Matching Treatments to Preferences: An update on palliative care in Delaware

1. MATCHING TREATMENTS TO
PATIENTS’ GOALS
An Update on Palliative Care in Delaware
Sheila Grant, BSN, RN, CHPN
Community Liaison
Heartland Hospice

2. DISCLOSURES
I work as a Community Liaison for Heartland
Hospice, Homecare & I.V.

3. OBJECTIVES
1. Participants will understand the difference between palliative care
and hospice and the current efforts to re-design hospice to break
down barriers to care.
2. Participants will be able to list the palliative care programs available
to Delaware patients in hospital, home care, and long-term-care
settings.
3. Participants will be able to explain the successes and the needs for
expansion and improvement in palliative care in Delaware.
4. Participants will know the benefits of the Delaware Medical Orders
for Life-Sustaining Treatment, where to download copies of the form,
and know how to use it in practice.

4. WHEN THE TIME COMES . . .
Most people say they want But 75% die in a
hospital or nursing home
to die at home
If you want to stay home, you need a plan.
Palliative care helps match treatments to preferences.
Source: Means to a Better End, Robert Wood Johnson Foundation, 2002.

5. TRAJECTORY OF
ADVANCED ILLNESS
WHAT DO COMMON
WAYS OF DYING
LOOK LIKE?

6. EMPOWERING PATIENT’S TREATMENT CHOICES—
INFORMED CONSENT = ACCURATE INFORMATION ABOUT
PROGNOSIS AND OPTIONS, INCLUDING PALLIATIVE CARE AND
HOSPICE.
Health System Efforts Legislative Efforts
CA, PA, WV
Launched initiatives to
improve communication
about prognosis and
treatments options between
doctors and patients.
NY
 Passed legislation
requiring physicians to
discuss palliative options
with terminally ill patients

7. Joint Commission—New Speak UP Initiative features Palliative Care—
jointcommission.org/speakup.aspx

8. JOINT COMMISSION HAS A NEW
CERTIFICATION PROGRAM

9. THE CONVERSATION
PROJECT.ORG

10. WHAT’S THE DIFFERENCE?
Palliative Care
•Provided by an interdisciplinary team of specialists
•Focused on quality of life
by relieving:
Hospice
Palliative care in the
•pain last 6 months of life,
•symptoms after curative
•stress of serious illness treatments stop
•Provided at any stage of an illness, along with
curative treatment
Palliative Care is provided “further upstream” from hospice.

11. HOSPICE & PALLIATIVE CARE
Same Different
 Patients  Timeframe
 Goals  Reimbursement method
 Knowledge base  Setting (maybe)
 Interdisciplinary
team

12. HOW DO HOSPICE & PALLIATIVE
CARE FIT TOGETHER IN THE
CONTINUUM OF CARE?
Hospice
Care
About 6 About 13 mos.
Period of living with illness mos.
Diagnosi Death
s

13. WHEN THE MEDICARE HOSPICE
BENEFIT WAS CREATED, BACK IN 1982,
 Eligibility requirements were put in place to limit
costs, not because they made sense, clinically.
1. 6 mo. Prognosis
2. No Curative Treatments allowed
 Didn’t foresee the explosion of eol care costs
 Small studies have found that hospice care does
not increase costs at end of life. (Aetna)
 ACA authorized demo projects for concurrent
care (no funding, yet).

15.  6-month prognosis requirement is clinically arbitrary and practically
difficult.
 Limiting hospice to patients who forego curative treatments creates an
artificial distinction and impedes enrollment and quality of care.
 Medicare’s unique Hospice eligibility criteria conflicts with efforts to
integrate care and align incentives across providers and settings.
 Suggestions:--Change the hospice eligibility criteria:
 Concurrent Care (Demonstration project passed, not funded)
 Eligibility based on need, not prognosis

16. RETHINKING HOSPICE
ELIGIBILITY CRITERIA
DAVID J. CASARETT, MD, MA
JAMA. 2011;305(10):1031-1032.
 3 problems with Medicare Eligibility
Criteria for Hospice:
1. They encourage late referrals + short
LOS
2. They are based on prognosis
(uncertain). Should be based on
NEEDS, like every other benefit.
3. They reduce access for some groups
(e.g. African Americans less likely to use
hospice.)

