Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer

Figures & data

Figure 1 Conceptual framework for adolescent and young adult palliative care education.

Abbreviation: AYA, adolescent and young adult.

Figure 2 Supporting quality of life at end of life: developmental considerations.

Abbreviation: AYA, adolescent and young adult.

Table 1 Supporting quality of life at end of life

Issue #1 AYAs may still be able to engage in their usual activities such as work, study, and socializing. Developmental factors • Independence, autonomy, and social/peer networks are likely to increase determination to engage actively in these aspects of their life, even as their disease progresses. Interventions • Support AYAs to continue to engage in their usual activities as much as possible. • Prioritize QOL concerns. This may require the provision of palliative medical treatment (eg, chemotherapy) to be delivered with an element of flexibility, involving “innovative therapeutic compromises,” where possible.^Citation64 For example, AYAs may wish to negotiate their attendance at hospital around important events like birthday parties, graduations, proms, and other important life events. Trainee considerations • Enabling continuation with usual activities may require trainees to alter any preconceived expectations they may have regarding “how” a patient “should” be spending their time as end of life nears. Issue #2 AYAs’ wishes/requests (eg, attending sports events, going out to clubs, other forms of developmentally normative risk-taking) may conflict with medical opinion/advice. Developmental factors • This should not be interpreted as necessarily reflective of the young person being “in denial” regarding their disease status and physical vulnerability. • AYAs tend to “yo-yo” between acceptance and preparation for death (eg, planning whom to give their belongings to), and what may appear like outright “denial” (eg, planning to move out of home, thinking about college). While some difficulty processing the reality of their own death and “mortality” may be developmentally normal,^Citation64 this “dual process” manner of reconciling one’s self to great loss and grief is also seen across the life span.^Citation108,Citation109 • Contributing to society, forging an “identity,” and being remembered are developmental imperatives for AYAs.^Citation29 Being able to engage in behaviors/ activities consistent with the AYAs’ sense of self/identity is likely to improve QOL during this stage. Interventions • Open, gentle conversations around the AYA’s wishes can help explore how the AYA understands their current situation, and identify what is important and meaningful to them. Conversations can be guided by advance care planning guides, so that these important choices are documented.^Citation74 • Assist AYAs to reconfigure their goals, focus on shorter-term activities that are still consistent with their values, and contribute to their sense of self-esteem and hope.^Citation110 Trainee considerations • Consider how important it is to feel as if your life “matters.” Think about Phase I trials in terms of the AYAs’ psychological needs as well as treatment outcomes. The crucial psychological need to be remembered and “to have mattered,” combined with AYAs’ altruism as a group, means that participating in research and clinical trials may form a part of legacy making for many AYAs.^Citation111,Citation112

Abbreviations: AYAs, adolescents and young adults; QOL, quality of life.

Table 2 Instructional strategies

	Strengths	Challenges	Examples
Experiential learning	Training experience in real-life settings or simulated bedside formats has potential to enhance real-life work	Requires time during busy clinical/inpatient days Requires availability of qualified local providers	Simulated patient/video playback; structured home visits; mentored hospice visits; Memorial Sloan Kettering Cancer Center’s Comskills
Group didactic opportunities	Foundational peer settings allow shared insight and learning experiences with one another (social and cognitive congruence)	• Requires curricular commitment of training center	Small-group EOL communication training sessions; palliative care rotations with peer discussion groups
Shared learning among care disciplines	Helps learners envision patient’s experience within context of multiple needs; teaches learners to develop patient strategies for utilizing wide array of resources/support	• Requires availability of multidisciplinary team representation	Joint consultations; family meetings with multiple care teams present; interdisciplinary grand rounds; clinical teaching conferences
Bereaved family members as educators	Provides unique perspective as family members share “lived experience” to facilitate palliative care discussions	• Requires special attentiveness to minimize emotional burden to bereaved family member	Bereaved parent panels at conferences; single sessions with bereaved family members and limited staff members; bereavement reunions hosted by hospitals
EOL training programs	Enables access to a structured, modular curriculum with teaching grounded in evidence base	Requires funding for programmatic development Requires protected time for learners	American Association of Colleges of Nursing ELNEC train-the-trainer program; Integrating Palliative Oncology Care into DNP Education and Clinical Practice; EPEC program; Center to Advance Palliative Care leadership training; and global examples from Portuguese Catholic University, University of Cape Town, and Mildmay Program in Uganda
Online learning	Expands access through flexible teaching formats, protects participants’ travel resources, allows learners to receive training at their own pace and location, adapts to a “social media” learning generation	• Requires access to Internet technology; ideally fosters ways for technology to translate into mentored patient care opportunities	International Children’s Palliative Care Network’s free eLearning modules
Learner networks	Expands trainee learning opportunities, networks, and collaborations, while minimizing programmatic redundancies	• Often requires access to blogging, document and resource sharing, eGroups, and listservs	Regional SIG; National Hospice and Palliative Care Organization member-exclusive professional community; collaborative journal clubs; joint case study teaching seminars

