Running head: THE DYING TEEN: A TOTAL FAMILY EXPERIENCE

The Dying Teen: A Total Family Experience

Kathleen Minor
Western Washington University

The Dying Teen: A Total Family Experience

The Dying Teen: A Total Family Experience

Introduction
I met my fiance in the spring of 2008. As spring led to summer, we attended a social
gathering of a mutual friend at a popular lake. I saw he was by himself, and as he took his shirt
off to swim, I noticed a large and new abdominal scar. When he turned around, I saw a large
keloid that ran under the length of his right shoulder blade. As I approached him to inquire about
his scars I noticed a large lump just below his left shoulder. Perhaps insensitively, I blurted out
What happened to you? I soon discovered that at 18, he had been battling testicular cancer for
the past year and a half which had metastasized to his stomach and lungs, requiring his upper
lobe to be entirely removed on the right. The lump just below his left shoulder was his port for
chemotherapy that had not yet been removed.
Jesse and I are still together, seven and a half years later. I have been present, along with
his parents, at every blood draw, PET and CT scan, X-ray and doctors appointment. I have had
countless long hours of discussion with both him and his parents about the treatment he received
and how he felt while the medical team managed his condition.. I learned that while Jesses
parents wanted him to be as pain free as possible, he greatly disliked the feeling of over sedation.
Tensions arose when his mother would push his patient controlled analgesia while he was asleep
to keep him asleep. When I asked his mother about this, she simply stated, Well thats what I
thought he would want.
Although I am just beginning my nursing career, I have great interest in the field of
oncology, palliative and hospice care. When given the opportunity to research a topic of our
choosing, I immediately thought of Jesse as an adolescent patient near end of life, and how such
a diagnosis affected him and his family. The impact of end life care on the teenage patient and

The Dying Teen: A Total Family Experience

family relates to the Institution of Medicine recommendations by addressing the unique needs of
the teenage patient and the need to collaborate with physicians to develop a more innovative care
model. To provide the most holistic end of life care for teens, it is essential to educate both the
patient and family on end of life treatment early in a terminal diagnosis. In addition, nurses and
medical staff must promote patient autonomy, practice sensitive communication and provide
ample resources for parents both during treatment and after the death of their child.
Finding Sources
When I began to research, I focused on key words such as palliative and hospice care. To
narrow my search, I then combined palliative and hospice care with the key word pediatrics.
Using the term pediatrics, I was finding a lot of information on school age children. After I
discussed my findings with my group and research and writing studio employees, I changed
pediatrics to adolescent and/or teen and began to accumulate resources.
I was able to find five sources that related to my topic. One source found was a literature
review on parent insights and experiences in the pediatric intensive care unit. The remaining four
are peer reviewed articles on: developmental needs of teens during end of life, resources
available to dying teens and families, parent personal needs and desires during their childs end
of life care, and bereavement care.
Summary and Analysis
Promoting Patient Independence
Reaching end of life due to a terminal diagnosis has a damaging psychosocial impact on
the teenage patient. At a time in psychosocial development when the adolescent population

The Dying Teen: A Total Family Experience

should be discovering self-sufficiency, they may be faced with asking for help and relying on
medical staff or caregivers to provide intimate care in not only a vulnerable health state, but
vulnerable developmental state as well. When treatment becomes too overwhelming, the teen
patient may exhibit maladaptive coping behaviors such as hostility, aggression, and even
refusal of treatment (Davis, 2009). Ineffective communication leads to poor care and
consequently refusal of treatment, including rejection of comfort measures such as pain
management. Rejection of pain management due to the overpowering feeling of lost
independence leads to poor quality of life for the adolescent patient.
Nurses can help an adolescent patient feel they have reclaimed some independence by
encouraging them to partake in their care and dictate activities when able, such as when to bathe,
sleep, eat, and visit with friend. The adolescent population places high priority on time with
friends and peer support, so educating on available support groups for teens with a similar
prognosis may lessen patient feelings of social isolation (Davis, 2009).
The notion of promoting autonomy should remain continual not only in the teen patients
activities of daily living, but in end of life treatment planning as well. The transition for both
parents and teens can be difficult and cause a delay in important decisions concerning end of life
care. The importance of initiating a plan of care at the start of a terminal diagnosis is essential to
ensuring the adolescent patient has time and opportunity to express their values, beliefs and
preferences for treatment (Wiener et al., 2015). Despite a significant number of adolescents
dying every year from terminal illness, limited tools existed to ensure their values and beliefs
were honored and documented.

