CARING CONVERSATIONS

Discussing Goals of Care

and Advance Directives

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

Disclosures

I do not have any financial disclosures to declare

Associations:Center for Practical BioethicsFamily Medicine SpokaneKansas City Hospice and Palliative Medicine

wellness for the healthy

healing for the sick

comfort forthose in the process of

dying

Patient Self Determination Act

What is a “good death?”

“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.

Nothing is as certain as Death and Taxes

April

16

http://www.nhdd.org/

CREATING THE DOCUMENT, MAKING IT OFFICIAL• 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?

Advance Directive:

Living Will

+

Durable Power of Attorney for Health Care Decisions

= Advance Directive

The Case Against Advance Directives Even among the 21% of patients that

have completed Advance DirectivesThe document is unavailable at time of needEven 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 prognosisWinter 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.

Kansas/Missouri: TPOPP

TOOLS FOR CREATING ADVANCE DIRECTIVES Aging With Dignity: Five Wishes Center for Practical Bioethics

Caring ConversationsCourageous 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)

Five Wishes

Summary of patient wishes for medical record

Project GRACE:

Guidelines for ResuscitationAndCare at End of Life

Washington State DSHS Form

By Caring Connections(NHPCO)

OMG- RUS?

What about Goals of Care discussions for infants, children, and teens with life threatening illness?

ADDING TO YOUR TOOL BOXAdvanced Directive tools created specifically for kids/teens and young adults

5 Wishes: My Wishes My Voice, My Choice Caring Conversations for Young Adults

PEARLS

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

VALUES & DESIRES FOR BOTH YOUR

LIVING AND YOUR DYING

Evidence Based Medicine for Directing and teaching a Family Meeting and Discussing

Code Status

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

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

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.

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 wellCalam, 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.

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.

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.

Intent of CPR

Helpful in in-hospital arrest or out of hospital “field arrest” with AED in:Vfib/Vtach- especially in case of lighteningRespiratory arrest onlyYoung, generally healthy patients

CPR: Dispelling Myths

TV CPR: 75% survive immediate arrest67% survive until discharge

Average hospitalized patient with witnessed arrest:30-40% survive immediate arrest15-18% survive to discharge

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%

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

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 goodBuddy system

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 painAsks you to please call her daughter to let her

know that her SNF transferred her hereKeeps trying to take BiPAP off,

Chest. 2011 April; 139(4): 802–809. Published online 2011 February 3. doi: 10.1378/chest.10-1798

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 doneWhat is on the plan for the future

Family Meeting: Goals of Care Find out who the patient is:

Values and goalsLiving Will can come in handyPreserve 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

What life events have given you most joy and fond memories?What life events have saddened you the most or caused you regret?

What to you most value about your physical or mental well-being?

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 appropriateDNR does not mean “do not treat”

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”

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

Documentation of Family Meeting Who was there? Who was making decisions?

Patient? Document capacityIf not, who

What did you recommend? What was decided and why

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