ontario Child Welfare Eligibility
Spectrum . Retrieved from http://www.oacas.org/pubs/oacas/eligibility/index.htm.
Evaluation
Non-adherence to neglect:
- evaluating the scenario
1. Who is the decision-maker?
Child and/or substitute decision-maker
Consider whether the right parties have been involved in the discussions
Consider capacity of the decision-maker
2. What is the issue?
Non-adherence to agreed plan vs refusal of treatment/part of treatment plan
3. What is the impact on the child of not following recommendations?
- determine urgency/severity
Symptoms of child with/without treatment
Prognosis of child with/without treatment
Short term, long term
Physiologic, functional, emotional/psychological
4. Have all aspects of recommended intervention been considered?
Effectiveness
Side effects short term, long term
Evidence-base and universal acceptance
Alternatives and their impact
Non-adherence to neglect:
- evaluating the scenario
5. Reflect on effectiveness of the engagement and communication
between family and health care professionals / system
Familys understanding of diagnosis, prognosis, efficacy and
risks/benefits of the proposed treatment plan
Conflicting messages family may have received about treatment
risks/benefits
Opportunity for a second opinion
Familys sources of health care information:
Alternative health care providers
Family members/friends/other health care professionals
Own sources of research
Assess level of understanding
French study of understanding of relatives of ICU
patients indicated 54% did not understand diagnosis,
prognosis, or treatment (although dont conclude that
disagreement is based on misunderstanding)

Ask open-ended questions

Solicit patient and family concerns
Assess the familys own explanatory model
 Exploring
the problem
Why would caregivers refuse or be unable to consent
to or provide medical treatment for their children?

Need to explore and understand:

Parents perception of child's problem,
Parents interpretation of child's problem
Parents response to the problem (delays)
Parents implementation of the response
(Criitenden, 1993)
 Special needs of children with
complex health problems and/or
disabilities may overwhelm even caring
and competent parents

(Dubowitz, 1999)
 Clashing
Value Systems
The impact of culture the lens through which we
see the world
People differ in what values are worth pursuing,
how their values are ranked, and how to best
pursue their values
Concepts like quality of life, benefit, and harm
have very different meanings for different people
(J. Breslin, April 2005)
Assessment
General Principles for Assessment of Possible Neglect (Dubowitz, 2013)

View adherence issues as a symptom

attempt to understand what lies beneath each

individual case
(Davies, 2013; Keeshin & Dubowitz, 2013)
Potential reasons why parents might refuse treatment

anxiety and emotional turmoil at the time of diagnosis

ambiguous consenting procedures
fears concerning advanced technology
fears about social attitudes towards functional and cognitive
limitations as a result of aggressive medical treatment
financial costs related to the care for the ill child
sacrifice of family life when a child has great health-related
demands
religious or cultural frameworks that advocate limitation of
treatments that are not in alignment with their belief systems,
traditions, or practices or the preference for prayer to address
illness.
Linnard-Palmer& Kools (2004)

(
General Principles for Assessment of Possible Neglect (Dubowitz, 2013)

Developmental-Ecological Theory of Neglect

Posits there are multiple and interacting

contributing to neglect rather than a single cause

Strengths-based
General Principles for Assessment of Possible Neglect (Dubowitz, 2013)
Community
Child Parents Family Society
Professionals

Strengths Strengths Strengths Strengths Strengths

older caring adequate adequate values child and
development & child-focused resources resources family
cognitive ability intelligent Good support good support adequate funding
mature parenting system system for services
knowledge & Involvement of involvement of parental leave
Limitations skills both parents both parents and other income
disability organized Safe supports
difficult coping Limitations neighborhood
temperament Resourceful parents
complex needs Sound decision - distracted by Limitations Limitations
denial of making skills other family disadvantaged poverty
condition problems & neighborhood inadequate
refuses to Limitations stress crime & violence funding, supports
adhere mental health children with poor and services
concerns competing needs communication lack of multi-
cognitive chaotic / with health cultural
impairment disorganized providers resources
substance abuse pattern of abuse, limited access
physical illness, neglect and lack of
disability language & required services
cultural barriers lack of
beliefs interdisciplinary
antithetical to approach
Western Cultural barriers
Medicine
(Dubowitz, 2002)
Additional factors to consider

Is there a pattern of inability to meet childrens basic

needs?