Abbreviations: EOL, end of life; ELNEC, End-of-Life Nursing Education Consortium; DNP, Doctor of Nursing Practice; EPEC, Education in Palliative and End-of-life Care; SIG, Special Interest Groups.

Table 3 Trainee, trainer, and patient perspectives on AYA palliative care training/learning priorities

Theme	Learner perspective
	Trainee	Trainer	AYA patient
Collaboration, roles, and models of care	The multidisciplinary team • Expose trainees to true collaboration modeled across fields.^Citation113 • Allocate time for learning perspectives and viewpoints of each team member. • Identify ways to include available experts for truly comprehensive AYA care.^Citation114	Roles/boundaries • Observe trainees’ interactions with AYAs (intensity of interactions and relationships with AYA patients). • Monitor trainee for possibility of confronting own mortality due to similarity in age to AYA. • Mentor trainees in areas of role definition, professional boundaries, and transference.	Flexibility and continuity of care • Identify key “advocates” or “clinical champions” (eg, doctor, outreach clinical nurse, social worker, psychologist, child life specialist) critical to gold-standard care for AYAs. • Maintain continuity of care with staff who know AYA and family well. • Tailor care to AYAs’ individual needs and concerns. • Due to strong relationships that may develop, AYAs may be more vulnerable than patients of other ages to become distressed by staff/attending rotations.
Communication issues	Effective communication • Present information about AYA diagnosis and treatments in a direct, age-appropriate, and comprehensible manner.^Citation69 • Investigate reliable, age-appropriate Web sources and online support groups. • Develop longitudinal relationships with AYAs to further learn about communication behaviors of their family and cultural influences on communication patterns.	Prognostic honesty • Model honest conversations with AYAs around their illness.^Citation73 • Allow AYA adequate time to process their poor prognosis^Citation83 for greatest chance of resilience and “posttraumatic growth.” • Educate trainees working with team to plan future care with options for EOL care planning. • Support AYAs and their families to take control of the situation in whatever ways they find useful as a family. • Encourage AYA and family to communicate around EOL issues (eg, death/dying, last wishes) “just in case” the cure they hope for does not eventuate. • Being clear about prognosis may be particularly complex when an AYA patient is enrolled on a Phase 1 clinical trial involving “active” anticancer agents; such in cases, there may sometimes be the temptation for doctors to use language such as “our goal is to cure” or that the palliative treatment has a “curative intent.” • The use of the word “cure” may lead to misunderstandings, particularly if patients and families selectively focus on that term, rather than other contextual information surrounding it. • Phase 1 trials should be discussed and offered whenever possible. As even very unwell AYAs can show great altruism, and value the opportunity to participate in research, Phase 1 studies may be framed as a means of “giving back” or contributing to medical science so that future generations of AYAs with cancer may benefit.^Citation111,Citation112 Given that even adult patients can perceive pressure from family members to participate in such trials,^Citation118 in younger, more vulnerable AYAs, it is critical that this decision-making process allows the AYA to discuss their options in detail with a clinician without their parents/family present, if desired.	Introducing palliative care as an added support • Introduce the palliative team in a way that implies neither giving up on nor abandoning the patient, but simply adding support.^Citation115 • Words such as “We will continue to do everything possible to help treat your cancer. Our palliative care colleagues can work with us to make sure your symptoms are under good control and that you and your family are getting an extra layer of support” can be useful in communicating with AYAs.^Citation116 • Conceptualize palliative care as a consistent, congruent part of the care paradigm, in order that transition to comfort care can have a gradual and intuitive presence rather than a jolting introduction.^Citation117
