Palliative care public - 4-15v2 curtis

www.uwpalliativecarecenter.com
Palliative Care and Advance Care Planning:
What are they and what do you need to know
about them?
J. Randall Curtis, MD, MPH
Director, Cambia Palliative Care Center of
Excellence
Harborview Medical Center, University of Washington

Disclosures and Funding
• Disclosures
–No financial conflict of interest
• Funding

Outline: Four Questions
• What is palliative care?
• What are advance directives and
advance care planning?
• How can we improve communication
about palliative care?
• What can you do?

Definition of Palliative
Care
Specialized care for people with serious
illnesses… focused on providing patients with relief
from the symptoms, and stress of a serious illness -
whatever the diagnosis.
The goal is to improve quality of life for both the
patient and family… provided by a team 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.
Center to Advance Palliative Care 2011

Understanding the Words
• Palliative care:
Improving quality of life
for patients with
serious illness
• End-of-life care: For
those who are entering
the last phase of life
• Hospice: A model for
delivery of end-of-life
care
Palliative Care
Hospice
Care
End-of-life
Care

What do Americans really think?
It is important patients and
families be educated about
palliative care options available to
them
How important is it that
palliative care be a top priority
for the health care system?
Regence Foundation/National Journal: n=1000 US Adults Age 18+;
2/2011

Provision of Palliative Care
• Primary palliative care
–Care provided by all clinicians caring
for patients with serious illness
• Specialty palliative care
–Care provided by palliative care
specialists

Temel, N Engl J Med, 2010; 363:763

Early PC Improves Quality of Life
38 v 16%.
p=0.01
17 v 4%.
p=0.04
Temel,
NEJM,
2010;
363:763
p=0.04

…Reduces Symptoms
p=0.01
p=0.04
Temel, NEJM, 2010363:763

…Improves Survival
Temel, N Engl J Med, 2010; 363:763
Standard care 8.9 months

Growth of PC Programs Nationally

Who should bring up a discussion
about palliative and end-of-life care?
• If you ask patients:
–Doctors should bring it up
• If you ask doctors:
–Patients should bring it up

What can people do to ensure they
receive the care they want?
• Advance Directives
– Living will
– Durable Power of Attorney for Health Care
– Physician Order for Life-sustaining
Treatments (POLST)
• Advance Care Planning
– Communication with family and doctors
about goals, values, and preferences

Reasons Advances Directives
Might Fail
• Difficulty predicting treatment decisions
that will need to be made
• Predicting future preferences limited by
– Adaptation to disability
– Changes in medical, emotional, social
context
• Patients often want family circumstances
and preferences considered

Randomized Trial of Advance Care
Planning Among 309 Elderly
• Hospitalized patients age >80
randomized to ACP by trained facilitator
vs. usual care
• 81% received ACP; 56% completed AD
– Facilitator used “Respecting Patient Choices”
– ACP in collaboration with physician
– Families present for 72%
– Sessions took median 60 minutes
Detering, Br Med J, 2010; 340:c1345

Randomized Trial of Advance Care
Planning Among 309 Elderly
Outcome (%) ACP Control p value
Death in ICU 0 14 0.03
PTSD in family 0 14 0.03
Depression in family 0 30 0.002
Anxiety in family 0 19 0.02
Satisfied with death 80 68 0.02
Satisfied with care 93 65 0.001
Detering, Br Med J, 2010; 340:c1345

Why advance directives failed and
advance care planning succeeds
• Advance directives focused on document
– Static piece of paper difficult to adapt to
real-life situation
– Often used without discussing
goals/values
• ACP offers discussion of contextual
goals and values
– Prepare patient and family to address
actual situation

Physician Skill at End-of-life Care
• To identify domains and specific
components of physician skill at
end-of-life care
– Patients with COPD, cancer, or AIDS
(n=79)
– Families who lost a loved one (n=20)
– Physicians, nurses, social workers (n=38)
Curtis, J Gen Intern Med, 2000;16:41

Conceptual Model of the Domains of
Physician Skill
Patient-Centered System
•Accessibility & continuity
•Team coordination
Cognitive
•Competence
•Pain and
symptom
management
Communication
Skills
•Communication
with patients
•Patient
education
•Inclusion of the
family
Affective
•Emotional
support
•Personalize
care
congratulate
Patient-
Centered
Values
•Attention to
patient
values
•Respect &
humility
•Support of
patient
decision
making
Curtis, J Gen Intern Med, 2000; 16:41

Communication With Patients:
Competencies
• Listens to patients
• Encourages questions from the patient
• Talks with patients in an honest and
straightforward way
• Gives bad news in a sensitive way
• Willing to talk about dying
• Sensitive to when patients are ready to
talk about death
Curtis, J Gen Intern Med, 2000;16:41