Hygiene, nutrition, school attendance, home environment

Domestic violence
Social Isolation
Prior child welfare involvement
Parental history of abuse or neglect as children
Management
 Prevention
Intervention in the health care
setting
Child Welfare involvement
PREVENTION
Good communication
mitigates conflict
Communication Strategies
Meet as often as necessary
Frequent education sessions and meetings give
families time to prepare, and time to absorb
information before they have to make a decision
Prepare thoroughly ahead of time prioritize the main
take home message
Ensure the family decision-making is well supported
Invite the right people, including supports
Hold meetings in private, quiet place whenever possible
Make sure enough time is allowed
Improve accessibility of health information (e.g. plain
language, clear written instructions, repetition)
Listen
Clinicians interrupt patients on average
18 seconds after patients begin to describe their
concerns
When delivering information, pause frequently to check for
understanding and absorption

When families focus on what has gone wrong in the past

this is a sign of distrust help them focus on what is
happening now
Davies (2013) suggests a Listen, Explain, Adjust and Discuss model of intervention
that make use of motivational interviewing techniques, active listening and other
counseling approaches to help guide health care providers in discussion of adherence
with patients and their parents.
Stay attuned to emotions
Recognize and respond to emotions (patients, familys
and your own)

Recognize that a range of factors influence expression

of emotions

Recognize that sometimes decisions are controlled by

emotion not logic
Realistic plans

Set clear, simple goals, attainable goals

Identify barriers early, remedy problems
Set plans out in writing use to monitor progress
Overcome language/communication/literacy barriers
Helping overcome barriers
Assisting the family in identifying hidden sources of
support, strength and resources

Accessing multi-disciplinary support. Refer to

relevant chronic illness support groups

Creative solutions to poverty-related issues (e.g.

transportation, scheduling)

Speaking with other families whose child has same

condition

Involve other institutional and/or community

supports
INTERVENTION
Intervention:
Intervention guided by:
Likelihood and severity of harm
Urgency of treatment
Capacity of decision-maker
Understanding of contributing factors
Results of attempts to reduce barriers to adherence
Other concerns of maltreatment/inability to provide for
basic needs of child
Options for Intervention:
Document recommendations in writing in a way the family can understand
Provide letter for family
Consider treatment alternatives
Review literature
Consult peers/experts
Compromise less intrusive option
Offer second opinion
Consult /involve others
Bioethics
Social Work
Community/family members
Child maltreatment consultants
Institutional mediator (ombudsman, child and family relations)
Child Welfare
Consider compromise
Start where the patient and family is
Simplify treatment plans
When available, begin with least intrusive and less
restrictive alternatives
Not adding or increasing interventions, but not
withdrawing, utilizing treatment alternative
Negotiate a time limited trial of therapy
Facilitate a second opinion
In many cases it is more appropriate for the physician
to compromise than the family
Intervention in the health care setting
Moral dilemma vs reportable concern?
Caregivers and medical professionals may not agree on what is in a
childs best interests

Professionals may need to tolerate decisions made by caregivers if

those decisions are not likely to be harmful to the child

If likelihood of harm is not significant, the role of the health care

provider is to:
provide information
correct misperceptions/misinformation
Involvement of Child Welfare
Concern of harm, attempts to intervene unsuccessful,
reached limits of role and ability to proceed

Assessment of aspects of risk to child which are not

accessible in the health care setting, respecting boundaries
of role and privacy of child/family

Determination of State intervention in decision-making

Barriers to Collaboration
Between Health Care and Child Welfare
Health Care Perspective
reporting will not help the child
previous negative experiences
no meaningful feedback about
Child Welfare Perspective
outcome
damaged relationship with the health care providers want to control
family, withdrawal from care decision-making,
will remove children from the dictate/micromanage the child welfare
care of their families response, misunderstand
confidentiality requirements
time consuming
lack of resources, huge workloads,
need to testify in court legal constraints and requirements
dont know how to report for rapid decisions inhibits
(Jones et al., 2008; Flaherty et al, 2008) collaboration.
(Goad, 2008)
Strategies to Improve Collaboration

Health care and child welfare needs to collaborate in ways that

maximize the potential outcomes for the child and family through
communication and coordinating interventions that combine the
expertise of all the systems and professionals involved.
(Goad, 2008)

Clarification and respect for roles in responding to an

abuse/neglect report
Education regarding confidentiality and respective professional,
legal and agency mandates
Understanding child welfare procedures and the limits of child
welfare
Opportunities for cross-training and partnership
Child Welfare involvement - Reporting
Review documentation
Thoroughly assess the immediacy and severity of the risk associated with
lack of treatment, delay in treatment, or alternative treatments, and the net
benefit of treatment
Prepare your report:
Avoid the use of medical jargon
Organize and summarize main issues
Describe the patient's disease process, medical findings,
recommended treatment plan, and health risks and benefits of
treatment
Explain patients progress and level of adherence to the
recommended plan
Report on what accommodations and efforts have been made to
address barriers to adherence
State imminent or future risk to the patient without recommended
treatment
Child Welfare Involvement Intervention

Investigation
Mediation
Voluntary Service
Seeking a Family Court Order
Apprehension
Convening an emergency court hearing
Summary
A comprehensive assessment and process of
intervention are frequently required when treatment
nonadherance concerns arise

Responding with skilled communication, negotiation,

and compassion is often successful in resolving
disagreement
Summary - Continued

When disagreements cannot be resolved and the

child is not receiving treatment to prevent or alleviate
harm or suffering, involvement of Child Welfare is
indicated

Interventions are based on assessment of

contributing factors and risk
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