The Dying Teen: A Total Family Experience

The medical community recognized a much needed tool, designed for adolescents in a
developmentally appropriate manner, to gather and record values and beliefs to better ensure
implementation. In 2008 the My Thoughts, My Wishes, My Voice document was created in
collaboration with multiple physicians and nurses as a tool to gather adolescent desires and
opinions to continually promote independence in teens. Furthermore, it provide relief for
uncertain and overwhelmed parents about fulfilling their childs end of life treatment.
The My Thoughts, My Wishes, My voice document allows the patient to name
individuals to dictate their end of life care choices if they are unable otherwise. The document
reflects the same material as a Physicians Order for Life Sustaining Treatment (POLST) form
that a geriatric or adult patient near end of life might complete. In addition to treatment questions
regarding antibiotics, pain management and mechanical ventilation, psychosocial and
recreational aspects of care are also included. Topics such as favorite food, music, books, movies
and how the patient would like to be remembered are also addressed (Wiener et al., 2015).
Parent Considerations for Nurses
Receiving news and discussing care concerning a dying child is emotionally devastating.
Despite the emotional stress Inglin, Hornung and Bergstraessers study on the family and
pediatric patients needs states parents felt they received helpful and informative educational
materials and that their inquiries about diagnosis and treatment were encouraged (2011).
However, no matter how well informed, a time of emotional turmoil and countless appointments
can cause information to become overwhelming and mentally or physically lost. In a separate
study conducted by Mullen, Reynolds and Larson, all 56 sets parents of patients in a pediatric

The Dying Teen: A Total Family Experience

intensive care unit reported not just the need of information to feel participatory in their childs
care but the need for frequent reminding of diagnosis or treatment details (2015).
Conflicting data exists about directness and empathetic delivery of diagnosis, treatment
and prognosis to parents. In Inglin, Hornung and Bergstraessers study, 85% of parents stated
that both nurses and providers were empathetic and promoted open and clear communication
(2011). Inversely Mullen, Reynolds and Larsons study reported 72% of parents reported unclear
and unprofessional communication by medical staff while 68% reported feelings of anger and
hurt due to inconsiderate comments (2015).
Parent Requests for Medical Staff
At end of life, parents become an important advocate for their child along with the
assigned nurse. One parent in the study recounts that while their desires in nutrition for their
child werent completely dismissed they were delayed, stating they gave her too much food, and
she had a stomachache, but we were told to overlook it for ten days. It is very sad that a mother
is not noticed in the hospital (Inglin et al., 2011). Although parents were grateful for the
medical teams commitment, customizing care to their child was an issue. While providers and
nurses have learned and practiced procedure in dealing with specific aspects of treatment, it is
important to provide personalized care. Tailored treatment improves quality of life for the
patient, therefore reducing stress on the family and patient.
A reoccurring desire for parents is for their child to receive care and subsequently die at
home. In fact, receiving home health services was greatly preferred to an admission to a pediatric
hospice house. Not only is greater comfortability reported in the home, parents also reported a
better ability to manage care with the help of home health services. Parents appreciated the

The Dying Teen: A Total Family Experience

respite support of visiting medical personnel and the time it provided to interact with their child
in a known and comfortable setting until death (Inglin et al., 2011).
After the death of the patient, bereavement resources are immediately provided for the
family. Physicians, nurses and social workers provide ample information on support groups,
therapists and educational handouts on coping with severe loss (Longden, 2011). Parents of
deceased adolescents also reported receiving extensive sympathy cards, phone calls, and other
forms of contact from the medical staff to express condolences. Although appreciative of the
attention and support, parents stated the communication and support received was short lived and
desired ongoing bereavement care and contact with associated medical staff (Inglin et al., 2011).
Synthesis
A dying teen faces a difficult, multifaceted paradox: the desire to control their own death
combined with the developmental drive to mature, explore and independently survive. Davis
(2009), Inglin et al. (2011) and Mullen et al. (2015) unanimously voice the importance of
encouraging and supporting the teen patients involvement in all aspects of treatment to
compliment and enrich a sense of individuality and autonomy.
There seems to be a notable inconsistency in parents feelings toward the medical staffs
ability to openly discuss patient treatment and diagnosis in a sensitive manner. Whether the
discrepancy was due to a specific individual or a medical teams collaborative inability to
professionally handle anxious parents was not clear in the research. Although the My Thoughts,
My Wishes, My choice document is praised for its detail and holistic view of teen patient care, it
was only designed in 2008 and no research indicates it is a staple utilized by medical staff when
discussing end of life decisions with dying adolescents. While POLST forms may differ slightly

