Presentation on palliative care given at the Caregiver's Conference for the Cystic Fibrosis Affiliate and Satellite Sites at Riley Children's Hospital.

1. Palliative Care in Cystic Fibrosis
Mike Aref, MD, PhD, FACP
Palliative Medicine Service, IU Health University Hospital
Assistant Professor of Clinical Medicine, Indiana University School of
Medicine

2. Agenda
• Introduction
• Palliative Care
• Hospice
• Primary Palliative Care
• Goals of Care
• Symptom Management

3. Disclosure of Financial Relationships and
Conflicts of Interest
None

4. Agenda
• Introduction
• Palliative Care
• Hospice
• Primary Palliative Care
• Goals of Care
• Symptom Management

5. DEATH HAS NO RESPECT FOR AGE

6. Median Death Age in Cystic Fibrosis
BMJ 2011;343:d4662

7. For select candidates, lung transplantation
improves survival and quality of life.
The five-year survival post-transplant is about
50%
www.eperc.mcw.edu/EPERC/FastFactsIndex/265-Palliative-Care-for-Patien

8. SUFFERING DOESN’T RESPECT AGE EITHER*

9. Symptoms
• Cough
• Dyspnea
• Fatigue
• Pain
worsen as lung
disease
progresses
www.eperc.mcw.edu/EPERC/FastFactsIndex/265-Palliative-Care-for-Patien
}

10. Pain
Pediatrics 1996; 98(4):741 -747

11. DECREASE SUPPORT INCREASE MORTALITY

12. Socioeconomics and Mortality
BMJ 2011;343:d4662

13. Agenda
• Introduction
• Palliative Care
• Hospice
• Primary Palliative Care
• Goals of Care
• Symptom Management

14. Palliative Care
•The area of medicine that deals with alleviating
the physical, mental, spiritual and familial
suffering of patients with chronic, progressive
illness.
•Symptom management and setting goals of
care in “life-limiting” illness.
•Palliative care is concerned with three things:
the quality of life, the value of life, and the
meaning of life.
•“Sufferology”.
Doyle D, Oxford Textbook of Palliative Medicine, 3 ed.

15. Choosing Wisely
•Don’t delay palliative care for a patient
with serious illness who has physical,
psychological, social or spiritual distress
because they are pursuing disease-directed
treatment.
http://www.choosingwisely.org/doctor-patient-lists/american-academy-of-hospice-palliative-medicine/

16. Evolving Model of Palliative Care
Cure/Life-prolonging
Intent
Palliative/
Comfort Intent
Bereavement
“Active
Treatment”
Palliative
Care
DEATH
DEATH
http://www.nationalconsensusproject.org

17. Evolving Model of Palliative Care
Follow-up
Psychological and Spiritual Support
DEATH
Disease-
Focused Care
Comfort-
Focused Care
http://www.nationalconsensusproject.org

18. Victoria Classification of Palliative Care
Type Goal Investigations Treatments Setting
Active
(Blue)
To improve quality of life with possible
prolongation of life by modification of
underlying disease(s). Ex: Pt. who has
potentially resectable pancreatic carcinoma.
May require immediate symptom control or
need guidance in setting future goals.
Active (eg, biopsy,
invasive imaging,
screenings)
Surgery, chemotherapy,
radiation therapy, aggressive
antibiotic use,
Active treatment of
complications (intubation,
surgery)
In-patient facilities,
including critical
care units; Active
office follow-up
Comfort
(Green)
Symptom relief without modification of
disease, usually indicated in terminally ill
patients. Ex. Pt. who has unresectable
pancreatic carcinoma, no longer a candidate
for or no longer desires chemo or radiation
therapy.
Minimal (eg, chest
radiograph to rule out
symptomatic effusion,
serum calcium level to
determine response
to bisphosphonate
therapy)
Opioids, major tranquilizers,
anxiolytics, steroids, short-term
cognitive and behavioral
therapies, spiritual support,
grief counseling, noninvasive
treatment for complications
Home or homelike
environment
Brief in-patient or
respite care
admissions for
symptom relief and
respite for family
Urgent
(Yellow)
Rapid relief of overwhelming symptoms,
mandatory if death is imminent. Shortened
life may occur, but is not the intention of
treatment (this must be clearly understood
by patient or proxy). Ex. Patient who has
advanced pancreatic carcinoma reporting
uncontrolled pain (8 on a scale of 10),
despite opioid therapy.
Only if absolutely
necessary to guide
immediate symptom
control
Pharmacotherapy for pain,
delirium, anxiety. Usually given
intravenously or
subcutaneously and in doses
much higher than most
physicians are accustomed to
using.
Deliberate sedation may need
to be used and may need to be
continued until time of death.
In-patient or home
with continuous
professional support
and supervision
08/27/14 18

19. Agenda
• Introduction
• Palliative Care
• Hospice
• Primary Palliative Care
• Goals of Care
• Symptom Management

20. Palliative Care and Hospice
Rosenberg, M et al, Clin Geriatr Med 2013; 29:1–29
Palliative Care
Symptom Management of Life Limiting Illness
End of Life Care/Hospice
Symptom Management and Comfort Care

21. Hospice and Palliative Care
• Hospice is for
patients who are
expected to die
within less than 6
months.
 Palliative care is for
patients who you
would not be
surprised if they die
within less than 6-12
months.

