Adolescents Coping with Terminal Illness
Sunflower Counseling in Montana
The adolescent period of life is a time for great change. The teen is not only changing in physical appearance, but also many changes occur with their self-esteem, independence, social skills, and self-awareness. This can be very stressful for families to support and nurture their children. Proper space must be given to experience this normal process. Because so much is going on physically and emotionally, most adolescents are not thinking about death or illness affecting their lives. They feel invincible and able to do anything they set their mind to. They have so much life ahead of them and all the time in the world to accomplish their goals. This is much different than seniors who come to the end of their lives. It is also much different for the adolescent who is coping with a terminal illness, who must in many ways deal with many of the same problems as the senior. An adolescent in this position has to make mature decisions such as how they want their treatment to look, and what to do with their belongings upon their passing. It is here where the counselor assists the adolescent and his or her family with their struggles at such a devastating time.
One of the most important aspects of helping an adolescent with this tremendous life change is the focus on palliative care. Palliative care is “the multidisciplinary care of patients with incurable or life-threatening illnesses (Pritchar, Cuvelier, Harlos, & Barr, 2011).” According to the World Health Organization (2015), this definition can also extend to the mind, spirit, as well as the support of the family. Palliative care can assist patients with making difficult medical decisions and help the family plan for the future. (Lyon, Jacobs, Briggs, Cheng, & Wang, 2014) This pro-active mindset is important for adolescents to feel they have a voice in their treatment and decision-making about end-of-life-care (Lyon, Jacobs, Briggs, Cheng, & Wang, 2014). Lyon and colleagues (2014) also found it was helpful to first have conversations about the adolescents’ values and goals before discussing treatment preferences.
Adolescents who are undergoing medical treatment and serious illness may feel a loss of their independence. They are dependent on their parents for “physical, financial, and emotional needs.” (Pritchar, Cuvelier, Harlos, & Barr, 2011).” This can lead to isolation and withdrawal from their peer groups. They may also be reluctant to enter into psychologically or physically intimate relationships due to the limitations of time and energy, and the fear of hurting another person upon their death (Stillion, & Papadatou, 2002).
There is a lack of many studies behind the positive effect of relationship groups among adolescents dealing with terminal illness – despite the fact that relationships are shown to provide a tremendously positive effect on quality of life. According to Evans, Mallet, Bazillier, & Amiel (2015) friendships are a powerful healing force for failing health. A close network of support from friends can help the patient live longer, remain healthier, and have a more positive outlook (Evans, Mallet, Bazillier, & Amiel, 2015). Social relationships can also help such students cope better at school. Positive rapport and bonding with others can help these adolescents experience less depression, anxiety, and a higher level of self-esteem (Evans, Mallet, Bazillier, & Amiel, 2015).
Maintaining close contact with friends is challenging for adolescents undergoing treatment. This can lead to less socialization and more isolation because some peers may not know what to say to their friend in need (Freyer, 2004). Cassano, Nagel, & O’Mara (2008) found that adolescents who were able to talk to peers who were going through similar situations reported it was helpful to share similar experiences. It was also helpful to not have to explain their extensive treatments and terminologies.
Professional psychosocial support is extremely valuable in helping the adolescent gain understanding and support in processing their illness. This support system may include psychologists, youth workers, music therapists, social workers, and other supportive care workers (Pritchar, Cuvelier, Harlos, & Barr, 2011). If the adolescent is under much distress, depression, or is experiencing anxiety it is highly recommended to consult with a mental health professional. It is also greatly beneficial for the counseling support to begin in the early stages of the disease. This will help the family to be able to process the event and help them to return to “normal life” after the patient’s death. (Pritchar, Cuvelier, Harlos, & Barr, 2011). School can provide a meaningful place to help with coping. It can be therapeutic to participate in purposeful activities at the school and gain support from their teachers and counselors (Heller, Coleman, Best, & Emerson, 2013).
