Pediatric Palliative Care in the Neurology Population

1. Pediatric Palliative Care in the Neurology Population Carey McDonald, BSN, MSN, CPNP-AC Tisha Longo, LMSW Maie El-Sourady, MD

2. Objectives Describe pediatric palliative care and current status Vanderbilt Children’s Hospital Tips for having difficult discussions with families Resources for neurology patients facing life-limiting illness (Hospice Care and POST form)

3. Physicians see palliative care as… • “Comfort care during one’s last few weeks or days of life to allow patients to pass in comfort and dignity.” • “Make a patient’s remainder of life comfortable and pleasant, without side effects of treatment, no aggressive measures are taken.” • “The overall goal is to keep a patient comfortable.” • “Comfort care. The goal is to keep a patient comfortable and out of intensive medical treatment. The goal is not to cure but to treat their symptoms.” • “Palliative Care is helping families to give them comfort and options for what to do at their loved one’s end of life.” • EDUCATION IS KEY. CAPC, et al. (2011)

4. Problems Patients Face… The field of palliative care has grown as a response to these concerns. CAPC, et al. (2011)

5. Pediatric Palliative Care Definition Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness - whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient's other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment. (CAPC 2011)

6. Pediatric Palliative Care:Definition “Our role is to have the complete and correct facts, to understand exactly what our patient and his family wishes, and do all our best to help them close the gap between what they want and what  can be achieved.” • Dr. Ashraf Mohamed

7. Life Prolonging Hospice Care Care Bereavement Palliative Care Pediatric Palliative Care:Definition Concepts • Patients receive Palliative Care throughout the continuum of illness. Meier, D. (2009)

8. Pediatric Palliative Care:Hospice versus Palliative Care • PALLIATIVE CARE is provided at the same time as life-prolonging treatment. No prognostic requirement, no need to choose between treatment approaches. • HOSPICE provides care for those patients whose prognosis is 6 months or less and who are not pursuing curative/ life prolonging treatment.

9. Neurology Case Examples • 7 yr old previously healthy male with traumatic brain injury (posterior fossa hemorrhage) s/p being hit by car, in PCCU intubated, EVD in place, aggressive ICP mgmt, intermittent seizures, consulted for recommendations on prognosis. Declining rapidly and parents request trach/ vent/ rehab. • 8 year old female with CPMR and history of HIE. Non-verbal and minimally interactive. Currently admitted for recurrent pneumonia, abdominal pain, and seizures. Mother feels pt’s condition can be cured if medical team finds out “what is wrong”. Requested to be part of care conference to discuss goals of care. • 18 month old congenital craniopharyngioma , was not expected to survive pregnancy but has been living at home and s/p discharge from hospice for extended prognosis, now in PCCU with hypothermia, bradycardia, and AMS, CT shows enlargement of craniopharyngioma. Consulted for goals of care discussions. • 15 year old boy with SMA Type II, progressively declining, trach/ vent dependent, communicates well via texting, s/p recent PCCU admission for respiratory virus and was not expected to survive that hospitalization. Returns to clinic for follow up and goals of care discussion (code status).

10. Disease Trajectories in Children Malignancy Cystic Fibrosis Neurodegenerative Disease

11. Pediatric Palliative Care:A “Typical” Consult • Introduce service • Initial meeting= “hear your story” • Take note of red flags (stressors, mentions of decisions to be made) • Obtain information the chart won’t tell you, what is important to the family • Physical exam, symptom management assessment • Follow up= respond to needs, discuss goals, symptom recommendations

12. Pediatric Palliative Care:Consult Questions • Use open-ended questions and LISTEN! • Tell me about your understanding of your illness. • Sounds like this has been a rough 24 hours, can you tell me about it? • What do you find most difficult about your child’s illness? • What are you hoping for? What is your expectation? • For unrealistic goals: I am worried that might not be possible. If that is not possible, what else would you hope for?

13. Difficult conversations: SPIKES Protocol • Examples: delivering bad news about prognosis, treatment decision-making, discussing code status • SPIKES PROTOCOL • S – Setting up the Interview • P – Assessing Patient Perception • I – Obtaining the Patient’s Invitation • K – Giving Knowledge • E – Addressing the Patient’s Emotions • S – Strategy and Summary Baile WF et al. The Oncologist 2000;5:302-311

14. Difficult conversations:SPIKES Protocol • Setting up the interview: Establish appropriate setting • Give yourself time and be prepared! • MUCH easier to bring up at a time when patient is not in “crisis” or declining • Sit at patient or parent level • Appropriate people present? • Acknowledge difficulty of topic/ conversation • Assessing Patient Perception • Ask patient/ family about their understanding of current status and what they expect or hope for long term outcome

15. Difficult Conversations:SPIKES Protocol • Obtaining Patient’s Invitation • Giving Knowledge: • Begin by asking questions like: • “Have you ever thought about what you would want if your/ your child’s illness were to take a turn for the worse or there were no more curative options?” (Patient/ family values) • “Have you ever thought of what kind of care you/ your child would want if your child got so sick that in order to stay alive, he/she would need to be in the ICU or on life support?” • “Can you tell me more about why you feel this way?” (Patient/ family values) • Once you better understand values, can make recommendation regarding treatment options (aggressive treatment/ CPR) and how that may or may not help reach patient/ family goals