Back, Arch Intern Med 2007: 167;453
• Before-after study of a 4 day residential
workshop for oncology fellows
• 115 fellows from 62 institutions
• Evaluated on SP stations and acquired
– 5.4 “delivering bad news” skills
– 4.4 “transition to palliative care” skills
• Used word cancer when giving diagnosis
– Before: 16%; After: 54%

Oncotalk Results: Bad News
Back, Arch Intern Med 2007: 167;453

• 5 year RCT funded by NINR
• Interdisciplinary: Internal medicine
residents and NP students
• Two sites: UW and MUSC
• Eight half-day sessions
– Interactive seminar presentations
– Communication skills practice
Curtis, JAMA, 2013; 310:2271

Resident and Nurse Practitioner
Acquisition of Communication Skills
p<0.003 for all
Percent Completed
Residents: n=128
NP: n=17 Bays, J Palliat Med, 2013; epub

Patient and Family Outcomes
Curtis, JAMA, 2013; 310:2271

Post hoc Patient Subgroup
Analyses: QOC Score
Outpatient Poor Health Status
Curtis, JAMA, 2013; 310:2271

Conclusions of ICCS
• Intervention improved trainee skills
and self-assessment
• No improvement in patient ratings
–Untrained or unprompted patients and
families may not be sensitive raters
–Care provided by many clinicians
• Slight increase in PHQ symptoms
–Increased sense of sadness?
–Effect more prominent for R1s
Curtis, JAMA, 2013; 310:2271

What documents are available?
• Living will
• Durable Power of Attorney for
Healthcare
• POLST form
–Physician order for life-sustaining
treatment

What are advance directives
good for?
• As a tool for raising the discussion
• Good for some specific situations:
–If there is a specific treatment you
know you don’t want
–If you don’t want your legal next of kin
to be making decisions for you
• Advance directives can ease the
burden on your family

www.theconversationproject.org

Why have a Durable Power of
Attorney for Health Care?
Who decides if you can’t?
1.Court-appointed guardian
2.Durable power of attorney for
healthcare
3.Legal spouse
4.Adult children*
5.Parents*
6.Siblings*
*By consensus

What is a POLST form?
• Physician order for life-sustaining
treatments
• Applies in all settings
–Home, skilled nursing facility, hospital
• Important if you know you don’t
want life-sustaining treatments

Preparing for a Discussion About
End-of-life Care with Your Doctor
• Advance preparations
– Who should be there?
– What do you want to know?
– Bring in your documents
• Think about the things you might want
– Specific treatments you don’t want
– Aspects of health important to you:
independence, ability to communicate
– Consider adaptation

Having a Discussion About
End-of-life Care with Your Doctor
• If you don’t understand something,
ask your doctor to repeat it
–Ask for plain language
–Ask the doctor to slow down
• Ask if you can repeat what the
doctor has said in your own words
• Feel free to ask your doctor’s
opinion and recommendation

What To Discuss?
• Your personal goals for healthcare
• Your preferences for life support and CPR
– No life support or CPR at all
– Life support for short-term reversible situation
– Long-term life support without chance of coming
off
• Situations that you would not want life
support
– Unable to live independently
– Unable to communicate with loved ones
– Prolonged or indefinite life support in hospital

Focus on Goals before
Treatments
• What are the goals of care?
–Living independently
–Having a good quality of life
–Being able to communicate with
loved ones
• Goals more important than specific
treatments
–ICU treatment
–Cardiopulmonary resuscitation

Finishing a Discussion About
End-of-life Care
• Take a minute to think if you have
any questions
• Summarize discussion in your
own words
• Ask if you can meet to discuss
this again

Understanding the Discomfort
• Discomfort discussing dying is
universal
– Patient and family fears
– Clinician fears and concerns of
inadequacy
• Recognizing the discomfort can help us
work through it
– Consider talking about the discomfort
with the doctor

Cambia Palliative Care
Center of Excellence at UW
Mission:
•Improve palliative care received by
patients with serious illness and their
families and provide support to
clinicians
•Develop new knowledge and
educational and clinical resources to
improve palliative care regionally as well
as nationally and globally
http://www.uwpalliativecarecenter.com

How can you get involved?
• Interested in palliative care
–Join as a PCCE Member
–Help develop and use resources
• Care for patients with serious illness
–Education in palliative care
–Resources for patients/families
• Community involvement:
–Community Advisory Board
–Palliative Care Advancement Council

Summary
• Palliative care gaining momentum and
communication is a central piece
• Current quality of communication is often
poor, but improving
• Interventions for clinicians can clearly
improve communication
• Steps you can take
– Talk with your doctor and family
– Complete advance directives and discuss
• Cambia Palliative Care Center of Excellence

Palliative care public - 4-15v2 curtis

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