1990:: Nancy Cruzan, PVS from MVA 7 yr earlier1991: Patient Self Determination Act: requires all health care institutions that receive medicare/medicaid funds to provide patients with info on Advance directives, must document presence/asence, and must inform patients about the facility’s policy on witholding/withdrawling careKaren Ann Quinlan (PVS at age 21 after multi drug ingestion, was on vent for 7 mo until parents able to convince doctors to remove vent, pt lived 10 more years on feeding tube) Nancy Cruzan (vs. Missouri Dept of Health-in PVS after MVA- parents wish to remove feeding tube), Terri Shaivo
California was first state to create DPOA specifically for health care decisions, not just for property, 1983
For example,in Pennsylvania and elsewhere, the living will declarationis worded as follows: ‘‘Would you direct yourphysician to withhold or withdraw life-sustaining treatmentthat serves only to prolong the process of dying, if you shouldbe in a terminal condition or in a state of permanent unconsciousness?’’ The life-sustaining treatment is described asfutile and is associated with prolonged dying. The alternativeto this treatment is not named. In effect, this living willquestion poses the choice, ‘‘If you knew you were dying,would you want futile treatment?’’Although the present findings may be taken as furtherargument against the living will, a better approach might beto discard questions that describe circumstances like ‘‘a terminalcondition or state of permanent unconscious’’ andtreatments that ‘‘serve only to prolong the process of dying’’and to substitute a description of circumstances that approximatethose more likely to occur.
Psychiatric advance directives are relatively new legal instruments that may be used to document a competent person’s specific instructions or preferences regarding future mental health treatment. Psychiatric advance directives can be used to plan for the possibility that someone may lose capacity to give or withhold informed consent to treatment during acute episodes of psychiatric illness
Article with Appendix
Emmanuel & Emmanuel: patients want their doctors to talk with them about their EOL wishes.
Lantos, Diem 1996, Saklayen 1995, Danciu 2004, Ehlenback 2009
CPR was never intended for these patients!
Venn diagrams of the selections by patients/surrogates and physicians selections of the most important goals of care.
“I would like to talk with you about possible health care decisions in the future”
For example, Do you love to be outdoors? To sip coffee or tea in the morning? Does being able to read or listen to music bring you pleasure?
Caring Conversations: Talking about goals of care with patients and families
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 Bioethics Family Medicine Spokane Kansas City Hospice and Palliative Medicine
―all of us, no matter what our age, gender, class,nationality, religious tradition or not, hope to die well, inreasonable comfort, ripe in years, compos mentis,surrounded by our loved ones, at peace with ourselvesand the world, feeling we have lived a good life andprepared 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
• 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 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 prognosisWinter L, et al. Ask a different question, get a different answer: why living wills are poor guides to care preferenceat the end of life.‖ J Palliat Med. 2010 May;13(5):567-72.
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)
Five WishesSummary ofpatient wishesfor medicalrecord
Project GRACE:Guidelines forResuscitationAndCare atEnd of Life
Advanced Directive tools createdspecifically for kids/teens and young adults 5 Wishes: My Wishes My Voice, My Choice Caring Conversations for Young Adults
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 themClark and Liemgruber, AAHPM 2012 Conference, Denver OMG, RUS? Talking with Teens about 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 Steps1. 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 familyphysicians 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 dofamily 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 physicianCalam, Betty, et al. Discussions of ―code status‖ on a family practice teaching ward: What barriers dofamily 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 lightening Respiratory arrest only Young, generally healthy patients
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
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 good Buddy 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 pain Asks you to please call her daughter to let her know that her SNF transferred her here Keeps trying to take BiPAP off,
ght/License Request permission to reusee Chest. 2011 April; 139(4): 802–809. Published online 2011 February 3. doi: 10.1378/chest.10-1798 2.
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
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 andorchestrated to distinguish and privilege what isbeing done in comparison to other” -Catherine Bellhttp://www.parkridgecenter.org/Page125.html
What life events have saddened you themost or caused you regret?What to you most value about yourphysical 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 appropriate DNR 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 toCommunication 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 FamilyMeeting 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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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