Download palliative care in the aya population

PALLIATIVE CARE IN THE AYA
POPULATION
Stephanie Nemmers, MSN, ARNP, CPNP
Nurse Practitioner
SHINE Pediatric & Perinatal Palliative Care
Blank Children’s Hospital / UnityPoint Health – Des Moines
On The Horizon of Oncology Nursing: Advancements in Cancer Care and Treatments 11/3/2016
Objectives
Following this presentation, the audience will be
able to:
• Define ‘Palliative Care’ and ‘AYA.’
• List three developmental considerations for the AYA
population.
• Describe the importance of Palliative Care in the AYA
population.
Palliative Care
• National Cancer Institute:
– “Palliative care is given throughout a patient’s experience
with cancer. It should begin at diagnosis and continue
through treatment, follow-up care, and the end of life.”
• World Health Organization:
– “…is the active total care of the (patient’s) body, mind, and
spirit, and also involves giving support to the family.”
• American Cancer Society:
– “…(palliative care) can help provide a better quality of life
for your child and family by focusing on relieving the pain,
symptoms, and stress associated with cancer and its
treatment. It can help you and family find your way.”
ACS: http://www.cancer.org/treatment/treatmentsandsideeffects/palliativecare/index Accessed Sept 2016
NCI: https://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet#q1 Accessed Sept 2016
WHO: who.int/cancer/palliative/definition/en/ Accessed Sept 2016
Palliative Care
• Life-threatening or Life-limiting condition
• Starts at diagnosis & continues throughout illness
• Services
–
–
–
–
–
–
Symptom management
Communication
Advance care planning
Goals of care
Care coordination
Additional layer of support
• Goal: Improve Quality of Life
• Consult team
• Across the continuum of care
Levine, D. R., et al. (2016). Integrating palliative care in pediatric oncology: Evidence for an evolving paradigm for comprehensive cancer care. J Natl Compr Canc Netw, 14:741–748.
Palliative Care
Old Concept
Palliative Care/
Hospice
Curative Care
New and Improved Concept
Curative Care
Palliative Care
Hospice
Bereavement
AYA Oncology
• Adolescent and Young Adult
• 15-39 yrs
• 70,000 AYA CA diagnoses/yr
– New dx every 7.5 mins
– 6x the rate of children
– Incidences > with age
– Leading cause of disease-related death
NCI: https://www.cancer.gov/research/progress/snapshots/adolescent-young-adult Accessed Sept 2016
Shaw, P. H., et al. (2015). Adolescent and young adult oncology in the United States: A specialty in its late adolescence. J Pediatr Hematol Oncol, 37(3): 161-169.
Smith, A. W., et al. (2016). Next steps for adolescent and young adult oncology workshop: An update on progress and recommendations for the future. Cancer, 122(7): 988-999.
AYA Oncology
NCI: https://www.cancer.gov/research/progress/snapshots/adolescent-young-adult Accessed Sept 2016
Smith, M.A., et al. (2014). Declining childhood and adolescent cancer mortality. Cancer, 120(16): 2497-2506.
AYA Oncology
• Less improvements
– Delays in dx
– Insurance coverage
– Same therapy
but different
outcomes
– Biological factors
– Poor accrual in
clinical trials 1/50
Bleyer, A. (2009). Adolescent and young adult cancers: Distinct biology, different therapy? CancerForum, 33(1).
Rosenberg, A. & Wolfe, J. (2013). Palliative care for adolescents and young adults with cancer. Clinical Oncology in Adolescents and Young Adults, 3: 41-48.
Research
• Significant
improvements in QOL
• Cost savings
• Patients that received
palliative care:
– Had better symptom control
– Chose less aggressive
care & chemo at EOL, but…
had longer survival
– Had less anxiety/depression
– Felt higher levels of hope
Developmental Considerations
Development:
– Individual identity
– Independence & Autonomy
Challenges with CA:
– Loss of independence
– Regression
– Delayed or missed milestones
– Disruption in social lives/isolation
– Educational/professional repercussions
– Loss of fertility
– Money/Insurance issues
– Alteration in appearance
– Physical consequences
Essig, S., et al. (2016). Improving communication in adolescent cancer care: A multiperspective study. Pediatr Blood Cancer; 63: 1423-1430.
Rosenberg, A. & Wolfe, J. (2013). Palliative care for adolescents and young adults with cancer. Clinical Oncology in Adolescents and Young Adults, 3: 41-48.
Wein, S., Pery, S., & Zer, A. (2010). Role of palliative care in adolescent and young adult oncology. Journal of Clinical Oncology, 28: 4819-4824.
