Factors Influencing Decision-making in Parents of Children with Life-threatening Illnesses Transitioning to Palliative Care
M.B. Da Silva
Palliative care is a comfort-focused approach to life-limiting or life-threatening illnesses, whose main goal is to maximize quality of life. Assisting patients and their families in complex decision-making is one of the foundations of palliative care; however, in children this process is more complex and clinicians should therefore aim to understand and clarify the concepts and techniques of shared decision-making, decision support, and informed patient choices in order to ensure that the perspectives and wishes of the patient and family has shaped their health care experience. The purpose of this article is to highlight the factors associated in decision making for parents of children with life threatening illness who need palliative care.
Children are the flowers of life. They bring joy and happiness to our world. Let’s be kind to them, let’s make them happy and let’s give them a guiding hand.
Palliative Care for children with life-limiting conditions aims at taking total care of the child including body, mind and spirit. It is a holistic, professional, and active approach to caring, that includes but is not restricted to pain and symptom management. It also involves providing support to the family. The care begins when chronic illness is diagnosed and continues regardless of whether a child receives curative treatment directed at the disease. Effective palliative care requires a broad multi-disciplinary approach that includes the family and makes use of available community resources. It can be successfully implemented even if resources are limited. It can be provided in tertiary care facilities, in community health centres and even in the child’s home. It extends throughout the continuum of the care. Childhood is considered to begin from the perinatal and neonatal period until 18 years of age.
There are numerous conditions which affect children and their families like: • Congenital disorders • Metabolic disorders • HIV infection in children • Thalassemia and other haematological disorders • Organ failure • Cancer. Shared decision making has been defined as a relationship among patients, family, and one or more health professionals where the participants clearly establish the decision that needs to be made, discuss the options (including outcomes of options), elicit patients’ values and preferences associated with those options, and engage patients or their surrogates, to the extent desired, in making and implementing a decision. However, there are various factors that play an important role in decision making such as economic status, family type, marital status, age, religious beliefs, and educational qualification.
Method and materials:
Review of the literature collected from journals and articles.
Factors in Decision Making
When an adult is seriously ill, the patient and family may accept the approach of death and reflect on the person’s achievements and the fact that they lived a “full” life. When the patient is a child and death is imminent, hope for a full life can remain prominent. Parents look for technological advancements and new interventions because they are available, and they confer hope of continued life. This tendency and the pace of technological innovation are mismatched with the paucity of balanced, evidence-based approaches to their use. Parents are unable to make concrete decisions about easing the pain of the child, rather they focus on increasing the life expectancy of the child. Palliative care clinicians must play a role in assisting patients and families in complex decision making and to help them understand difficult issues and limited opportunities and alternatives in complex life-threatening illness and in end of life.
In a study conducted by Kurashima et al. on factors associated with location of death of children with cancer in palliative care it was observed that 59% of patients in this study died at home. Factors significantly associated with dying at home were: male, low educational level of the caregiver, and low educational level of the mother. Gender was the only independent factor associated with location of death: a boy had a higher risk of dying at home, when compared to a girl.
The parents and siblings raise the issue regarding care, something which the child had discovered herself online. The mother and the siblings and indeed the patient herself are looking for something to ‘try’. ‘Try’ is the word parent’s use in the hope of increasing their child’s life expectancy.
Another study conducted by Carrols et al, on the influence of decision-making identified by the parents of children receiving paediatric palliative care, found that four dominant interrelated themes permeated parent’s discussions about the decisions they were making for their children and the process of decision making.
- First, orientation and direction (including the sub themes of goals, hopes, spirituality and meaning, and purposeful effort) connotes the parents’ effort to establish and clarify the broad context of decision making.
- Second, defining what is good for the child (including quality of life and suffering, and normalcy and normalization) conveys how parents posed questions and pondered about what decisions would be in the child’s best interests.
- Third, the entwined theme of relationships, communication, and support reflects how parents reported the social and interactive nature of decision making.
