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
Focus on the needs and wishes of the young person
- Young people should be supported to die in their place of choice.
- Focus on maintaining continuity of care. It is recommended that the original treating team maintain some contact with the young person. Young people are prone to feeling abandoned when their care is transferred.
- Continue to involve the young person in decision-making. This may involve health professionals having to balance the tension between what is considered best practice and respecting the young person’s autonomy in decision-making.
- It is important to identify and meet the patient’s ongoing rehabilitation needs. Physiotherapy and occupational therapy services can assist the young person to gain control and independence where this is possible.
- Provide the young person with the opportunity to explore spiritual or existential issues. Existential issues are likely to become more pressing for the young person during this stage of their illness and all young people should have access to the opportunity to explore these issues with skilled clinicians. Concerns relating to death, freedom, isolation and questions of meaning have been identified as potential topics for discussion with AYA palliative care patients. All professionals working with this group should be prepared to provide this support or be able to identify another person with an understanding of the young patient’s needs.
- Ensure psychosocial support is available and flexible. Young patients who are facing death need an opportunity to explore their feelings without fear of upsetting family members or partners.
Support family and friends
The young patient’s family members, partner and friends should have access to information about the dying process: what to expect, how to respond, and services available to assist them. This information should cover topics such as the physical process of dying (e.g. changes in breathing patterns), psycho-education, and looking for signs of symptom relief.
- Provide access to psychosocial support for family members and partners whose needs may increase at this time. Young children (offspring or siblings) will need particular consideration to ensure information provided is developmentally appropriate. Parents may often experience profound grief impacting on their roles as individuals, partners and parents to siblings. In cases where supportive care has been previously refused, it is important to repeat referral options during this stage. Appropriate referral information should be included for grief and loss therapists within the community referral directory.
- Continue to encourage peer interaction and support. This may be aided by recommending or engaging support options for peers. Many young people in the palliative phase of their illness can become isolated and lose the opportunity to chat with their friends and do the ordinary things that young people enjoy. However, the desire of young people to have involvement with their peers does not cease during the palliative phase.
- Give the family an opportunity to meet with a member of the treatment team following the death. Ideally this should be the primary (lead) physician, with another member of the team who was closely involved with the care of the deceased patient if possible. This meeting provides a forum for family members to discuss issues relating to the care and the death of their loved one, provide feedback to the treating team and receive both emotional and practical support to help them with grieving.
- At the time of the young person’s death, provide the family with bereavement support. Best practice support usually begins during the terminal stages of the young person’s cancer journey with gentle support and understanding offered to family members and education about what to expect and how to respond. However, at the time of death, the support provided by a senior staff member who is experienced in bereavement care can be invaluable. Issues that need to be considered during this time include managing the acute grief reactions of family members and the provision of appropriate information to support families to manage arrangements. The cancer care team should arrange this support, regardless of whether the young person dies at home or in hospital.
- Refer or inform family members and significant others of community grief and loss services. Teams working with AYA patients should be aware of such services and develop a referral directory of the appropriate grief and loss support services that are available. Provide this information to every family member or partner at the time of the bereavement consultation, no matter how well they appear to be coping at the time.
- Seek permission from the family of the deceased patient to inform other young patients about the death of their peer in a sensitive and timely manner. Other young patients who have had treatment at the same time as the patient who has died may have developed strong relationships and connections with them over a period of months. The death of a peer can have a significant impact upon other young patients and must be managed with sensitivity and care. Psycho-oncology support should be available during these times.
Support health professionals
Working with, and caring for, young people with life-threatening conditions can be highly stressful and emotionally draining. If not managed appropriately there is a danger of inferior work patterns and staff burnout.
- Ensure appropriate support and supervision is available for staff caring for AYA patients. Team awareness of the signs of compassion fatigue or burnout should be promoted through regular training and professional development and through team case consultation and peer review.
- Health professionals should be given access to psycho-oncology expertise or pastoral care support.
- Create opportunities for regular team debriefing after a patient’s death.
- Palmer S, Thomas D. 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. Melbourne: Peter MacCallum Cancer Centre; 2008 [Abstract available at http://www1.petermac.org/ontrac/pdf/AYA-Practice-Framework.pdf].
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- Joint Working Party on Palliative Care for Adolescents and Young Adults. Palliative Care for Young People Aged 13 – 24. London: Association for Children with Life-threatening or Terminal Conditions & their Families, National Council for Hospice and Specialist Palliative Care Services and Scottish Partnership Agency for Palliative and Cancer Care; 2001 Sep [Abstract available at http://www.palliativecarescotland.org.uk/assets/files/publications/PalliativeCareforYoungPeopleaged13-24.pdf].
- National Breast Cancer Centre, National Cancer Control Initiative. Clinical practice guidelines for the psychosocial care of adults with cancer. Camperdown, NSW: National Breast Cancer Centre 2003 Jan 1 [Abstract available at http://www.nhmrc.gov.au/_files_nhmrc/file/publications/synopses/cp90.pdf].
- Joint Working Party on Palliative Care for Adolescents and Young Adults. Palliative Care for Young People Aged 13 – 24. ACT: Bristol. 2007 [Abstract available at http://www.palliativecarescotland.org.uk/publications/sppc-publications/assorted-publications-on-specific-topics/palliative-care-for-young-people-aged-13-24-years].