Transcript Pediatric Palliative Care in the Neurology Population

Pediatric Palliative Care in the
Neurology Population
Carey McDonald, BSN, MSN, CPNP-AC
Tisha Longo, LMSW
Maie El-Sourady, MD
Objectives
- Describe pediatric palliative care and
current status Vanderbilt Children’s
Hospital
- Tips for having difficult discussions with
families
- Resources for neurology patients facing lifelimiting illness (Hospice Care and POST
form)
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)
Problems Patients Face…
Biggest Concerns for Patients with Serious Illness
Doctors might not provide all the treatment options or choices available.
Doctors might not talk and share information with each other.
Doctors might not choose the best treatment option for me.
I will feel unsure about what to do after my hospitalization or appointment.
I do not have enough control over my treatment options.
Doctors don’t spend enough time talking with and listening to me and my family.
The field of palliative care has grown as a response to these concerns.
CAPC, et al. (2011)
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)
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
Pediatric Palliative Care:
Definition Concepts
Life Prolonging
Hospice Care
Care
Palliative Care
• Patients receive Palliative Care throughout
the continuum of illness.
Meier, D. (2009)
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.
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).
Disease Trajectories in Children
Malignancy
Cystic Fibrosis
Neurodegenerative Disease
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
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?
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
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
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
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)
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
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”
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
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
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
[email protected]
[email protected]
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-forpalliative-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.