Medical neglect

Acting with urgency: responding to child neglect


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What is medical neglect? 

Medical neglect is the failure to seek medical care to prevent, investigate or treat illness. Definitions of medical neglect can also include dental neglect; and the failure to treat psychological illness. Medical neglect can cause serious harm, including chronic disability or even death.

Attributing responsibility for medical neglect can be problematic. When a medical procedure holds inherent danger or adverse effects, caregivers may be reluctant to pursue treatment. Parents and carers may disagree with medical advice and may choose to access alternative opinions. In such cases, a label of medical neglect can be problematic. Therefore, a diagnosis of medical neglect must satisfy several factors, including that: 

  • a child is harmed or is at risk of harm because of lack of health care; 
  • the recommended health care offers significant benefits to the child; 
  • the anticipated benefit of the treatment is significantly greater than its morbidity;
  • it can be demonstrated that access to health care is available and not used; and 
  • the caregiver understands the medical advice given.

Although reported rates of medical neglect are low, it often goes unrecognised. In the United States, medical neglect constitutes approximately 10% of all neglect deaths. This rises significantly to 22% of neglect deaths when a child is already known to child protection services. Children who experience medical neglect may have other needs neglected. 

Medical neglect can occur for a range of medical conditions. Some conditions that have been traditionally common as the primary medical diagnosis in cases of medical neglect include: 

  • Type 1 diabetes
  • Acute Medical issues
  • Organ transplantation
  • Bowel disease
  • Seizure disorder
  • Asthma
  • Nephrotic syndrome

Prematurity-related conditionsIn addition to this list, some conditions, such as childhood obesity which have not been common in the past are now emerging as problems. 


What are the reasons that medical neglect occurs? 

There are a number of reasons that parents and caregivers may neglect the medical needs of their children. Some are ideological, others practical. The reasons for medical neglect are unique to each child. Understanding the influence of factors contributing to a child having their medical needs neglected is an important part of assessing risk, evaluating parental capacity to change, and developing a targeted plan for intervention. The table below offers a summary of the main recognised reasons for medical neglect, at the patient, family and health professional levels. 

Level

Reason

Issues which can contribute to medical neglect

Patient

Child’s attitudes and behaviour

  • Children, particularly adolescents can refuse to receive medical care or adhere to treatment plans such as medications or diets. In such instances, caregivers and medical staff must work together to persuade the child or ultimately overrule their decision.

Family

Poverty and economic hardship

  • Managing chronic health conditions can require time and financial resources. Caregivers may need to decrease their employment and some may risk losing their job. 
  • Families may not have enough money to get to appointments or pay for prescribed treatment or medications. 

Impairment of caregivers

  • If a caregiver is depressed, mentally ill or developmentally delayed, they may not have the capacity to respond to the medical needs of their child. 
  • Parents with substance abuse problems may have less energy, time and resources to respond to their child’s needs. 
 

Lack of awareness, skills and knowledge

  • Caregivers are not always aware of the signs or symptoms which indicate a serious illness.
  • Caregivers may have a low level of medical literacy. They may not understand why treatment or medication has been prescribed. As a result, they may not understand the importance of the treatment plan and may not follow through on its management.
  • Children of chronic conditions may be subject to particularly complex treatment regimes involving a range of medical specialists. It can be challenging for caregivers to understand and adhere to these complex regimes.
  • Caregivers may have language barriers which impact their level of understanding about the severity of the medical concern.

Family chaos and disorganisation

  • A chaotic home life may make it particularly difficult for parents to respond effectively to medical emergencies or to meet the needs of chronic illness that require ongoing, regular appointments, treatment and medication. 

Lack of trust in health care professionals

  • Parents may not trust medical advice if it contradicts views held by trusted family or community members, or that they have seen in the media. 

Lack of access to care

  • Parents may fail to access medical care because of challenges of geographical distance, lack of transport or lack of alternative care arrangements for other children.

Cultural and religious beliefs

  • Caregivers’ belief systems may be inconsistent with Western medical views and caregivers may preference alternative medicine approaches. 
  • Opposition to medical treatment may be religiously motivated.  

Medical practitioner

Misunderstanding of different cultural values

  • Medical staff may not understand fully why caregivers are refusing treatment plans. 
  • Medical practitioners may need to develop cultural understanding to ensure that they can communicate with the caregivers in way which encourages compliance.   

