Coping with loss
Loss is inherent and pervasive in cancer care. After a patient’s death, clinicians not only have to put aside their grief and return immediately to work, but often also feel that they have no one to talk to about their experiences and are plagued by painful memories.34
Lack of training in managing loss can exacerbate a care team’s stress and shape the quality of care provided. Moreover, clinicians with insufficient education, hands-on training, and support in the delivery of EOL care to AYAs are susceptible to increased stress and feelings of despair, inadequacy, failure, depression, and burnout.
There is a pressing need to develop effective and lasting ways to help the health-care team acquire knowledge and skills about providing palliative care to AYAs at all stages of their career to foster a resilient and strengthened workforce.78
The Schwartz Center Rounds® program is an example of a model developed to enhance compassionate care by processing shared emotions. In contrast to traditional medical rounds, the focus of the Schwartz Rounds is on the human dimension of medicine. Interdisciplinary caregivers have an opportunity to share their experiences, thoughts, and feelings on challenging and thought-provoking topics drawn from actual patient cases.
The premise of the program is that clinicians are better able to make personal connections with patients and colleagues when they have greater insight into their own responses and feelings (http://www.theschwartzcenter.org).
Introducing palliative care as added support
When upfront therapy is not successful, a provider’s first inclination is often to deliver hope to the patient by addressing other potential treatments and clinical trials. If palliative care has not been previously discussed, this is an opportune time to openly and honestly describe what the palliative care service can offer.
Often, AYAs and families can have quite negative associations with the term “palliative”,90 so it may also be helpful to use clear, understandable language to describe the role of the team and explain that members of this team have expertise in managing symptoms including pain.
Research in adult settings indicates that even this slight shift, to framing the palliative care service as a “supportive care service”, leads to patients and families having a better understanding of what the service does, a higher degree of perceived future need for the service, and overall more favorable impressions of it.91
Patients’ motivation to meet members of the palliative care team may be leveraged by opening a discussion around the symptoms that cause them most concern or anxiety.
Benefits of proactively introducing the palliative care team as early as possible should also be described clearly to the AYA, highlighting that inclusion of palliative care prevents unnecessary levels of pain and discomfort.
During disease progression, the transition between curative and palliative intent may be filled with uncertainties, thus requiring a deeper cooperation between oncology and palliative providers as well as sensitive and proactive communication with the AYA and family.92
Assess and address psychological distress
Providers should be trained to systematically assess the level of psychological distress in patients and to make appropriate and prompt referrals for symptoms of depression and anxiety.
One study found that 12 months after cancer diagnoses, 41% of AYA cancer patients reported an unmet need for counseling and other forms of psychosocial support.93
Comprehensive psychological care as part of standard cancer care provides opportunities for AYAs to individually meet with a psychologist and speak openly about concerns relating to their parents, family, and friends.
Relative to older adults, who may have more experience with allied and mental health professionals and psychological concerns, AYAs may benefit from more basic introductions to teach them about the roles of different professionals (eg, a social worker versus a clinical psychologist versus a chaplain) and the services each professional provides.
Despite the high incidence of mental health issues in the AYA years, AYAs may have less insight into the types of distress that they may experience.
Discussing various forms of distress that commonly occur may initiate conversations around AYAs’ concerns for others in their family and social circle, whose anticipatory grief may acutely affect AYAs. Such awareness may lead to efforts to conceal their distress in order to protect one another.94
Ensuring flexibility and continuity of medical care
Best-practice psychosocial care of AYAs across the cancer trajectory involves having a dedicated advocate/clinical champion28 to address their complex palliative care needs.
As AYAs transition toward EOL, having the consistency of contact with this one key “advocate” may be critical to assisting the young person to navigate this psychologically challenging time.
Palliative care for AYAs warrants a unique flexibility in care delivery depending on developmental stage, a flexibility not always innate for providers.
For example, physician trainees may be routinely accustomed to prerounding early in the mornings, but may find that younger AYAs benefit from the later awakening to accommodate developmental stage-related patterns of sleep cycles.95
Similarly, flexibility in scheduling appointments can be beneficial in order to suit normalized teenage routines and to avoid missing important life events.96
In some instances, enabling continuity of care may require teams to extend more creative flexibility toward AYA patients, while maintaining appropriate boundaries.64
For example, clinicians might consider providing a dedicated AYA email or phone line (eg, work mobile number) for AYAs to text or email nonemergent questions or concerns.
Similarly, in teams with rotating doctors “on call”, this may mean that in certain circumstances, clinicians make themselves available to a patient/family even when not “on service”. AYAs require a sense of partnership with their care providers in order to build trust and a therapeutic relationship over the course of treatment.38
Owing to the relational role of their developmental stage and their similar age to younger staff members, AYAs are more likely than older adults to form strong therapeutic relationships with their care teams,97 an alliance that can decrease the risk of adverse psychosocial outcomes when their medical team changes.98
AYAs and trainees benefit from mentored understanding of therapeutic relationships within the context of professional boundaries.