Childhood across all ethnic groups; moreover, some children

Childhood
cancer is the cancers that occur in children younger than 18 years. Although
cancer is uncommon in children, it is has been classified the leading cause of
death in children, despite the advances in the treatment of cancer. There are
no known causes of childhood cancer, and it occurs across all ethnic groups;
moreover, some children are even born with cancer. A diagnosis of childhood
cancer is a shock for family and child; it produces major emotional distress,
and affects children and family life balance. The known nature of cancer, being
as life-threatening disease, as well as risks associated with treatment, makes
decision making process stressful and difficult.  According to Whitney et al., 2006, clinical
decision making for children with serious illness such as cancer has a
significant challenge for physicians, parents, and patients, and it is
accompanied with ethical issues. Unlike treatment decision in adult patient, it
is internationally declared that children under the age of majority are legally
ineligible to make decisions about their own health care. While, parents or
guardians are authorized, to decide for treatment for minor patients, however,
medical decisions must be based on the child’s best interest, such treatment
effectiveness, possibilities of additional suffering from side effects, and
overall prognosis. Furthermore, healthcare professionals and related ethical
issues can affect also decision making in childhood cancer. Accordingly, this
paper aims to discuss number of key themes related to decision making in
pediatric oncology;  physician’s role in
decision making in childhood cancer; parents’ participation in treatment
decisions and the factors that might affect their decisions; parent’s view of
participation of child in clinical trials. Following this, I will look at
particular aspects with ethical dilemmas: refuse of treatment, do not
resuscitate (DNR) in children, and end-of-life care for children. Finally I
will offer own thoughts and hypothesis about topic.

Disclosure
of childhood cancer to family is a difficult procedure and requires physician
to deal with many stressors, including decision making in terms of treatment.
Historically physicians are ideally positioned to lead clinical decision making
process. Series of ethical challenges physicians are facing when making
treatment decisions. They are required to weigh the consequences of their
actions; by providing maximum benefit and avoiding harm, as well they are have
to support the role of parents, and consider child’s wishes (Friebert &
Kodish, 1999). According to Simons et al., 2006), physician’s role is to provide
information for patients and their families to enable them to take their own
decision rather than making decisions for them. On the other hand Whitney et
al., (2006) said, physicians should integrate ethical practice of medicine with
the realities of clinical medicine to ?nd the right treatment choice for
oncology child, and then recommend to child and family a particular clinical
decision, especially when there is one clear best medical option. Ethically, I
believe that physician has the decisional priority to indicate the most
effective treatment approach, based on knowledge and the best available
treatment, and then comes the role of the parents to exercise decisional and
legal authority.

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Legal
and ethical authority of parents over children’s medical care is a key part of
their parental role to enhance children’s health. Many literatures showed that,
decision making in childhood cancer is a critical issue to parents as they
required to face a strange situation and to make a decision that will affect
their child health and life span. According to Stewart, Pyke-Gerimm, &
Kelly 2012, it is a nature extension of the parental role to make the correct
decision for their child and ensure the best results. Moreover, they mentioned
that parents often show desire of more involvement in decisions about treatment
than what they actually experience however, few parents preferred physician to
take full responsibility for decision-making because of lack of their medical
experience. Decision making process can be highly ethical if it resulted of
collaboration between the active role of physicians as a result of their
knowledge and experience and parents authority by approving the recommend
choices by physicians (Stewart, Pyke-Gerimm, & Kelly 2012). Therefore, many
protocols and policies have been developed to provide parents with the
appropriate information and help their participation in decision making such as
informed consent. According to McKenna et al., 2009, parents should lead the
decision in treatment choices because they certainly will make the appropriate
decision, while this approach could make parents feel guilty if their decision
did not lead to a desired outcome. Subsequently, health care providers are
required to provide support and information to parents, to help them with the
possible difficulties that might occur during treatment process and enhance
their satisfaction with their decision. Despite parental decisions usually will
optimise the child’s well-being, but sometimes their choices harm the child.
Therefore, Parent’s authority to make medical decisions must not be unlimited
specially when they disagree with the recommended treatment by physician or
withdraw children from treatment, in order to maintain clinical ethics,
parents-physician shared decision making is preferable (McKenna et al., 2009).