17. The “H-
Word”
“HOSPICE”
Be afraid. Be very afraid.

18. ↘

19. IT’S NOT AS BAD AS IT LOOKS--
 V.A. and Pediatric Hospitals
were not counted (M’care and
IHI data were used.)
 St. Francis Hospital’s
palliative care service missed
deadline for inclusion.
 Data did not account for
hospital size (CCHS counted
equal to Beebe)

21. Medicare AAHPM Medicare NBCHPN Medicare NBCHPN Medicare
Deaths Certified Deaths Certified Deaths Certified Deaths per
Physician per RN’s per APRN’s Certified
s Certified Certified APRN
Physicia RN
n
Delaware 1060 55 (65) 96 2 (4) 2,649
5 (8)
Hawaii 25 154 37 104 1 3848
(fewest
deaths
/certified
phys.)
Rhode 4 1,267 43 118 6 845
Island
(fewest
deaths
/certified
APRN)
Arizona 79 270 405 53 9 2,369
(fewest
deaths/

22. DELAWARE NOW HAS:
ABHPM’s = 8
ACHPN’s = 4
CHPN’s = 65
CHPLN’s= 10
CHPNA’s= 44
CHPCA’s= 3

23. HOSPICE & PALLIATIVE CARE BOARD-
CERTIFIED PHYSICIANS IN DELAWARE

24. WE ALSO HAVE 2 NEW PALLIATIVE
CARE FELLOWSHIP-TRAINED
PHYSICIANS IN DE
 Roshni Guerry, MD at Christiana Care Hospitalist Partners
 Demetris Platis, MD at St. Francis Hospital, Family Medicine
Dept.

25. TIM COUSOUNIS, PALLIATIVE CARE
CONSULTANT
 Hospitals will likely look to post-acute care
networks to assist in managing the care of
patients at-risk for re-hospitalization.
 Palliative care. . . may be provided under
many health plan benefits, including, of
course,
 The hospice benefit,
 The home health benefit, and
 Medicare Part B, for physician outpatient
or home-based visit coverage.
 Tim Cousounis’ Blog palliativemedicine.blogspot.com

26. PALLIATIVE CARE PROVIDERS IN
DE  Dr. Goodill, Dr. Roshni Guerry, Dr. Linsey O’Donnell and NP’s Shirley
Christiana Care Health Brogley, MariPat Wellz-Bosna, Jo Melson, Brenda Eastham, Chap. Pat
System Malcolm
 Dr. Theresa Gillis has an outpt. P.C. practice as part of the Helen Graham
A.I. DuPont Children’s Center.
Hospital
Wilmington V.A. Med.  Full-time medical director, NP, SW, additional full and part-time physicians,
Ctr. volunteer chaplain. Inpatient, outpatient and home settings are covered.
St. Francis Hospital  Dr. Dihenkar, APRN’s Maria Ash, and Marie Sedlak-Lupone staff the VA
Program.
 Dr. Dan DePietropaolo and Cindy Jones, APRN provide palliative
Delaware Hospice consults.
 Dr. Dimitris Patris just finished a P.C. Fellowship
 Heartland Home Care
 Home & Community Based Palliative Care Consult Program (ACP & P.C.
in NC and Sussex Counties—Medicare B pays)
 Beebe Hospital
 Fragile Patient Program thru Home Care Service-pts. need not be eligible
for hospice to receive services.
 Bayhealth (Kent Gen.  Dr. Salvatore (pulmonologist) at Beebe has a small, palliative care
and Milford Mem.) practice.
 Plannning stages of forming a Palliative Care Team. They have offered

27. WE ALSO HAVE

28. What are we missing in DE?
Access to Palliative Care
• Palliative Care specialists in ALL hospitals
• Palliative Care outside the hospital (though home care or hospice
programs)
Quality Palliative Care
• Adequate numbers of board-certified
palliative specialists
• Better overall outcomes

29. NOT EVERYONE WITH ADVANCED
ILLNESS HAS ACCESS TO NEEDS (OR
NEEDS) A PALLIATIVE SPECIALIST
Primary Palliative Specialist
Care Palliative Care
All health care providers should Certified and fellowship-trained
have a basic level of expertise providers will serve patients
with greater needs

30. PALLIATIVE CARE IS NOT NEW
So why are we
talking about it
now?
New RESEARCH!
New CLINICAL
GUIDELINES!

31. EARLY PALLIATIVE CARE FOR PATIENTS WITH NON-SMALL CELL
METASTATIC LUNG CANCER
 RCT [standard oncologic care OR standard oncologic care +
palliative care]
 P.C. group showed significant improvements in:
 quality of life
 mood
AND
 Less aggressive care at the end of life
 Longer survival (11.6 mo. vs. 8.9 mo.)
—n engl j med 363;8 nejm.org august 19, 2010

32. EARLY PALLIATIVE CARE

33. PROVISIONAL
CLINICAL OPINION
 Recent Data: Seven published RCTs form the basis of this
PCO.
 It is the Panel’s expert consensus that combined standard
oncology care and palliative care should be considered early in
the course of illness for any patient with metastatic cancer and/or
high symptom burden.

35. SPIKES—A SIX-STEP PROTOCOL FOR
DELIVERING BAD NEWS
Setting—Privacy, include sig. others, sit down, manage time,
make a connection)
Perception—“What have you been told about your medical
situation so far?”, ASK-TELL-ASK
Invitation—Ask the patient if they would like to know more
about their illness, their prognosis, their treatment options. ASK-
TELL-ASK.

