Caring for teenagers who are dying can be quite challenging. Your teenage patient is at the point where he is trying to exert his independence and gain some freedom. However, as his disease progresses, he will become more and more dependent on others. With his general decline, his relationships with friends and his family will be affected, and his illness will have an impact on every aspect of his life.

Your patient may describe the hopes he has, and may focus on the future and what he wants to do. Although he likely understands his illness trajectory, he may talk about what he will do in the distant future. This is because he does not want to live in the shadow of his illness all the time. He wants to have as much normalcy in life as possible and not have people focus on his illness all the time. This may seem like a form of denial, but it is a very normal way for teens to continue to live their lives in the face of their disease and its progression. Therefore, it is important that you acknowledge your patient’s desire to embrace life.

Changes in physical appearance and ability are major aspects of illness that deeply affect teenagers. Physical changes can include hair and weight loss and decreased energy.These changes can significantly affect a teen’s body image and how he views himself in the world. As a result, your patient may withdraw. During these times, you should assess for signs and symptoms of depression. Teens are usually straightforward, so ask your patient direct questions about his symptoms and their effects on his life. Teens are usually willing to talk about these issues with health care providers whom they trust and have a relationship with.

In terms of emotions, be prepared for your patient to display a variety of reactions. Medications, such as dexamethasone, may have a significant impact on mood. Expressing anger and frustration at his situation would be quite normal.

Peers and friendships are extremely important to teenagers. So it will be vital to recognize how your patient’s illness has affected these relationships and encourage him to spend time with his friends. He may need someone to help organize or coordinate time with friends when he is feeling well enough for some activity. However, he may only be able to tolerate short visits if he is tired from treatments or is experiencing a general decline in his overall health. Encouraging him to maintain his social media connections (which is likely happening anyway) may be a good way for him to stay connected with friends when he is quite ill or has limited energy.

You should consider the impact of your patient’s illness on his friends and on his significant other, if he has one. Identify resources that could help his friends and their families if they lack experience with death and dying. Knowing your patient’s limitations and abilities and how these may continue to change is also important for friends. So you should discuss with your patient and his family about how to communicate information about his illness and decline. The parents of his friends may want to know what is happening so they can prepare their children for changes and the loss they will experience.

Your patient’s relationships with family members will change as his illness progresses―in particular, his relationship with his parents. As he becomes more dependent on them, they will need to manage his symptoms and medications, and eventually his basic care needs, such as personal hygiene. Losing the ability to function independently can be particularly distressing for teens and also for parents. As these losses accumulate, the reality of your patient’s illness will become difficult to ignore. It will affect the whole family, particularly his siblings, if he has any. His family will realize that trying to maintain a routine and a degree of normalcy may become more difficult as his disease progresses. A key role for the health care team will be preparing the family for further changes and helping them cope.

Discussing specific treatments and end-of-life decisions, such as a “do not attempt resuscitation” order, can be quite difficult with teenagers. A challenge for the health care team is determining when to have such discussions and whom to involve. When the focus of care has changed to a palliative approach, research shows that teens actually want to be more involved in their health care decisions.Your patient may not have wanted to participate in treatment decisions in the past, but he may wish to now. This may be because of the limited treatment decisions usually offered with oncology treatments when first diagnosed, as well as the overwhelming nature of an initial diagnosis. So it is crucial to focus on how he wants to be involved in decisions about what care he receives, where care is provided and how often follow-up and clinic appointments are scheduled.

Be flexible in order to maximize your patient’s time. Avoid setting up long appointments or making him wait in a clinic to see you. If he is trying to attend school, work around his class schedule and help him get to school as much as possible. A crucial role for the health care team will be helping his school cope with the progression of his illness and his death. Preparing school staff to deal with students under these circumstances will be an important consideration for the health care providers and school administration.

Palliative care at any age requires managing symptoms to ensure good quality of life. Teenagers can have significant symptoms, so make assessing and managing your patient’s symptoms a priority.

References

Coccia PF, Altman J, Bhatia S, Borinstein SC,et al. Adolescent and young adult oncology: clinical practice guidelines in oncology. JNCCN. 2012;10(9):1112-1150.

Freyer, DR. Care of the dying adolescent: special considerations. Pediatrics. 2004;113:381-388.

Freyer DR, Kuperberg A, Sterken DJ, Pastyrnak SL, Hudson D, Richards T. Multidisciplinary care of the dying adolescent. Child AdolescPsychiatrClin N Am. 2006;15:693-715.

Pritchard S, Cuvelier G, Harlos M, Barr R. Palliative care in adolescents and young adults with cancer. Cancer. 2011;117(10 Suppl):2323-2328.