- Fourth, the theme of feelings and personal accountability focuses inward as parent’s report efforts to deal with their emotional responses and self-judgments.
Substitute decision-makers take decisions when parents are unable, unwilling or not capable to act as decision-makers. Little literature in this area is available, but can create difficult situations and disagreements, especially if parents continue to be involved without being the designated decision-makers.
Age of the parent and the child plays an important role in the process of decision making. More research has to be done in this area to assess these factors. In a prospective cohort study conducted by Feudtner et al. on a parent’s hopeful pattern of thinking and emotions affecting paediatric palliative care decision making found that parents report extreme emotions, both negative and positive, when their children are seriously ill. Parental affect is influenced by how the child is faring and it likely influences how parents perceive their child’s health status, impacting medical decisions made on the child’s behalf. People use feelings when making decisions, specifically regarding whether to seek additional information and whether to select a course of action based on the emotions it generates. Individuals who have higher levels of positive affect are less likely to change the current status, while those with higher levels of negative affect are more willing to pursue a different course of action.
Hope, like goals, was another general framework that parents used when speaking broadly about their decision making. Unlike when they talked about goals, when parents were speaking of “hopes,” they were less likely to use adjectives, realistic or unrealistic, to modify their words. For example, one parent stated that “I’m always hoping that something will happen that makes this.” Another parent said, “I have a lot of hope that my child can get better, will get better.” Hope was also something that could be quantified, such as either having more or less hope.
Socioeconomics and family structure also play an important role in the process of decision making. Parents in a joint-family usually rely on the elders of the family while engaging in decision-making for their child. Parents from a low socioeconomic background rely on the physician to make an active plan and decision for the child while keeping in mind their financial situation. Parents usually prefer to take the child home rather than engaging in palliative care treatment.
A study by Hexem et al. found that most parents of children receiving palliative care felt that religion, spirituality and life philosophy was important in helping them deal with tough times, and most parents reported either participation in formal religious communities, or a sense of personal spirituality. A minority of parents did not wish to discuss the topic at all. Some described that their beliefs and practices were associated with their overall outlook on life, questions of goodness and human capacity, or that ”everything happens for a reason.’’ Religion, spirituality and life philosophy was also important in deﬁning the child’s value and beliefs about the after-life. Prayer and reading the bible were important spiritual practices in this population, and parents felt that these practices inﬂuenced their perspective on the medical circumstances and decision-making, and their locus of control. From religious participation and practices, parents felt that they received not only support from both their spiritual communities and from God, but also peace, comfort, and moral guidance. Other parents reported questioning their faith, having feelings of anger and blame towards God, and rejecting their religious beliefs and/or religious communities.
To conclude there are numerous factors that contribute to decision making of parents in children’s palliative care. It is important to take into consideration all the factors that may prevail in the families to devise an active plan of action for the child.
- Bakitas M, Kryworuchko J, Matlock DD, Volandes AE. The critical need for a shared agenda to foster informed patient choice in serious illness. Palliative Medicine and Decision Science. 2011; 14(10):1109-16.
- Kurashima AY Latorre Mdo R, Teixeira SA, De Camargo B:Factors associated with location of death of children with cancer in palliative care. PubMed.2005;3(2):115-9.
- Carroll, Mollen CJ, Aldridge S, Hexem KR, Feudtner C. Influences on decision making dentified by parents of children receiving pediatric palliative care. A JOB Primary Research. 2012:3 (1) :1-7.
- Feudtner C, Carroll KW, Hexem KR, Silberman J, Kang TI, et al. Parental hopeful patterns of thinking, emotions, and pediatric palliative care decision making. Arch Pediatr Adolesc Med. 2010; 164(9):831-9.
- Hexem KR, Mollen CJ, Carroll K, Lanctot DA, Feudtner C. How parents of children receiving pediatric palliative care use religion, spirituality, or life philosophy in tough times. J Palliat Med. 2011: 14:39-44.