Marriage
Children
Appearance
Denial
Acceptance
Employment
Fever
Neutropenia
Clinic
Appts
Care
Coordination
Nausea &
Vomiting
Hope
Anger
Mortality
Communication
Sadness
AYA Patient
Spirituality
Loneliness
Anxiety
Depression
Family
Friends
Transportation
Independence
School
Fertility
Finances
Dating
Pain
Significant
Other
Advance Care
Planning
Insurance
Isolation
Fear
Constipation
Diarrhea
11
Palliative Care in the AYA
Population
• Assessing the whole person and family
– Physical
• Symptom management
– Psychological and Emotional
• Communication
• Planning
– Social
• Relationships
• Coordination of services
• Insurance/Finances
– Spiritual and Cultural
• Legacy/Memory making
Donovan, D. A., et al. (2015). Palliative care in adolescents and young adults with cancer. Cancer Control, 22(4): 475-479.
Rosenberg, A. R. & Wolfe, J. (2013). Palliative care for adolescents and young adults. Clin Onc in Adol and Young Adults, 3: 41-48.
Physical
• Frequency
–
–
–
–
–
Fatigue: 57-86%
Reduced mobility 76%
Pain 73%
Poor appetite 71%
Dyspnea 6-21%
• Distressing symptoms
– Nonpharmacological interventions
– Integrative medicine
– Pharmacological interventions
Cheatle, M. D. & Savage, S. R. (2012). Informed consent in opioid therapy: A potential obligation and opportunity. J of Pain and Symptom Management, 44(1): 105-116.
Rosenberg, A. & Wolfe, J. (2013). Palliative care for adolescents and young adults with cancer. Clinical Oncology in Adolescents and Young Adults, 3: 41-48.
Wein, S., Pery, S., & Zer, A. (2010). Role of palliative care in adolescent and young adult oncology. Journal of Clinical Oncology, 28: 4819-4824.
Psychological & Emotional
• Distressing symptoms
–
–
–
–
Nonpharmacological interventions
Integrative medicine
Referrals
Pharmacological interventions
• Coping
– Avoid possible threats to life
– Maintain a positive attitude
– Maintain a normal life
stupidcancer.org, ulmanfund.org, cancercare.org
Essig, S., et al.. (2016). Improving communication in adolescent cancer care: A multiperspective study. Pediatr Blood Cancer; 63: 1423-1430.
Rosenberg, A. & Wolfe, J. (2013). Palliative care for adolescents and young adults with cancer. Clinical Oncology in Adolescents and Young Adults, 3: 41-48.
Wein, S., Pery, S., & Zer, A. (2010). Role of palliative care in adolescent and young adult oncology. Journal of Clinical Oncology, 28: 4819-4824.
Communication
• Pt/Family goals of care
– What is your understanding of…
– Based on your understanding of…
• What are you expecting from…
– What is most important to you?
– Hopes?
– Worries?
tellingkidsaboutcancer.com, cancer.net
Essig, S., et al. (2016). Improving communication in adolescent cancer care: A multiperspective study. Pediatr Blood Cancer; 63: 1423-1430.
Rosenberg, A. & Wolfe, J. (2013). Palliative care for adolescents and young adults with cancer. Clinical Oncology in Adolescents and Young Adults, 3: 41-48.
Advance Care Planning
•
•
•
What if…
Ask permission
Give opportunities
–
•
Not talking about it = Not thinking about it
Benefits
–
–
–
–
–
–
Have a voice
Give a gift
Legacy leaving
Helps families honor wishes
Facilitates growth and development
Build trust and hope
palliativedoctors.org, capc.org, hpna.org,
caringinfo.org, idph.iowa.gov/ipost, iowabar.org
Kassam, A., et al. (2015). Differences in end-of-life communication for children with advanced cancer who were referred to a palliative care team. Pediatr Blood Cancer, 62: 1409-1413.
Lyon, M., et al. (2013). Family centered advance care planning for teens with cancer. Jama pediatri, 167(5): 460-467.
Nyborn, J. A. et al. (2016). Don’t try to cover the sky with your hands. Journal of pall med, 19(6): 626-631.
Weiner, L., et al. (2012). Allowing adolescents and young adults to plan their end-of-life care. Pediatrics, 130(5): 897-905.
Advance Care Planning
• What are YOUR goals if you become very sick?