16. Difficult conversations:SPIKES Protocol • Give professional opinion regarding appropriateness of resuscitation or other treatment so that patient can make informed decision • “I am worried that your illness has progressed to a point that you may not survive resuscitation.” (In advanced cancer, circulation and breathing stop because of the disease and “restarting” would not “fix” underlying problem.) • “Resuscitation would likely just make your death look and feel different.” • “You would not be likely to return to current quality of life.” Describe… • Want to make sure we perform procedures that will ultimately benefit, not harm Von Gunten (2001), AMA (2006)

17. Difficult Conversations:SPIKES Protocol • Address emotions. Acknowledge difficulty. • “Tell me more about how you are feeling.” • “I see this conversation makes you sad/ angry.” • “We are here for you.” • Give patient or family time to think about conversation before decision has to be made. • Summarize and establish a plan • Communicate to necessary family members and all medical teams involved

18. Palliative Care Tools: Hospice Care When to admit your patient? (2 physicians certify that patient has less than 6 months to live if the disease process were to follow its natural course, family goals in line with supporting natural death) Pediatrics may continue to receive support by their primary insurance for some life-prolonging therapies (tube feeds, medications, physical therapy) but this usually takes conversation and coordination with the hospice How to find a hospice in my patient’s area? www.nhpco.org “Find A Hospice”

20. Palliative Care Tools: POST Form Physician Orders for Scope of Treatment Most helpful for patients whose life expectancy is less than one year or who have a disease with a known trajectory Like any prescription or order Depends on a discussion with the patient Written in a standard format between health professionals Depends on the patient presenting it to the healthcare system in order for it to be implemented

21. Palliative Care Tools: POST Form A POST form is a TRANSLATION of patient wishes into medical language A physician order form It is written to be as clear as possible about medical interventions If there are caveats or instructions, the correct box should be chosen and then clarification should be placed on the “Other Instructions “ line There should be minimal ambiguity for the healthcare personnel that will be using it to implement treatment decisions for this patient

22. Palliative Care Team: We want to help! “Although the world is full of suffering, it is full also of the overcoming of it.” - Helen Keller Optimism 1903 Pediatric Palliative Care Office: 936-0859 PAL Center: 875-CARE Pager: 835-8350 carey.mcdonald@vanderbilt.edu tisha.longo@vanderbilt.edu

23. Pediatric Palliative Care:Resources American Medical Association (AMA). (2006) Discussing Code Status with Patients and Their Families. American Medical Association Journal of Ethics, Virtual Mentor, (8) 9, 559-563. Center to Advance Palliative Care, www.capc.org. Center to Advance Palliative Care (CAPC), American Cancer Society (ACS), American Cancer Society Cancer Action Network (ACS CAN). (2011). 2011 Public Opinion Research on Palliative Care: A Report Based on Research by Public Opinion Strategies. Retrieved from http://www.capc.org/tools-for-palliative-care-programs/marketing/public-opinion-research/2011-public-opinion-research-on-palliative-care.pdf. Feudtner, C., Tang, K.I., Hexem, K.I.,Friedrichsdorf, S.J., Osenga, K., Siden, H., Friebert, S.E., Hays, R.M., Dussel, V., & Wolfe, J. (2011). Pediatric Palliative Care Patients: A Prospective Multicenter Cohort Study. Pediatrics, 127 (6), 1-8. Friebert, S. (2009) NHPCO Facts and Figures: Pediatric Palliative and Hospice Care in America. Retrieved from http://www.nhpco.org/files/public/quality/Pediatric_Facts-Figures.pdf. Friebert, S. and Huff, S. (2009) NHPCO’s Pediatric Standards: A Key Step in Advancing Care in America’s Children. Retrieved from: http://www.nhpco.org/files/public/quality/Peds-Standards_article_NL-0209.pdf. Guyer, B., Hoyert, D., Martin, J., Ventura, S., MacDorman, M., & Strobino, D. (1999) Annual summary of vital statistics – 1998. Pediatrics, 104(6), 1229–1246. Meier, Diane E. (2009) Making the Case: 2010 [Power Point slides]. Retrieved from www.capc.org. Solomon, M.Z., Dokken, D.L., Fleischman, A.R., Heller, K., Levetown, M., Rushton, C.H., Sellers, D.E., Truog, R.D. for IPPC (2002). The initiative for pediatric palliative care (IPPC): Background and goals. Retrieved from: www.ippcweb.org. Temel, J.S., Greer, J.A., Muzikansky, A., Gallagher, E.R., Admane, S., Jackson, V.A., Dahlin, C.M., .P.N., Blinderman, C.D., Jacobsen, J., Pirl, W.F., Billings, J.A., M.D., & Lynch, T.J. (2010) Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer. N Engl J Med, 383, 733-742. Von Gunten, C.F. (2001) The Art of Oncology: When the Tumor is Not the Target, Discussing Code Status. Journal of Clinical Oncology, 19 (5), 1576-1581.