Communication problems

  • Medical staff must ensure that caregivers understand the reason that medical treatment is required as well as how to adhere to treatment plans. 
  • Caregivers may have low levels of English language skills and of health literacy. Medical staff may need to provide extra time and support to help these caregivers to understand the medical problem and treatment.  

Assessing risk of harm from medical neglect

All forms of medical neglect are not equally harmful. There is often no clear threshold which automatically predicts that a child will be at risk of serious and imminent harm. The diagnosis of medical neglect is unique for each child and each medical condition. An assessment of medical neglect relies upon medical knowledge of the conditions and any other known medical conditions a child may be suffering from. Assessing the risk and impact of medical neglect to a child or young person is therefore best led by technical medical and health staff, which has been informed by consultation with a range of parties (the child, parents, school and FACS). 

Decisions about interventions with children who are having their medical needs neglected should consider three factors. 

  • Is the likelihood that serious imminent harm will occur high? 
  • Is there a reasonable likelihood that the proposed intervention will result in effective treatment? 
  • Are the any other alternative options for addressing the problem?  

To answer these questions, child protection practitioners need input from medical staff to understand the nature of the medical condition, the imminence and severity of risk a child faces, and the proposed treatment/intervention. Casework in cases of medical neglect must therefore be multidisciplinary and collaborative. Practitioners must take reasonable steps to share information and coordinate decision-making processes with staff from all other involved agencies.


Consent to medical treatment

The consent required to undertake a medical examination or provide medical treatment is dependent upon the child’s age, the seriousness of the treatment being considered and their personal level of maturity. The NSW Health policy outlines the protocols for obtaining consent for the treatment of minors under the age of 18. These guidelines are summarised below in Table 2.

Table 2: Medical treatment consent guidelines

Child age

Non-emergency 

Emergency

Birth – 13 years

The consent of the parent or guardian is necessary.

“A medical practitioner may carry out medical treatment on a child (a person aged under 16 years) or young person (a person aged 16 or 17) without the consent of the child or young person or a

parent of the child or young person, if the medical practitioner is of the opinion that it is necessary, as a matter of urgency, to carry out the treatment on the child or young person in order to save his or her life or to prevent serious damage to his or her health. This means that

emergency medical treatment, and emergency first aid treatment (including any procedure,

operation or examination) may be provided without the consent of the minor or a parent or guardian”.

14 – 15 years

A child aged 14 years and above may consent to their own treatment provided they adequately

understand and appreciate the nature and consequences of the operation procedure or

treatment. 

Where a child is 14 or 15 years of age, it is prudent for practitioners or hospitals to also obtain the consent of the parent or guardian, unless the patient objects.

16 years & over

Their own consent is sufficient.

NSW Ministry of Health (2005)

Where a child is over the age of 14, the health practitioner must decide on a case by case basis whether the young person has sufficient understanding and intelligence to enable them to fully understand what is proposed. Although adolescents are legally able to consent to their own treatment, there are often unrealistic expectations placed on young people to manage their own complex and multiple health needs. Therefore, in making this assessment, practitioners must consider whether an adolescent is appropriately supported to make decisions and manage their own health needs. 

Caregivers should always be encouraged to listen to their child’s opinion. This is particularly relevant when a child demonstrates the maturity to understand their proposed medical treatment but their opinion differs to that of their parents. 


Implications for Practice 

Understanding & assessing the medical problem

Assessments must ensure that you gain a full understanding of the nature of the medical condition, including the cause of the condition and its impact on the child, as well as a clear understanding of the proposed treatment / management plan. Medical neglect can co-occur with other forms or maltreatment and abuse. Assessments must therefore be holistic and incorporate wider concerns about the child’s welfare. 

Key considerations

  • What is the level and imminence of harm facing the child/young person as a result of the medical condition, as well as from any related conditions? 
  • What are the risks to the child in the immediate, medium and longer term? 
  • Are the potential harms facing the child reversible?
  • What advice has been provided to the family regarding the child’s treatment? Has the advice from all health professionals been consistent? 
  • Does the child or young person understand the nature of the medical condition and the proposed treatment. Have they been consulted about whether they are happy to receive treatment? 
  • What are the health professionals’ concerns about the health and wellbeing of the child or young person? How are these concerns related to the response of the child’s caregivers? 
  • Do you have any other concerns for the child’s welfare and is there any evidence of other forms of abuse or maltreatment present?
  • Do you understand the nature of the medical condition and neglect? Is it patterned or episodic? 

