Introduction

There is probably nothing adolescents dislike more than being singled out, or for things to seem out of the ordinary. The desire to have friends in your peer group and fit in with others is probably most strongly experienced by people at this stage of life than at any other time during the life span. Knowing you have a terminal illness is challenging, regardless of a person’s age, but in adolescence, there are some features of this experience that make it especially difficult. However, if the young adult is allowed to participate in his or her healthcare decisions and has the support of friends, family, and other persons in their lives, the last portion of a life, made shorter than expected by incurable illness, can be a time of personal growth and community engagement.

Terminal Illness in Relationships

Terminal illness is defined as a chronic medical condition in which the prognosis for recovery is unlikely and the patient is expected to live for no longer than six months to a year. Especially for teenagers, this can be a very difficult idea to make sense of due to the general sensibility that adolescents have that they are invincible. The resulting cognitive dissonance, (which is a theory that says when humans experience tension because of two opposing thoughts happening at the same time they will try to take action to reduce the tension by whatever means possible) can have significant psychological impacts. In addition to having to deal with the illness itself, the possibility of a great deal of physical pain, and the sense that one has no control over their own body, the time remaining might also be complicated by changing interpersonal relationships and the potential financial hardships such an illness can cause for families.

How well the teen will manage all of these difficult and rapidly changing circumstances is often determined by how much social support the individual has and how well he or she is able to accept the support that is offered. Psychologists such as John Bowlby and Mary Ainsworth have written about the concept of “attachment” and have provided some insights into how a child’s earliest bonding with their primary caregiver has an impact on relationships formed at later stages of life. They say most people fall into one of three categories of attachment styles, with those who form secure early attachments most able to negotiate social interactions throughout the life course. Those who experience either ambivalent or avoidant attachments in infancy tend to have a more difficult time with other relationships, but some individually are resilient and can overcome their early problems with attachment and form quality interactions later on. Both those who come to relationships easily and those who are resilient will find that they are better able to face the great existential dilemma of terminal illness with somewhat less trouble than those who struggle with attachment issues. These individuals might even experience the period of preparing for their death as a time of personal growth. The psychologist Judith Herman has written: “Just as basic trust is the developmental achievement of earliest life, integrity is the developmental task of maturity.” She sees the inter-connected nature of integrity and trust as the foundation for a caretaking relationship that “completes the cycle of generations and regenerates the sense of human community that trauma destroys.”

Some teens may find that dealing with terminal illness becomes a time in which they undertake and accomplish tasks they had only dreamed of doing, previously. It also might be a period of spiritual or intellectual engagement, particularly if they are confined to bed and yet are clear minded and able to be engaged in these pursuits. Community members, especially religious leaders such as a priest, rabbi, imam, or guru may be called upon to assist teens with questions of a spiritual nature. In-home schooling or tutoring may become necessary and young people should be encouraged to keep up academically for as long as is practical.

Another time that adolescents might be have to deal with terminal illness is when the ill person is someone they care about. This could be an ill parent, grandparent, sibling, friend, or other important person in their life. If the person is elderly and would be nearing a logical end of life but becomes ill in a way that takes some months to a year between onset and death, watching that person’s condition deteriorate can be stressful and anxiety causing. The situation is much more difficult when the ill person is the parent or other primary caregiver that the teen relies upon for a loving and nurturing relationship. Issues of terminal illness when the teen is in a relationship with another young person who is ill can be a source of confusion. Questions like “Why does this person have to go so young?” And even “Why them and not me?” are almost inevitable in these cases. Survivor guilt can add additional stressors for the entire family during what is already a difficult period. This can be further complicated by the normal adolescent need to define their own identity and begin to pull away from parental authority, especially if the teen is required, by the needs of the family, to take on additional responsibilities at home due to the absence of parents while visiting a hospital or hospice.

Lack of Support

One of the things that may happen when either a teen is ill or they are facing the illness of a loved one is that they might find some of the people they considered to be their friends are not spending as much time with them as before. Many people have a hard time being present during times of loss and grief because it raises questions for them about their own mortality, which may be something they are not ready to face. As a result, the affected teen may find themselves alone and lonely. It is at these times that the people closest to the adolescent need to be especially available. Emotional support and just taking the time to do things that the teen enjoys can be very valuable under these circumstances. Consider referring the young person, if they are under 18 years old, to the Make-a-Wish Foundation, which grants wishes to youths over two-and-a-half-years-old with a life-threatening medical condition. These experiences have been proven to enhance state of mind, improve health status, and even strengthen communities.