	Decision-making/disclosure	Decision-making/disclosure	Decision-making/disclosure
	Incorporate EOL conversations as disease progresses to facilitate preparedness. Include training in early advanced care planning (supporting conversations important to AYA patients,^Citation116 such as place of death^Citation75 and how the patient wishes to be remembered^Citation73).	Even when there is reassuring disease response to therapy or “good news” on imaging, encourage trainees to consider the “what ifs” with AYA patients to ensure goal-directed conversations are integrated early. Familiarize trainees with the social dimensions unique to each family for placement of AYA EOL care needs in the wider evidence base of palliative science.	Allow the AYA patient to decide who is or is not present for decision-making conversations. Check in with AYA patients to determine best timing for decision-making conversations; provide advance warning early in the conversation that the content may be heavy or hard, and receive permission from the AYA patient to proceed with conversation at that time. Ensure decisions and anticipated outcomes from decision options are communicated in a clear, honest, and compassionate manner. Present treatment options allowing sufficient opportunity for AYAs to express individual preferences for continued treatment or advance care planning.
Managing physical	Symptom management	Coping with loss	Assessing and managing psychological distress
symptoms and psychological distress	To respect the request of AYAs for transparency and information sharing,^Citation119 trainees should be well informed about each medication and its potential side effects in order to ensure clear communication before adjusting medications. The trainee should be familiar with validated symptom reporting scales and skilled in recognizing symptoms.	• Insufficient preparation, training, and competence in physical and psychosocial symptom management and communication skills can negatively affect the way providers manage a patient’s death.	The prevalence of psychological distress among AYAs with cancer varies over time after diagnosis but not by the type of cancer or the prognosis.^Citation120 AYAs may feel burdened by the emotional responses of friends and family members, and those who have a family of their own may feel guilty about how disruptive and psychologically challenging the diagnosis can be for their partner or children. AYAs may also have a lower “mental health literacy” relative to older adults - that is, a less sophisticated understanding of types of psychological distress and how to recognize this in themselves and others.^Citation121 Consequently, it may be helpful to talk to the young person about the different types of distress common across the cancer trajectory, including within the EOL phase, such as anticipatory grief, separation anxiety, social/peer concerns, and worry about family and friends dealing with their death. AYAs’ developmentally normal concern around peers and body image may also lead to concerns around their physical appearance as their disease progresses and after death. The use of age-appropriate advance care planning guides can assist the AYA by providing a very specific, concrete “scaffolding” in which to discuss EOL concerns.^Citation74