22. Hospice
 It's a service not a sentence (it's hospice not
house arrest).
 Hospice is a program, not a place.
 Patient's with an estimated life-span of less
than six months who are no longer candidates
for curative therapy are eligible for services.
 Patient's requiring active symptom
management, who are too tenuous to move, or
are actively dying may be eligible for in-patient
hospice. In these patients death is expected
within 5 days.

23. Agenda
• Introduction
• Palliative Care
• Hospice
• Primary Palliative Care
• Goals of Care
• Symptom Management

24. Primary Palliative Care Assessment
 Pain/Symptom Assessment
– Are there distressing physical or psychological symptoms?
 Social/Spiritual Assessment
– Are there significant social or spiritual concerns affecting daily life?
 Understanding of illness/prognosis and treatment options
– Does the patient/family/surrogate understand the current illness,
prognostic trajectory, and treatment options?
 Identification of patient-centered goals of care
– What are the goals for care, as identified by the
patient/family/surrogate?
– Are treatment options matched to informed patient-centered goals?
– Has the patient participated in an advance care planning process?
– Has the patient completed an advance care planning document?
 Transition of care post-discharge
– What are the key considerations for a safe and sustainable transition
from one setting to another?
Weissman, DE, Archives in Internal Medicine 1997;157:733–737
Weissman, DE et al, Journal of Palliative Medicine 2011; 14(1):1-8

25. Palliative Perception
 The patient:
– is not a candidate for curative therapy
– has a life-limiting illness and chosen not to have life prolonging
therapy
– has uncontrolled symptoms
– has uncontrolled psychosocial or spiritual issues
– has been readmitted for the same diagnosis in last 30 days
– has prolonged length of stay without evidence of progress
– has Catch-22 criteria: the indicated treatment of one potentially
fatal problem is contraindicated by another
http://www.capc.org/tools-for-palliative-care-programs/clinical-tools/ Central Baptist Hospital Palliative Care Screening Tool

26. Agenda
• Introduction
• Palliative Care
• Hospice
• Primary Palliative Care
• Goals of Care
• Symptom Management

27. Hope for the best, plan for the worst.

28. What are you hoping for?
What worries you the most?
What gives you strength?

29. Communication is NOT inherent

30. It is impossible NOT to improve
• Critical Care Communications (C3) Course
– www.capc.org/palliative-care-professional-development/Training/c3-module-ipal-icu.pdf
• VitalTalk
– www.vitaltalk.org
• Find a Coach
– www.newyorker.com/magazine/2011/10/03/personal-best

31. Do-Not-Resuscitate not Do-Not-Treat!
•“DNR orders only preclude resuscitative
efforts in the event of cardiopulmonary
arrest and should not influence other
therapeutic interventions that may be
appropriate for the patient.”
JAMA. 1991;265(14):1868-1871.

32. www.indianapost.org

33. What’s a DNR?
DNR
• A: DNR
• B: Limited or Full
• “If you find 'em dead, leave
'em dead.”
DNR with comfort
measures
• A: DNR
• B: Comfort Measures
• “When they're dying,
dignity, peace, and comfort
we’re trying”

34. Agenda
• Introduction
• Palliative Care
• Hospice
• Primary Palliative Care
• Goals of Care
• Symptom Management

35. Curative and Palliative
J Palliat Med. 2012; 15(1):106-14

36. Total Symptoms
Pain
• Physical problems (multiple)
• Anxiety, anger and depression—
elements of psychological distress
• Interpersonal problems — social
issues, financial stress, family
tensions
• Nonacceptance or spiritual distress
Dyspnea
• Physical symptoms
• Psychological concerns
• Social impact
• Existential suffering
Curr Opin Support Palliat Care. 2008; 2(2):110-3

37. WHO Analgesic Ladder
Canadian Family Physician 2010; 56(6):514-517

38. Dyspnea Management
J Palliat Med. 2012; 15(1):106-14

39. Questions? Concerns? Comments?
THANK YOU