It is not uncommon for emotions like anger, guilt, sorrow, helplessness, loneliness and denial to be felt when someone is terminally ill. It is important that teens be allowed to express their feelings and have them respected. It may be necessary for the family to attend family therapy to find solutions for managing these emotions if they become overwhelming or disruptive. When death comes in unanticipated ways and may take some time following the diagnosis, there may or may not be the chance to come to terms with the impending death. Terminal illness comes with many logistical, financial, and emotional strains. Graphic images of decline and death may linger and be intrusive, traumatic memories. If symptoms of posttraumatic stress manifest, these need proper intervention by a trauma-informed therapist.

Coping

Anticipating death, whether it is one’s own or that of a loved one, has psychological consequences because the world may no longer seem safe and stable and people feel powerless to alter the outcome. Young people tend to cope better with exposure to terminal illness when they know they are loved, supported, and feel the freedom to ask questions, especially if it is about their own care. There may come a time when decisions about staying at home, going to hospice or palliative care and/or being hospitalized become important determinations to be made and including teens in these decisions will help them to feel empowered. This is true even if, ultimately, the care they need is not available at their desired facility. Just being allowed to voice their preferences can have a significant impact upon psychological wellness. It is also important to consider the wishes of adolescents regarding how they want to be remembered and memorialized. They may also have come to some conclusions about the level of care they want; how much relief of pain they desire, and other medical matters. Using a document such as “Voicing My Choices: A Planning Guide for Adolescents and Young Adults” may be helpful in guiding such a conversation and allowing the teen to record their last wishes. Families that are able to engage in such conversations will likely fare better following the death of the teen because they will know they provided the respect and dignity that all people deserve as they come close to the end of their lives.

At some point, teens who are terminally ill may come to terms with their situation. If they reach this stage of acceptance they will especially need the loving support of their families and friends, and those others may not have yet come to the same acceptance. For many people, acceptance is a state that takes some time following death, with an appropriate time of mourning. These differences in experience by the one who is dying and those around him or her can be stressful in and of themselves. The most important thing to remember is that it is the dying person who matters most at these times and being able to set aside one’s own condition to be present with the one who has only a limited time left to live is the priority, however painful this may be. Saying goodbye will inevitably be difficult for all concerned but it can also be very healing. Depending on the limitations that the illness may cause, planning sufficient time for teens to have a final visit with as many people as they wish to speak with one last time is an organizational task that extended family and friends can help with, so that immediate family do not have to carry the full burden. Including young children as a greeter for visitors can help siblings and other youngsters in the teen’s life feel valued and cherished under very trying circumstances. Judith Herman has said that “healthy children will not fear life if their elders have integrity enough not to fear death.” In the case of teens that are living with a terminal illness, they are experiencing profound physical illness. Nevertheless, their psyches can be helped when the adults in their lives face the challenges of the impending death fearlessly and with integrity. The reality is that young people do die, they are not invincible, and mortality must be faced. Young people will manage these tasks so much more smoothly with the aid of their loved ones than they will in actual or emotional isolation.

One type of intervention that can be used to assist everybody involved and need not be done with professional assistance, although that option does exist, is to use some of the much written about techniques that fall under the category of “mindfulness.” There are many books and recordings available to guide individuals choosing to explore the deep breathing and relaxation exercises, which can be used cognitively, or can easily incorporate a spiritual element. The advantage of these practices, which can be done alone or in groups, is that they do not have to cost anything at a time when finances may already be strained. Mindfulness has been proven to improve brain function, is calming, and if done in a group can enhance the filial or community bonds between individuals.

Teens who are facing death should be encouraged to be as active physically and mentally as is reasonable, given their condition. Being allowed to slip into boredom or depression wastes what little time they have. Continuing successes and project completions foster meaning and are affirming of the life they are still living. Caution should be taken to watch for signs that teens with a terminal illness are having suicidal thoughts or are engaging in self-destructive behaviors. As long as they are alive, life is a precious gift and they should be aided in living each and every day to its and their fullest potential.

References