Abbreviations: AYA, adolescent and young adult; EOL, end of life.

Table 4 Learner goals and objectives for an AYA palliative care cancer rotation

Goals	Objectives
Development	Describe the typical sequence of events in cognitive and psychosocial development from early adolescence through young adulthood Describe physiologic changes normal for this population with recognition of developmental delay or early maturity Recognize discordant timing and tempo of psychosocial development (including formation of identity) secondary to cancer Describe protective factors that promote AYA development and describe risk factors for potential delay in AYA development Understand the normal range of AYA stress and the additional stress chronic illness imposes evaluate the impact of cancer on developmental goals
Decision-making and disclosure	Support the AYA in discovery of his/her core values and cultivate insight into self-awareness for AYA and family Present options, consequences of options, and how personal/family values may be enabled in choices Consider the ethical principles involved in decision-making and disclosure Investigate how different cultural or religious backgrounds may impact decision-making or disclosure Determine AYA patient’s decisional control preference (keep, share, defer) and preferences for inclusion in decision-making conversations (self, parents, peers, siblings, certain clinicians, team members) Provide opportunities for decision-making, beginning with simple choices toward greater complexity encourage family to enable and support AYA decision-making Host advanced care planning meeting with the adolescent and his/her chosen proxy Support the AYA in discovery of his/her core values, and cultivate insight into self-awareness for AYA and family
Symptom management	Assess for nausea and pain with plan for monitoring trends in medication use Assess level of sedation Screen for sleep disorders such as insomnia or bad dreams that may be indicative of underlying emotional/existential distress Provide AYA and family with clear explanation of medication options and potential side effects as well as drug-alcohol interactions Communicate any medication changes with AYA
Effective communication	Learn about AYA’s information and communication preferences, and discuss role for communication proxy Provide developmentally informed, direct, honest, compassionate communication approach Provide explanation of confidentiality, and ask for permission to share information with family members prior to sharing information Promote communication between AYA and his/her support network to the preferences of the AYA Discuss supportive goals for adherence and supportive needs and resources for enablement of treatment adherence and appointment attendance
Psychosocial issues	Assess factors in AYA’s home, school, religious center, and community that are associated with potentially helpful or harmful outcomes Inquire about AYA and family school/vocational trajectories Discuss with AYA the support available as structural models (social networks) and functional models (perception of quality of relationships) Monitor changes in social environment, and assess these changes within the context of the AYA’s strengths and vulnerabilities Provide family members with information about psychosocial support and counseling
Supportive care	Provide AYAs with anticipatory guidance regarding nutrition and physical activity Provide and incorporate family support for balanced nutrition and physical activity. Ensure nutritional advice and physical activity guidance are shared with the AYA and their family. Inquire about preferences for complemenary and alternative medicine Ask about drug and alcohol use, and provide appropriate counseling and referral as needed
Existential	Inquire about spiritual or religious beliefs in a patient-sensitive manner Refer AYAs who express existential struggle to resources or activities relevant to the AYA’s personal preferences
Peer support	Maintain a list of AYA online and in-person support groups and recreational programs Evaluate changes in peer support, and offer ways to maintain healthy relationships
Mental health	Screen for depression, anxiety, and suicide risk with appropriate management plans for AYA with mental health problems and mental health referral Incorporate inquiries about sadness and fear into normal conversations with AYAs
Reproductive health	Discuss intimacy, sexual development, and sexual identity Discuss ways to be intimate aside from sexual intercourse Inquire about behaviors associated with the risk of sexually transmitted diseases, and provide patients with health guidance regarding sexual decision-making Consider topics of fertility, contraception, and adoption, and issues related to sexual dysfunction
Genetic	Familiarize with resources on constitutional genetic syndromes and inherited cancer risk
Financial	Link to financial resources and legal resources/advocates for coverage for AYAs, as needed Refer to transportation assistance programs, as needed Familiarize with health insurance policy coverage, and recognize gaps in coverage Learn about the transition for AYAs to separate insurance policy from parental policy Investigate the financial aspects of hospice qualification and enrollment
Multidisciplinary care context	Explain the professional role of each palliative care team member Attend consultation with a team member from each field to learn more about the perspective of that field Make referrals to team members, and learn about the referral process/outcome
Therapeutic alliance	Express value of AYA in all interactions and respect the AYA’s dignity Strive to support meeting important goals as defined by the AYA Help AYA’s family and friends respect AYA’s autonomy while remaining a supportive network Empower AYA with skills to effectively communicate their autonomy, wants, and needs with their family and friends

Abbreviation: AYA, adolescent and young adult.

Table 5 Guide for ongoing honest prognostic communication with adolescents and young adults