According to Pritchar, Cuvelier, Harlos, & Barr (2011) there is a lack of awareness of the special needs of the adolescent population for healthcare policy. Pediatric services typically care for patients who are under the age of 17, while adult services are for all patients over the age of 18 (Pritchar, Cuvelier, Harlos, & Barr, 2011). This can make it difficult for adolescents who have “distinctive needs which may not be met by either the pediatric services of younger children or adult services which are predominantly geared toward older adults and seniors” (Pritchar, Cuvelier, Harlos, & Barr, 2011). Needless to say, the care and treatments are also expensive and these young people are reliant on their family for financial support. This can be stressful for parents who are trying to not only support their child and get the best treatment options, but to also help emotionally and provide sustenance. Thus many patients who are receiving palliative care can often be too burdened by their own decisions and illness to really advocate for systems changes. Their families are too overwhelmed and too grief stricken to want to do anything about it (Pritchar, Cuvelier, Harlos, & Barr, 2011).
Cultural, religious, and spiritual values must also be considered when working with adolescents who are diagnosed with a life threatening illness. Parents need to consider the various questions their child has about death, and what may potentially happen after death. A counselor should always check in with the family before relaying any assumptions or values about death. It may be helpful to help the family discover their own values and beliefs. They may want to discuss God and an afterlife. Adolescents may be developing their own belief systems and be doing their own research about death and an afterlife. It is important to be open to all of these ideas and suggestions and act as a supportive counselor who is willing to listen and help explore.
Mathijesen (2011) examined the important role personal beliefs such as religion or the belief in external forces can have on individuals undergoing a crisis or loss. In using the personal belief system of a higher power the individual absolves themselves of the responsibility for their existence and the outcome that results (Mathijesen, 2011). This can be helpful for adolescents who seek a higher power and to help them feel like their life has meaning and a greater purpose. It also helps the adolescents feel less control over their personal situation and thus feel less anxiety about the situation. This belief system is helpful for adolescents who want to feel they can communicate with the deceased or still feel a connection to their family and friends upon their own passing. Some teens in the study felt a reassurance about death and “an active cognitive coping mechanism when faced with death (Mathijesen, 2011).”
Ethical concerns may arise when working with a terminal adolescent patient and their family. The practice of informed consent and full disclosure of diagnosis is common to western culture, but many non-western cultures place the families’ needs above the individuals (Bates & Kearney, 2015). Adolescents may also wish to have a different treatment process than their family wishes, or possibly decide to discontinue treatment. Many dying adolescents already have significant experience with the treatment of their illness possibly spanning months or even years (Freyer, 2004). In cases where the prognoses is very poor, or without a definitive treatment they may decide to not even consider treatment options. Currently adolescents who are 14 years and older are deemed legally competent to make medical decision pertaining to their end of life care and treatment options (Freyer, 2004). In some cases children who are between the ages of 10 to 14 have shown that they have the maturity and understanding to have input in the decision making for their treatment.
It is not surprising that many parents may be reluctant to communicate the severity of an illness with their child. Yet effective communication is highly recommended for the coping of an adolescent. Many parents may want to change their language when talking about the illness. They may not like to refer to “death” or “dying”, and instead say he or she “is getting ready to leave us” (Bates, & Kearney, 2015). It is a difficult line because these same parents must provide accurate information about the nature and severity of the illness to help their adolescents understand the cognizant nature of death.
Quality of life is an important factor to consider when examining a child’s life faced with a terminal illness. With continuing improvement in medical care and research many children are surviving long after their diagnosis suggested. Because of this it is crucial to consider ways in which life quality can be at its best no matter what the prognosis. This is because the day-to-day impact of having a sick child may be difficult and exhausting for parents (Carter, Edwards, & Hunt, 2015). Some organizations can provide family support workers who help support the family and promote resilience, create trusting relationships, and accompany the family throughout various stages of crisis (Carter, Edwards, & Hunt, 2015). These workers also help families to feel less isolated and provide additional services they may not receive through their other care outlets.
Terminal illness is often a devastating process no matter what the stage of life. Yet it may be even more painful for adolescents who are just gaining their autonomy and feel as though they are robbed of the time they have left. Thus it is helpful for these youths to have the support of family, friends, palliative care, counselors, and family support workers. This collective team approach can help the adolescent to feel more connected to people around them and also prepare for their end-of-life. While this is a monumental life change for everyone involved, the adolescent can still feel like they are part of the world and their life mattered.
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