The Dying Teen: A Total Family Experience

state to state, the same general information is addressed and the POLST tool is used nationwide.
Inconsistent research findings in parent satisfaction combined with parent desires for repeated
information, Mullen et al. (2015) indicates the need for a widely accepted method for clarifying
end of life information with adolescents to help comfort overwhelmed parents in a time of
intense grief.
With ongoing tests, procedures, treatment and observation, parents spend the majority of
their time with the same physicians, nurses, social and home health workers. According to Inglin
et al. (2011), parents stated medical staff not only treated their child while terminally ill, but staff
also acted as their primary social contact and support. When interviewed after the death of their
child, a parent recalls I lost my daily routine; you lose your child and almost your social
network as well (Inglin et al., 2011). The same physicians, nurses, social and home health
workers are not always available for continued bereavement care. To ease parent feelings of loss
and social isolation, a bereavement care team should be assigned to the patient and family from
the onset of a terminal diagnosis. The established bereavement team would have the benefit of
knowing the patient before death, therefor providing both patient and family the comfort in
knowing a familiar face and confidant will be available after their child has passed.
Conclusion
My research for this topic was extremely difficult. As I sifted through articles on EBSCO
and CINAHL, many were only available through library loan. I found that although end of life
care for school age children or younger yielded many results, very little information exists on the
adolescent population. The focus on school age children, combined with the low popularity on

The Dying Teen: A Total Family Experience

academic search engines, illustrates a lack of resources and research in adolescent end of life
care.
I have never cared for a dying adolescent as a nurse, but found solace in knowing there is
a tool available specifically designed to attempt to capture everything that is important to that
future patient. I found it both sad and frustrating that at such a terrible time in a parents life,
some felt their medical staff was insensitive and that their needs as parents were going unnoticed.
I had never considered what becomes of parents after their child has passed, and now recognize
there is a serious need to establish a bereavement team at the beginning of a terminal diagnosis to
provide a consistent presence for family comfort.
I was very passionate about this research because it was so relatable to instances in my
life. Completing this assignment has not only improved my research skills, but has taught me to
think more holistically about providing care. By analyzing research Ive learned limited
resources inhibit choices made by all parties involved: teens, parents and medical staff alike.

The Dying Teen: A Total Family Experience

10

References
Caring for Pediatric Patients' Families at the Child's End of Life. (2015). Critical Care
Nurse, 35(6), 46-56 11p. doi:10.4037/ccn2015614
Chapter 35: Caring for the child with a chronic condition or the dying child. (2009). MaternalChild Nursing Care: Optimizing Outcomes for Mothers, Children & Families, 1133-1156.
Philadelphia, Pennsylvania: F.A. Davis Company/Publishers.
Inglin, S., Hornung, R., & Bergstraesser, E. (2011). Palliative care for children and adolescents in
Switzerland: a needs analysis across three diagnostic groups. European Journal Of
Pediatrics, 170(8), 1031-1038. doi:10.1007/s00431-011-1398-5
Longden, J. V. (2011). Parental perceptions of end-of-life care on paediatric intensive care units:
a literature review. Nursing In Critical Care, 16(3), 131-139 9p. doi:10.1111/j.14785153.2011.00457.x
Wiener, L., Zadeh, S., Battles, H., Baird, K., Ballard, E., Osherow, J., & Pao, M. (2012).
Allowing adolescents and young adults to plan their end-of-life care. Pediatrics, 130(5),
897-905 9p. doi:10.1542/peds.2012-0663