Prognostic discussions	When, How, With Whom
Building therapeutic alliance	When?
	Therapeutic relationships are built on trust. Start today by setting the ground rules, defining your roles, and establishing your commitment to honesty. How? Examples • There will be times during the course of your cancer treatment that we will have to discuss some difficult things. • We will need to talk about treatment options. we may need to talk about changes in your condition. Your input is important to me. • If you don’t understand something, I am relying on you to teach me how to help you better understand. • I will be honest with you and tell you as much as you want to know. With Whom? Give the AYA choices around the decision-making process, and let them know that there can be flexibility according to how they feel, and the decision at hand. • Some young people tell us that they like to be involved in all decisions, while some young people prefer someone else to decide things for them. How you feel might also depend on the decision: for example, you might like to make the final decision about whether to take antinausea medication, but you might prefer Mom/Dad to help you decide about continuing treatment. Involve support person • Who would you like to have included in ongoing conversations about your treatment and care? • [If over 18]: Even though legally you will be making this decision, it is important to us that we include important support people in your life in the process according to your wishes (eg, partner, spouse, best friend, parent) If relevant, address the issue of legal decision-making status. • In [country, eg, USA] young people are not legally able to take responsibility for medical decisions until they are 18 years. So we need to include your parents/caregivers in these important medical decisions by law until then. However, it is still really important to us that you have a say in these decisions, and that you are comfortable with the options we are talking about. I want you to let me know if you want to discuss the reasons behind a particular decision more at any point. • When you are X age, we will need to [reconsent/revisit these discussions or decisions] to make sure you are still in full agreement with this.
Disease progression	When? Each time there is no response to prescribed therapy, it is important to communicate disease progression honestly and in a manner that is timely and understandable. How? • Your latest scan (test results) shows that your cancer has continued to spread. There is another option we can try that may still be effective in curing your disease. I would like to explain the potential benefits and the potential risks that may happen with this next treatment (Phase II clinical trial, procedure, surgery, etc). With Whom? Prior to discussions, verify AYA’s preference for involving support person(s).
Palliative care options	When? Introduce palliative care with diagnosis of a life-threatening disease, such as cancer. How? • We have a great team of experts who will help us manage any symptoms you may be experiencing as you go through your cancer treatment. We will work together to make sure your pain and other symptoms are under control. The palliative care team is also very helpful in addressing some of your fears or concerns that are a normal part of having a life-threatening diagnosis such as cancer. We consult with them at diagnosis, and they are an important ongoing part of the team. With Whom? Arrange for consult with palliative care team.
Advance care planning	When? Time points when the AYA’s wishes and goals are discussed. These conversations are best had when the patient is relatively stable and not in a state of crisis.^Citation104,Citation105 How? “While we will continue to provide treatments that we hope will be effective against your disease, we have learned from other people your age that not suggesting that you give some thought to some difficult issues early on is irresponsible of us. For example, do you know who you would like to make medical decisions for you if you became very ill and were not able to do so on your own?” In fact, people your age helped create a guide called Voicing My CHOiCES so that they could put down on paper things that are important to them. If you would like, I can show you what the document looks like to see if it is something that might be useful to you.” Conversations should be tailored to the needs of the individual AYA and family.^Citation104 With Whom? Whom ever the AYA chooses to participate in decision-making.
Processing Grief and Emotions or Existential and Spiritual Struggles/ Concerns	When? Monitor during active treatment and as disease progresses. How? • I would like to know how you are doing emotionally. If at any time you feel uncomfortable or you don’t want to talk about these things, just say, “I don’t want to talk about it” - and we will move on. • What sorts of things are weighing heavily on your mind right now? • What are some of your greatest fears? • How are you sleeping at night? Do your worries or fears interrupt your sleep? Are you having bad dreams? • Who is the person you feel most comfortable talking to about your hopes, your fears, or your struggles? • What spiritual or cultural beliefs have helped you in the past? With Whom? Arrange for psychosocial or spiritual support as needed. • Consult with social worker, clinical psychologist, chaplain, spiritual care service, art therapist, or music therapist. Verify support person(s) AYA wants involved in discussions. • Processing all this information is difficult to do alone. Would you like to set up a time when we can involve your parent(s) or spouse in some of the conversations?
Goals – Hopes – Dreams	When? Throughout active treatment and as disease progresses How? • What things would you like to do together with your family or friends? • Are there certain events you are looking forward to, or are concerned your illness may get in the way of you participating in? With Whom? • AYA and involve others the AYA chooses.
Legacy – memory-making	When? Monitor during active treatment and as disease progresses. How? • What are some of your best memories as a child? As a teenager? What about during this past year? • If the world could know one thing about you, what would you want that to be? • Many AYAs have shared that they wanted something positive to come from their suffering – for example, a way to help others who have the same disease as they have. Have you had similar thoughts as these? With Whom? • Consult with social work, psychology, music therapy, art therapy, child life specialist (at pediatric hospitals), spiritual counselors.
Hospice – Phase I Clinical Trials	When? Introduce when all curative options are exhausted. Some palliative at-home services are available while participating in Phase 1 clinical trials. How? • Despite our best efforts, your cancer has continued to advance. We are no longer able to cure your disease. However, we have other options that may slow down your cancer (eg, palliative chemo). There is also the option of hospice (or other at-home support teams). These experts focus on supporting you at home so that you can continue to do the things you want to do each day for as long as possible. The third option would be a Phase I clinical trial (include discussion of risks and noncurative benefits). With Whom? Verify support person(s) AYA wants involved in discussions. • Arrange for consult with Phase 1 Clinical Trial Team or Consult with Hospice. • May wish to involve social worker to coordinate at-home services.

Abbreviation: AYA, adolescent and young adult.

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