AYAs
Adults
Living Will
IPOST
DPOA
Fertility
• Start BEFORE treatment
• Explain the process
– Men: Sperm banking
– Women: Embryo, egg freezing,
Lupron
– Fertility sparing surgery
– Radiation shielding
• Referral
• Continue the conversation
myoncofertility.org oncofertility.northwestern.edu
vernaspurse.org
Flemming, F. (2012). Developing a community oncofertility program. Oncology Issues. May-June 20-28.
Shnorhavorian, M. et al. (2015). Fertility preservation, knowledge, counseling, and actions among adolescent and young adult patients with cancer: A population based study. Cancer. 121(19):
3499-3506.
Social
•
•
•
•
•
•
Practical issues
Home issues
Coordination of services
Community resources
Financial concerns
Relationships
Cancerandcareers.org, planet cancer.org,
15-40.org
Belpame, et al., (2016). The AYA director: A synthesizing concept to understand psychosocial experiences of adolescents and young adults with cancer. Cancer Nursing, 39(4): 292-302.
Rosenberg, A. R., et al. (2014). Contributors and inhibitors of resilience among adolescents and young adults with cancer. Journal of Adolescent and Young Adult Oncology, 3(4): 185-193.
Wein, S., Pery, S., & Zer, A. (2010). Role of palliative care in adolescent and young adult oncology. Journal of Clinical Oncology, 28: 4819-4824.
Insurance
• Limited access
– Lowest percentage of insurance coverage
• ACA Impact
– Delays in diagnosis
– Presentation with later stage
disease
– Least likely to have a
1-800-227-2345
‘usual place to go’
patientadvocate.org, panfoundation.org,
copays.org, criticalmass.org
Belpame, et al., (2016). The AYA director: A synthesizing concept to understand psychosocial experiences of adolescents and young adults with cancer. Cancer Nursing, 39(4): 292-302.
Rosenberg, A. R. et al. (2015). Insurance status and risk of cancer mortality among adolescents and young adults. Cancer, 121(8): 1168-71.
Spiritual & Cultural
• Belief System
– FICA
•
•
•
•
Faith, Belief, Meaning
Importance & Influence
Community
Address
• How would you describe
your family?
• Traditions & Cultural Considerations
• Legacy & Memory Making
Cotton, S. et al. (2006). Religion/spirituality and adolescent health outcomes: A review. Journal of Adolescent Health, 38(4): 472-480.
Rosenberg, A. & Wolfe, J. (2013). Palliative care for adolescents and young adults with cancer. Clinical Oncology in Adolescents and Young Adults, 3: 41-48.
Taylor, E. J., et al. (2015). Spirituality and spiritual care of adolescents and young adults with cancer. Semin Oncol Nurs, 31(3): 227-41.
The Future
• Survivorship-remission
– Long-term follow-up
– Screening to monitor and manage
• Reoccurrence
• Metastasis
• Late effects
• AYA & PC programs in IA
– UnityPoint, University of Iowa, & Mercy
– Blank/John Stoddard
• [email protected]
– UI Childrens/Peds Onc/Holden Cancer Center
• [email protected]
Kirch, R. et al. (2016). Advancing a comprehensive cancer care agenda for children and their families: Institute of medicine workshop highlights and next steps. CA Cancer J Clin, 1-10.
Rosenberg, A. & Wolfe, J. (2013). Palliative care for adolescents and young adults with cancer. Clinical Oncology in Adolescents and Young Adults, 3: 41-48.
Shaw, P. H., et al. (2015). Adolescent and young adult oncology in the United States: A specialty in its late adolescence. J Pediatr Hematol Oncol, 37(3): 161-169.
Clinical Pearls
• Establish and maintain a relationship
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–
–
–
–
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Be consistent
Take your time
Compromise. Compromise. Compromise.
Be flexible with firmness
Establish patient’s Goals of Care
Be honest
Use your IDT
• What do AYAs want?
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–
–
–
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To be recognized as an individual
To be supported in maintaining normalcy
To have a voice
To understand their condition
To be treated with respect, maintain hope, and feel supported
Belpame, et al., (2016). The AYA director: A synthesizing concept to understand psychosocial experiences of adolescents and young adults with cancer. Cancer Nursing, 39(4): 292-302.
Wein, S., Pery, S., & Zer, A. (2010). Role of Palliative Care in Adolescent and Young Adult Oncology. Journal of Clinical Oncology, 28: 4819-4824.
Thank You!
Stephanie Nemmers, MSN, ARNP, CPNP
Nurse Practitioner
SHINE Pediatric & Perinatal Palliative Care
515-241-5750
[email protected]
blankchildrens.org/shine