Teen terminal illness blurs boundaries

Blurring professional and personal boundaries can sometimes happen when it comes to caring for adolescents and young adults (AYA) with a terminal illness, according to a Flinders University palliative care expert.    

Ms Kim Devery, a lecturer in the Department of Palliative and Supportive Services, and colleague Mrs Sharon Bowering last week presented a keynote address at the Palliative Care Nurses Australia conference in Melbourne on how nurses can maintain good emotional health when providing palliation for adolescents and young adults.

Ms Devery said that health care workers are deeply committed to provide excellence in palliation when caring for patients in the 15-28 age group.

“As a nurse or doctor or social worker, when you are caring for young people, it really reminds you of your own mortality and of our families and the people we love,” Ms Devery said.

“It’s at times like this that we can cross over what is healthy for us and for the patient.”  Emotional wellbeing and proactive self-care practices are vitally important.

Based on the topic they delivered to postgraduates this year for the first time, the paper was awarded the 2012 Vivian Bullwinkel Oration Award by the Palliative Care Nurses Australia Conference Scientific Committee.

“We have a strong commitment to education of healthcare professionals about palliative care across the lifespan,” Ms Devery said.

“Adolescent palliative care is new discipline that emerged in the clinical setting in the past five years. We identified it as an area in which people needed training,” she said.

Adapting the Professional Boundaries Inventory developed by Melbourne’s Royal Children’s Hospital, Ms Devery and Mrs Bowering pose a series of questions that encourage clinicians to reflect about their practice.

“For example, are they sharing themselves with the patient’s family too much? For the patient, sometimes it might not be comfortable if a healthcare worker becomes an ‘inner circle’ person who might be displacing a family member or other friend who should be there.”

The inventory can be used as part of an individual’s professional development or by teams to determine, for example, whether attending every single funeral is good for the team members.

Ms Devery said the topic also helps students to understand adolescent developmental stages.

“These patients are unique and they’ve usually had a rocky road, because they’ve had a cancer or another illness that has caused their life to be shortened.

“They have had many years or many stints away from school, away from their friends and peer groups, which is incredibly important for a young person.

“There’s a lot of understanding and a lot of assessment that a clinician needs to be aware beyond just the biomedical viewpoint.”

The primary aim of the topic, Ms Devery said, was to help carers remain professional and to be mindful of their own wellness.

“So that they have enough physical and emotional energy to go home to their own family and friends and maintain their own social life, so that work doesn’t wash into their lives.

“And for healthcare teams, it means they can have shared goals, so the team members can be on the same page about what their purpose is and what they’re there for.”

(source: Flinders University)