Presented at Primary Care Updated 2011, the Eastern Washington Spring CME event.

1. Discussing Goals of Care
and Advance Directives

2. Goals & Objectives
 Advance Directives: Why do we have
them and what do we do with them?
 Evidence Based Medicine for talking
about wishes at the end of life
 Resources for starting the conversation
 What do we do when it’s a child?
 Legal and Ethical Implications

3. Disclosures
 I do not have any financial disclosures to
declare
 Associations:
 Center for Practical Bioethics
 Family Medicine Spokane
 Kansas City Hospice and Palliative Medicine

5. Patient Self Determination
Act

6. “all of us, no matter what our age, gender, class,
nationality, religious tradition or not, hope to die well, in
reasonable comfort, ripe in years, compos mentis,
surrounded by our loved ones, at peace with ourselves
and the world, feeling we have lived a good life and
prepared to return to our ancestors.”
-Dorothy Austin in Rabbi Julia Neuberger’s book Dying Well.

8. Nothing is as certain as
Death and Taxes
April
16

10. • Where do I start?
• Who do I talk to?
• What is specific to my state?
• Now what do I do with it?
• Where do I put it?
• Who should have a copy?
• What if I’m traveling
• In another state?
• In another country?
• What if I want to change it?

11. Advance Directive:
Living Will
+
Durable Power of Attorney for
Health Care Decisions
= Advance Directive

12. The Case Against Advance
Directives
 Even among the 21% of patients that have
completed Advance Directives
 The document is unavailable at time of need
 Even if available, care preferences previously
recorded are often discarded when patients
approach death
○ Patient preferences change over time with decline
in health status
○ Physicians do a poor job at prognosis
○ Even when prognosis is suspected, Physicians
are reluctant to communicate prognosis
Winter L, et al. Ask a different question, get a different answer: why living wills are poor guides to care preference
at the end of life.” J Palliat Med. 2010 May;13(5):567-72.

15. Kansas/Missouri: TPOPP

17.  Aging With Dignity: Five Wishes
 Center for Practical Bioethics
 Caring Conversations
 Courageous Conversations
 What Y’all Gon’ Do With Me?
 Caring Connections
 Compassion and Choices
 National Resource Center on
Psychiatric Advanced Directives
 Project GRACE
 Life Support Preferences Questionnaire
(LSPQ)

22. Five Wishes
Summary of
patient wishes
for medical
record

23. Project GRACE:
Guidelines for
Resuscitation
And
Care at
End of Life

24. Washington
State DSHS
Form
By Caring
Connections
(NHPCO)

26. Advanced Directive tools created
specifically for kids/teens and young adults
 5 Wishes: My Wishes
 My Voice, My Choice
 Caring Conversations for Young Adults

28.  Talk about it early, same as with adults:
at the time of diagnosis
 Rules of engagement: Candor,
Respect, Collaboration, and Honesty
 Figure out who they are and what’s
important to them
 Ask what’s worrying them
Clark and Liemgruber, AAHPM 2012 Conference, Denver OMG, RUS? Talking with Teens about Dying

29. Evidence Based Medicine for Directing and
teaching a Family Meeting and Discussing
Code Status

30. The Case of Mrs. R
 POLST: DNR/DNI
 Comes to ER with Hypoxia, SOA, has End
Stage COPD.
 Talking with one word at a time only
 ABG: 7.1/73/58
 ER Doctor says “do you want me to help
you breathe and feel more comfortable?”
 Mrs. R is started on BiPAP
 You are Mrs. R’s Primary Care physician,
admitting her to the floor

31. First Steps
1. Are there advanced directives in place?
2. Do you think CPR is appropriate?
3. Is patient decisional?
•Is there a guardian?
•Is there a named surrogate and
documentation?
4. Know who patient wants to participate

32. How do Residents Discuss
Code Status?
 Nature of the Procedure
 Mech. Ventilation 100%
 Endotracheal Intubation 84%
 Cardioversion 68%
 Chest Compressions 55%
 Intensive Care 32%
 Outcomes
 Any Likelihood of Survival with CPR 13%
 Numerical Estimate of Survival 0%
 Patient’s Values or Goals 10%
 Risks
○ Prolonged ICU Stay 3%
○ Neurologic Sequelae 13%
○ Procedure-Related 16%
Complications
 Alternatives
○ Death 6%
○ Comfort Measures 32%
JGIM; 1995, Tulsky et al. (n=45). Scott, Don, MD, MHS. CHAMP Advance Directives: The “DNR Discussion.”
Univesrity of Chicago Care of the Hospitalized Aging Medical Patient.
champ.bsd.uchicago.edu/.../Advancedirectives.dktemp.nonote.ppt Accessed 3/7/12.

33. Perceived Barriers
 Personal discomfort with acknowledging
mortality
 Fear that raising the topic of death will
compromise the doctor– patient
relationship or cause harm to the patient
 Limited opportunity or ability to establish
rapport and trust with the patient
 Difficulty in managing conflict between
family members
 Few role models who do this well
Calam, Betty, et al. Discussions of “code status” on a family practice teaching ward: What barriers do family
physicians face? CMAJ 2000;163(10):1255-9.

