Palliative care needs
Addressing the palliative care needs of AYA patients
Note: Much of the information in this section is from Adolescent and Young Adult Cancer Program: A best practice framework for working with 15-25 year old cancer patients treated within the adult health sector , with the permission of Dr Palmer.
It is estimated that between 10 per cent and 40 per cent of adolescents with primary oncological disease will progress ultimately to palliation. AYAs frequently face challenges associated with complex symptomology.
Unfortunately many barriers still exist to early referral to palliative care services,  particularly for young patients, including negative association for families with the term palliative care. It is imperative that palliative and supportive care are introduced early so that young people have the time to build a trusting relationship with palliative care teams, both hospital and community based. This is particularly important for clinical presentations where the prognosis is known to be poor. Active treatment and palliative support can occur simultaneously.
When an AYA patient is facing death, it is important to maintain an honest relationship. Treating clinicians must have an honest discussion with the patient as an individual and offer them a choice as to how much information they would like and when. Family members can be included in this discussion or spoken with separately with the patient’s permission. AYA patients under the age of consent still need to be given the opportunity to receive this information with a trusted adult present. Time should be available after all discussions to answer questions and these conversations should be revisited as frequently as required.
Advanced planning for end-of-life care should be proactive, coordinated, multidisciplinary and incorporate the unique needs of the young person and their family. A clear plan of action can decrease the anxiety of caring for the young person and reduce the likelihood that the deterioration of the young person’s condition will be a crisis situation. This may or may not include anticipatory directives. There is a growing evidence in the literature for advanced care planning with the AYA population.
Ensure that general practitioners are included in all communication. The GP becomes increasingly important in the provision of care for a young person during the palliative stages of their cancer journey. This is particularly the case in rural areas where access to specialist palliative care is limited. The GP also in many cases will continue to see other members of the family during the bereavement phase and potentially for many years to come.
| Focus on the needs and wishes of the young person