Understanding patient and caregiver responses to the problem 

You need to understand the reasons why caregivers are neglecting the medical needs of their children. As with all child maltreatment issues, assessment must be systemic, including factors within the child as well as consideration of family and environmental factors. 

Key considerations

  • Do the caregivers understand the harm that has been caused or is likely to occur as a result of the medical neglect? Do they understand how the medical neglect may have compounded the original risk of harm from the medical condition? 
  • Do caregivers understand the problem and the proposed treatment options, including the importance of adhering to the treatment plan? Has the medical terminology been clearly explained in plain language? Have the caregivers been given an opportunity to ask questions or raise concerns about the management plan? 
  • If caregivers are not adhering to the treatment plan, do you understand the reasons why? Are the barriers cultural or ideological, or are there other issues (financial, resource or geographical) impacting upon the caregiver's capacity?
  • Have caregivers been respectfully challenged about their behaviour when medical and treatment plans are not followed? 
  • To what extent do the caregivers demonstrate willingness and capacity to change? 
  • Are the caregiver and adolescent in agreement about accessing medical treatment? In the case of adolescents, have they consented to the medical treatment?
  • Have you tried to talk to the child or young person directly about the medical treatment? 

Improving treatment and management outcomes for children 

Your work with children and caregivers must remain focused on improving outcomes for children. Case plans need to clearly articulate expectations for parenting behaviour, including specific objectives which will result in improved outcomes for the child’s health. If caregivers feel listened to, they are more like to adhere to the treatment plans. Case plans need to be developed in collaboration with families. 

Key considerations

  • Has the family been engaged in the decision making process? 
  • Has the child’s treatment/intervention plan been developed in collaboration with the caregivers? To what extent do the caregivers understand, agree and are engaged with the plan? Are the objectives of the plan clearly related to improved outcomes for the child?
  • How can I better support the needs of the family to better meet the health and medical needs of the child? This may be particularly relevant for children with chronic health conditions that require ongoing and complex treatment and medication. 
  • Have I helped the caregivers to develop better family and community support networks that can help to meet the medical needs of their children. 
  • How is the change being monitored? Has the health of the child improved since the implementation of the treatment/intervention plan? 

Collaborating with other agencies

In recognition that medical neglect may co-occur with other concerns about the child’s welfare, it is vital that you collaborate meaningfully with other agencies with an interest in the child’s welfare. Wherever possible, work collaboratively with health staff to triangulate information. Assessments should be informed by technical medical opinions as well as informed by reports of the child’s welfare from other key agencies such as the Department of Education. 

Key considerations: 

  • Do I have a holistic perspective on the needs of the children and caregivers? 
  • Do the child/parents have other issues, which need to be integrated into assessments and case-plans?  
  • Have I sought and received Information from other agencies working with the child and family? 
  • Have I asked the child and family about following through with and outcomes of any previous referrals made by any other agency or unit within an agency?
  • In thinking about medical neglect, have I done a thorough assessment of the family – are there concerns about other forms of maltreatment? 
  • Following our initial assessment and consultation, have I followed up the caregivers to see if there has been any changes in medical treatment? 
  • Families can find the network of medical provider complex and may need some assistance to advocate for their needs. Have I offered support to the child and caregiver to help them negotiate the health system. 
  • Have I triangulated information and asked about whether a child and family has followed through with referrals? 
  • Have I considered if there is a cultural element to the medical neglect? If this is a possibility, has a cultural consult been sought?

References 

Dubowitz, H. (2002) Neglect of children’s health care. In: Myers JEB, Berliner L, Briere J, Jenny C, Hendrix CT, Reid T, (eds). The APSAC Handbook on Child Maltreatment. Thousand Oaks, CA: Sage; pp269-292

Jenny, C. (2007) Recognizing and Responding to Medical Neglect. Pediatrics. 120, pp.1385-1389. 

NSW Department of Family & Community Services (2015) Child Deaths 2015 Annual Report. Learning to improve services. FACS, Sydney.

NSW Ministry of Health (2005) Policy Directive. Consent to Medical Treatment - Patient Information. Document Number PD2005_406. Publication date 27-Jan-2005. Accessed online. http://www1.health.nsw.gov.au/pds/ActivePDSDocuments/PD2005_406.pdf

Varness, T., Allen, D.B., Carrel, A.L. & Fost, N. (2009) Childhood Obesity and Medical Neglect. Pediatrics. 123, pp.399-406.