Parental
treatment decision making for their child with cancer is a seriously
challenging situation. Different factors have been identified as affecting
parent’s decision making process. Clarity of provided information,
parents-physician quality of communication and the physician’s knowledge and
experience found to have a large impact on patent’s treatment decision. The
accuracy and adequacy of information provided to parents regarding child’s
condition and treatment had a positive relation with effectiveness of parent’s
decision making and decreases the anxiety related to their decision (Pyke-Grimm
et al., 2006). Moreover, better communication between parents and treating
physicians, high skills in providing information, and continuity in updating
parents with child’s progression also had a positive effect on parent’s
confidence in their decision and in physician as well (Pyke-Grimm et al.,
2006). Parents’ involvement in treatment decisions was directly affected by
their awareness of physician’s experience and level information, trusting that
physician with excellent knowledge, and long experience will offer the best treatment
options ((Pyke-Grimm et al., 2006). According to Miller & Nelson 2012,
gender, parents level of education, and previous experience of similar situation
have an influence on parent’s decision in childhood cancer. The parental
participation in decision making found to be lower among fathers than mothers, in
lower educated parents, and among those with lack of knowledge on child’s
disease and who had no similar experience.

Treatment
refusal for a child with cancer is a legal and ethical matter especially in
curable cancers. Since it is known, that parents’ are authorized to make the
medical decisions on behalf of their children, then they are also entitled to
refuse or discontinue child’s treatment. However, this authority must be
controlled if parent’s decision can cause harm to the child. According to Hord
et al., 2006, if treatments cure rate is high around 50%, refusing treatment by
parents legally and ethically unacceptable and then health care providers
required to involve legal authorities. Whilst, if the physician declared that
child’s prognosis is poor, then limiting medical interventions is acceptable,
and ethically defensible, because her the side effects of treatment may
outbalance the bene?ts, and parents has the right to consider child’s quality
of life.

 

Decision
making in clinical trials for childhood cancer includes different ethical
issues, such as informed consent, child assent, and factors affecting research
participation . Pediatric cancers therapies are progressing through scientific
researches. Of course involving child in researches and clinical trials have a
potential risks beside the desired benefits. This is an ethical dilemma
requires patient and/or parents, and physician to balance risks with the
benefits. Children based on their age should participate in discussion about
involving them in clinical trials, but often they lack the maturity and
intellectual capacity to make their own decision. A Therefore, it legally and
ethically parents responsibility to provide the informed consent to permit
enrolment of their child in research trial in accordance with child’s best
interest (Shilling & Young, 2009). 
On another study, Hoberman et al., 2013, said, although parent’s approval
is legally needed for trials, ethically children autonomy must be taken into
consideration, and researchers are required to involve them in decision making
as much as they are able and respect their decision. To parents decisional
process in clinical trials is a big challenge; some parent’s saw trial as a
hope for better treatment, while others look to trials as risk threatening
child life. Here researcher’s role comes to support parents and balance the
stress surrounds them, to allow them to hold a feel that they have maintained
child’s interest and secure the best results for them (Shilling & Young,
2009).

Separated
or divorced parents and someone else than a parent, like stepparent grandparent
are another complex ethical factors that can affect clinical decision making in
childhood cancer (McNary, A. 2014). If child’s parents are separated or
divorced, proper actions should be done to define which parent has the legal
authority to decide for treatment. Furthermore, if stepparent or grandparent
has been legally appointed for child’s care then health care providers should
discuss this with parents and if they acknowledged then agreement to be
documented (McNary, A. 2014). In separated or divorced parents it is preferred
when discussing cancer child’s treatment plan, to meet both parents even if
either parent has been authorized to consent for treatment. Regardless child is
living with whom; this will help to have a better treatment plan (McNary, A.
2014). Kelly & Ganong, 2006, in their study mentioned that, decision making
process for a child of single, divorced and re-partnered parents is more
difficult than that of married parents. It is a natural extension of parental
role to make the best treatment decision, thus biological parent should be
given the priority than step-parents for decision making (Kelly & Ganong,
2006). In addition they found that, in separated parents mothers had limited
fathers involvement however, mothers at first engaged fathers in the treatment
discussion. From another perspective Katherine & Lawrence, 2006, said that,
child’s sickness can create chance for parenting collaboration, which was not
always exist prior to the child’s diagnosis, on the other hand newly separated
parents had more difficulty interacting together than those parents who had
separated since long time.