34. Barriers
 “I would always be kind of afraid I
[might] offend people by talking about
this . . . and they would close up on me
and think I’m just giving up on them. . . .”
 “I think they feel that maybe you’re not
telling them the truth, that maybe they’re
sicker than you are telling them —
otherwise why would you be asking
them about that?”
Calam, Betty, et al. Discussions of “code status” on a family practice teaching ward: What barriers do
family physicians face? CMAJ 2000;163(10):1255-9.

35. Barriers
 “I think my training, and perhaps the
training for all physicians at the time,
was such that all our endeavors were to
defeat death, prevent death. So in a way
I think we try to avoid it, maybe be-
cause of our own sense of mortality.”
— Practicing physician
Calam, Betty, et al. Discussions of “code status” on a family practice teaching ward: What barriers do
family physicians face? CMAJ 2000;163(10):1255-9.

36. Intent of CPR
 Helpful in in-hospital arrest or out of
hospital “field arrest” with AED in:
 Vfib/Vtach- especially in case of lightening
 Respiratory arrest only
 Young, generally healthy patients

37. CPR: Dispelling Myths
 TV CPR:
 75% survive immediate arrest
 67% survive until discharge
 Average hospitalized patient with
witnessed arrest:
 30-40% survive immediate arrest
 15-18% survive to discharge

38. CPR: In Hospital Arrest
 Poor Predictive Outcomes:
 Malignancy: 7.8%
○ Bedbound Cancer patients, survival to discharge is 0-
1%
 History of Trauma 9.7%
 Septic Shock 7.6%
 Hepatic Insufficiency 7.3%
 Acute Stroke 11%
 Patients who live in SNF: 0-2%
 PEA: 0-10%

39. What about…
 Patient who is imminently dying and
prognosis is on order of hours to days
 Patient in whom CPR would cause more
harm than the good that would come if they
were successfully resuscitated- probable
prolonged dying process in hospital
 When it is rare that a fully informed patient
and family would want to risk so much harm
for little or no benefit

40. Ethics of CPR
 Slow Code vs. DNR
 Default CPR
 why make patients “opt out”?
 Culture, Hospital Policy
 When is it ok to not offer CPR?
 Beneficence: more harm than good
 Buddy system

41. The Case of Mrs. R
 Mrs. R continues to work hard on
breathing, keeps desaturating
 Just before transfer to the floor, CXR
reveals a large bullous collapse in RUL
 ER places Chest tube
 Appears very anxious, and nods head
 “yes” she is short of breath,
 “no” she is not in pain
 Asks you to please call her daughter to let
her know that her SNF transferred her here
 Keeps trying to take BiPAP off,

42. ght/License Request permission to reuse
e 2.
Chest. 2011 April; 139(4): 802–809. Published online 2011 February 3. doi: 10.1378/chest.10-1798

43. Family Meeting: Goals of
Care
 Introductions
 Define the purpose
 What do the patient and family
understand about the current condition?
 Review current condition
 Review treatment
 What has been done
 What is on the plan for the future

44. Family Meeting: Goals of
Care
 Find out who the patient is:
 Values and goals
 Living Will can come in handy
 Preserve Autonomy, promote beneficence,
advise against potential harm
 Ritual: Strives to ensure dignity
"a way of acting that is designed and
orchestrated to distinguish and privilege what is
being done in comparison to other”
-Catherine Bell
http://www.parkridgecenter.org/Page125.html

45. What life events have saddened you the
most or caused you regret?
What to you most value about your
physical or mental well-being?

46. Prognosis
 Physicians tend to feel very uncomfortable
with this
 Hours-Days/Days-Weeks/Weeks-Months,
etc.
 ePrognosis as a tool
 Probability estimates of effectiveness of
procedures/interventions that are being
offered, if any- use your specialist
 Introduce Palliative Services or Hospice if
appropriate
 DNR does not mean “do not treat”

48. Phrases to Avoid
 Do you want us to do everything?
 It doesn’t look very good.
 What should we do if your (or your
mother’s) heart stops?
 If we do CPR and break your ribs and
you need to be on a breathing
machine, do you want us to do that?
 I think it is time to withdrawal care
 Avoid the term, “futility”

49. Suggested Approach to
Communication
 Acknowledge up front that this is often a
difficult subject
 Emphasize the desire to know the
patient’s values
 Inquire about the patient and family’s
perception of their current illness
trajectory

50. Documentation of Family
Meeting
 Who was there?
 Who was making decisions?
 Patient? Document capacity
 If not, who
 What did you recommend?
 What was decided and why

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52. The Case of Mrs. R
 Family Meeting goes swimmingly
 Decision made to discontinue BiPAP,
change to NC if indicated
 You treat her dyspnea with iv/sc
morphine and a fan in the room, ativan
for disconnecting the brain-lung
connection
 She goes home to live with her daughter
on home hospice