36. SPIKES, CONTINUED
Knowledge—Share information. Give a warning shot “I’m sorry to
say I have some bad news.” Unfortunately, the treatment is not working.”
“I wish things were different, but . . . “ Avoid excessive bluntness. Don’t
say “There’s nothing more we can do”. We can always adjust our plan of
care to meet new goals when prognosis changes.
Empathy—Respond to the patient’s emotion—anger, denial,
sadness, relief, etc. (“I can see this is upsetting for you”. “I was also
hoping for better results”, “I can tell you weren’t expecting to hear this.”)
If emotions are not expressed, ask more questions.
Strategy—Present treatment options, including palliative care, if
appropriate.

37. DELAWARE NOW HAS
A NEW EMS REGULATION IN PLACE
EMS Providers will
honor a new form
called Medical
Orders for Life
Sustaining Treatment
(or MOLST) to take
the place of the
PACD

38. OUR DE MOLST
Should be
printed on
purple cardstock
and looks like
this:

39. ADVANTAGES OF MOLST:
• Clear, Standardized Instructions
• Translates a patient’s Living Will into an Actionable
Medical Order
(Ideally patients will have both L.W. and MOLST)
• Portable—Follows pts. thru transitions of care
• Available On-line—No cost to the State for printing and distribution

41. ALL ADULTS SHOULD COMPLETE A LIVING
WILL AND HEALTH CARE POA
• MOLST is
recommended only
for people with
advanced illness or
frail elders who
want to give
instructions for their MOLST
care.

42. 11/11 Study* showed
94% overall consistency rate between
POLST orders and treatments given.
POLST/MOLST Works!
*Study included 90 nursing facilities in OR, WI, WV

43. WHY? BECAUSE FAMILIES SUFFER WHEN
PATIENTS HAVE A “DIFFICULT DEATH”
Many surrogate decision
makers
experience symptoms for up to
20 years or more after a death
• Avoidance
• Intrusion
• Hyper-arousal
• PTSD!

44. PLACE OF DEATH: CORRELATION WITH QUALITY OF
LIFE OF PATIENTS WITH CANCER AND PREDICTORS
OF BEREAVED CAREGIVERS’ MENTAL HEALTH
 Patients with cancer who die in a hospital or ICU
have worse QoL compared with those who die
at home,
 Their bereaved caregivers are at risk for
developing psychiatric illness.
 Interventions aimed at terminal
hospitalizations or o hospice
utilization may enhance patients' QoL at the
EOL and minimize bereavement-related
distress.
 JCO October 10, 2010 vol. 28no. 29 4457-4464

45. ADVANCE CARE PLANNING AND
POLST/MOLST ARE AN IMPORTANT PART
OF :
• Coordinated care Look at the examples:
delivery
• Geisinger (PA)
• Smooth Care • Guthrie (PA)
Transitions • Kaiser
• Gunderson
• Accountable Care
• Cleveland Clinic
Organizations • Grand Junction, CO

46. WITHOUT WRITTEN INSTRUCTIONS,
IT’S HARD TO KNOW WHAT A PATIENT
WANTS

47. NATIONAL COALITION FOR
HOSPICE AND PALLIATIVE
CARE
The NCHPC is designed to
focus on common organizational
goals.

48. LEGISLATIVE UPDATE: SUPPORT PCHETA
Provides funding for :
 Palliative Care and Hospice Education
Centers
 Interdisciplinary career incentive
awards (APRN’s, SW’s, Pharm., Psych.
Pursuing advanced degrees in p.c.)
 Academic Career Awards (for those
who teach p.c.)

49. LEARN THE LATEST NEWS FROM
EXPERTS IN THE FIELD
Increased focus on hospice Is it time for another lawsuit?
reform Advocating to change the Medicare
Hospice Benefit eligibility
requirements

50. WIN PROBAILITY: The expected chance that a team will win a game at a particular
moment in time, given the situation it faces. --from ESPN Magazine via
Pallimed.org

51. AS YOU THINK ABOUT RESEARCH,
POLICY, REGULATIONS, PAYORS,
CERTIFICATIONS,
Don’t
forget:
Keep your
focus on
patients
and
families.

52. DO NOT RESUSCITATE BY BRENDA
BUTKA, MD
VANDERBILT UNIV. SCHOOL OF MEDICINE, PUBLISHED IN JAMA 10/24/12
I can say your father is dying . . . I can say do not confuse
I can say love does not conquer all . . resuscitation
.
blind hope is not a recipe for
with resurrection, although
success. . . neither works particularly well
underdogs usually lose . . .
death is not the worst thing, it is just You look like you are drowning
the last thing
Pallid and slow in
But for you that is not true. . . .
The waiting room’s underwater
I can say we should not do this light
He will never be the same.
I can say So, Tell me
If it were my father. Tell me again.
Tell me about your father.

53. WE NEED TO PROVIDE BETTER CARE
FOR PEOPLE WITH ADVANCED
ILLNESS
Palliative Care is making it happen