Although
the parents are the authorized legally for decision making for their children,
children have the right to be involved in decisional process to the maximum
level according to child’s capacity. According to International Society of
Pediatric Oncology, Involving children in discussion about their own health and
treatment is an ethical obligation, contributes to improved outcome and
demonstrates value and respect to child’s opinion. It is ethically physician
role to assess child’s mental development and willingness to understand the
provided information during decision (Ruhe et al., 2016). On another study,
Ruhe et al., 2016, reported that children found participation in pediatric
oncology communication and decision making difficult and complex experience,
due to strange information provided, feeling of overlooked, and the pressure of
decision making. Despite these difficulties, children considered their
involvement in medical decision as important because they were the ones
affected by the disease (Ruhe et al., 2016). Further, children’s maturity and
cognitive abilities have an influence on their ability to recognize their
illness and the risks and benefits of medical treatment (Ruhe et al., 2016).

Together
with advancement in science and researches in the field of childhood cancer
treatments, studies showed that the rates of survivals from the different types
of childhood cancer have been also increased year by year. However, cancer
treatments recognized to have significant effects on reproductively.
Preservation of fertility is an ethical issue, should be considered in all
pediatric patients before treatment (Grundy, R., et al 2001). According to Mary
& Hutter 2008 study, fertility preservation has different ethical issues,
includes discussing the consequences of treatment on reproductively, options of
fertility preservation, the consent, and the difficulty of counselling child
who may not understand the situation and cannot make decision. Half of the
pediatric cancer patients and their families not counselled on the treatment
infertility consequences, because some oncologists still not realizing the
importance fertility preservation in children, assuming that patients cannot
afford the high cost of fertility-preservation procedures, or because of the
prognosis of the disease (Mary & Hutter 2008). Ethically, it is the responsibility
of the oncologist to age-appropriate child and parents about the possible
effects of cancer treatment on their fertility, moreover oncologists must offer
fertility preservation options such; oocytes, ovarian tissue, or disposition of
the sperm, oocytes, or ovarian tissue regardless of disease prognosis (Grundy,
R., et al 2001). Before collecting any biological specimen, it is ethically
required to involve child who shown moral development and maturity in this
discussion, even if parents agreed (Grundy, R., et al 2001).

            Despite of the high rates of
survivors from pediatric cancer patients, nevertheless, there are many still
dying daily because of progressive cancer. For those children with incurable
cancer, palliative care options must be discussed to optimize quality of life
and to preserve patient dignity and comfort (Maurer et al., 2010). Discussing
end of life in children with end stage cancer is complex and presents ethical
dilemmas. Hinds et al., 2005, showed that, children’s prefers to participate in
end of life care to identify their preference about their end of life.
Accordingly, 90% of terminally ill patients involved in end of life discussion
chosen to continue their treatment (Hinds et al., 2005). Surely, it is
difficult to discuss DNR order with a young child, then it legally parents role
to decide on behalf of their children with incurable cancer. Ethically,
physicians have to help parents when making DNR decision by helping them
carefully to balance the potential benefits and risks of the available options
and also to assure them that optimal care will continue even after DNR consent
(Maurer et al., 2010).        

Decision
making in paediatric cancer is often complex and have many ethical dilemmas
because it involves many stakeholders participate in the caring procedures and
treatment decisions. In addition it requires making a balance between the
benefits and risks among multiple treatment options (Bartholdson et al., 2014).
The physicians’ role is to provide evidence on best management protocols and
prognosis and side effects of each choice. Children who are younger than 18
years are incapable and ineligible to make their own medical decisions due to
lack of their experience and medical knowledge, nevertheless it is their right
to be involved in medical decision. Therefore, parents have the legal
legibility and authority to finalize medical decisions for their children
including treatment refusal, enrolling in research trials, end of life care,
and DNR. Of course parent’s decision will base on child’s best interest.

But what
if a young child refused or decided to discontinue treatment, due to the bad
side effects of treatment, while parents wanted to continue therapy. Definitely
efforts will be made by physicians to understand the refusal reasons and to
convince the child of the treatment. Does young child decision to refuse/stop
medical treatment should be taken in consideration, or they are still illegible
to make their own decision? I hypothesized that, young children are able to
make their own medical decisions, if they show an evidence of maturity,
knowledge, and confidence. Ethically, it is their right to demonstrate autonomy
so, their decisions have to be valued and considered. I recommended conducting
further research in order to provide, ethical protocols, and guidelines, with
respect to right of young children to make their own medical decision.

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