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Planning tool gives voice to young patients with life-limiting diagnoses
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Adolescents are a challenging group of patients.
They are transitioning from childhood into adulthood. Their “job” is to gain independence, formulate their sense of self and define their future roles.
Parents can have difficulty allowing their children to transition into adulthood in the best of circumstances, but when faced with a life-threatening illness, the reluctance can be magnified.
Christine A. Zawistowski
This puts health care professionals in a difficult situation when it comes to discussions about goals of care and end-of-life issues. Parents — who are technically the decision makers if a child is aged younger than 18 years — may not want to involve the adolescent patient, but doing so deprives them of the fundamental tasks of this age group.
Tools such as Five Wishes and My Wishes have been developed to facilitate advanced-care planning and end-of-life discussions for adult and pediatric patients, respectively. A new tool, Voicing My Choices, addresses the unique needs of young people with life-threatening illnesses.
In a study published in Pediatrics in 2012, Wiener and colleagues compared the Five Wishes tool with an advanced-care planning tool they previously developed called My Thoughts, My Wishes, My Voice.
The researchers compared the two tools using a 5-point Likert-type scale. The analysis included participants aged 16 to 26 years with a life-limiting diagnosis (HIV acquired at birth or early in life, or metastatic or recurrent cancer).
The researchers screened participants for their readiness to discuss end-of-life issues. The participants liked both closed- and open-ended questions and colorful pages that were easy to read and understand. The most difficult topic to contemplate was discussion of medical treatment; spiritual wishes were the least difficult topic.
Wiener and colleagues found no significant differences among patients based on age, sex, race or diagnoses. These findings were incorporated into a new document called Voicing My Choices, which the researchers concluded “provides youth, families and providers an opportunity to reduce the silence around the dying process by allowing an opportunity to share one’s voice.”
Many health care providers are uncomfortable with advanced-care planning; it is simply not part of their common practice. To overcome this discomfort, they should develop a standardized approach to advanced-care planning that can be incorporated into the routine care for every patient with a life-limiting illness.
One must identify specific time points to elicit patient preferences and goals. If this begins at the time of treatment initiation, it sends the message that attention to quality of life is important right from diagnosis and makes subsequent discussions less unexpected.
Before a patient and family can be engaged in these discussions, their readiness to do so must be assessed. The patient and family must acknowledge that cure may not be possible. They need to be willing to have conversations about future treatment or lack thereof, and the patient must be allowed to explore his or her thoughts, preferences and goals.
It is best to discuss these matters when the patient is in stable health rather than during an episode of physical decompensation.
The family must be engaged and willing to allow these conversations to take place. Parents may feel that by avoiding end-of-life conversations, they are being supportive, positive and not giving up hope. They should be educated that silence, avoidance of the issues and lack of communication can lead to more fear, confusion and emotional distance.
Lastly, all members of the health care team — nurses, social workers, psychologists and clergy — should be involved. Patients and families connect with different members of the health care team to different degrees, and conversations of this nature flow smoothly when there is a connection between the participants.
Voicing My Choices is the newest addition to the armamentarium of tools available to clinicians for advanced-care planning. These documents are instruments that provide some structure and guidance to the process.
If nothing else, they open the door to communication and give a voice to patients to explore their thoughts and feelings. That is the starting point for further conversations.
These documents are never really “finished,” and seeing them as something that develops and evolves is worthwhile.
References:
Five Wishes. Available at: www.agingwithdignity.org/five-wishes.php. Accessed on July 1, 2013.
My Wishes. Available at: www.agingwithdignity.org/catalog/product_info.php?products_id=85. Accessed on July 1, 2013.
Voicing My Choices. Available at: www.agingwithdignity.org/voicing-my-choices.php. Accessed on July 1, 2013.
Wiener L. J Palliat Med. 2008;11:1309-1313.
Wiener L. Pediatrics. 2012;130:897-905.
Wiener J. Pediatr Blood Cancer. 2013;60:715-718.
For more information:
Christine A. Zawistowski, MD, is a pediatric palliative care and intensive care doctor at NYU Langone Medical Center in New York. She can be reached at NYU Langone Medical Center, Department of Pediatrics, 462 First Ave., New York, NY 10016.
Disclosure: Zawistowski reports no relevant financial disclosures.