End of Life Issues:End of Life Issues:

Navigating the Legal and Navigating the Legal and Practice LandscapePractice Landscape

Charles P. SabatinoCharles P. SabatinoABA Commission on Law and AgingABA Commission on Law and Aging

Christine Nero CoughlinChristine Nero CoughlinWake Forest University School of LawWake Forest University School of Law

Summer Leadership ConferenceSummer Leadership Conference

July 9, 2005July 9, 2005

Predominant Feature of the Predominant Feature of the Legal LandscapeLegal Landscape

A. Federal LawA. Federal Law

B. State Legislation addressing:B. State Legislation addressing: Default Surrogate LawsDefault Surrogate Laws Health Care Advance DirectivesHealth Care Advance Directives

Health Care DPAsHealth Care DPAs Living Wills Living Wills

Out-of-Hospital DNR Laws/POLSTOut-of-Hospital DNR Laws/POLST Organ Donation LawsOrgan Donation Laws Guardianship LawsGuardianship Laws

Federal Law:Federal Law: Patient Self-Determination Act (1990)Patient Self-Determination Act (1990)

Requires Hospitals, NHs, HHAs and HMOs in Requires Hospitals, NHs, HHAs and HMOs in Medicare or Medicaid to:Medicare or Medicaid to:

1. Give 1. Give allall adults at admission written info about: adults at admission written info about:• Your hcdm rights.Your hcdm rights.• Their policies re hcdm.Their policies re hcdm.

2.2. Ask you if you have an AD and document it Ask you if you have an AD and document it inin

your medical record.your medical record.

3. Provide education to staff & community on3. Provide education to staff & community on issues re ADs.issues re ADs.

4. Prohibition: Can't discriminate based on ADs.4. Prohibition: Can't discriminate based on ADs.

State Law: State Law: Default Surrogate Laws Default Surrogate Laws

37 States + DC37 States + DC• Free standing or integrated in AD LawFree standing or integrated in AD Law

– 24 States + DC24 States + DC

• Appended to something else - Appended to something else - 16 States16 States– Informed consent laws – 4 statesInformed consent laws – 4 states– LW laws – 7 statesLW laws – 7 states– DPAHC laws – 2 statesDPAHC laws – 2 states– Decision-specific surrogate consent – 3 states Decision-specific surrogate consent – 3 states

(NY - DNR; OK - exper’tl treatment; WI - facility (NY - DNR; OK - exper’tl treatment; WI - facility admissions) admissions)

Summary chart:Summary chart:www.abanet.org/aging/update.htmlwww.abanet.org/aging/update.html

Default Surrogate LawsDefault Surrogate Laws Key ProvisionsKey Provisions

• Range of SurrogatesRange of Surrogates

• Priority of SurrogatesPriority of Surrogates

• Scope of Decision Making AuthorityScope of Decision Making Authority

• Triggers/Pre-conditionsTriggers/Pre-conditions

• How Disagreements are HandledHow Disagreements are Handled

• Most don’t address the Most don’t address the Unbefriended.Unbefriended.

Summary chart:Summary chart:www.abanet.org/aging/update.htmlwww.abanet.org/aging/update.html

Default Surrogate LawsDefault Surrogate Laws Will there be a Schaivo Backlash?Will there be a Schaivo Backlash?

Current Legal Landscape:Current Legal Landscape:• Surrogates should follow the “substituted Surrogates should follow the “substituted

judgment” standard = patient’s judgment” standard = patient’s probable probable wisheswishes• Default in these states: “best interests” standardDefault in these states: “best interests” standard• A few states require “clear and convincing A few states require “clear and convincing

evidence” standard = patient’s evidence” standard = patient’s actual actual wisheswishes• No presumption concerning intention of patient No presumption concerning intention of patient

who has not executed an advance directive re who has not executed an advance directive re w/h or w/d of life support, incl. artificial N & H.w/h or w/d of life support, incl. artificial N & H.

Default Surrogate LawsDefault Surrogate Laws Will there be a Schaivo Backlash?Will there be a Schaivo Backlash?

Starvation and Dehydration of Persons with Starvation and Dehydration of Persons with Disabilities Act Disabilities Act – pending in a dozen states– pending in a dozen states

•• Imposes presumption that patient “has directed .. providers to Imposes presumption that patient “has directed .. providers to provide … nutrition and hydration to a degree that is sufficient to provide … nutrition and hydration to a degree that is sufficient to sustain life.”sustain life.”

•• Three Exeptions:Three Exeptions:

1.1. Medical circumstances under which n & h is medically Medical circumstances under which n & h is medically impossible, ineffective, or injurious. impossible, ineffective, or injurious.

2.2. Advance directive specifically authorizes the w/h or w/d Advance directive specifically authorizes the w/h or w/d of N & H to the extent the authorization applies.of N & H to the extent the authorization applies.

3.3. Clear and convincing evidence that the person, when Clear and convincing evidence that the person, when legally capable of making health care decisions, gave legally capable of making health care decisions, gave express and informed consent to withdrawing or express and informed consent to withdrawing or withholding hydration or nutrition in the applicable withholding hydration or nutrition in the applicable circumstances.circumstances.

Advance DirectivesAdvance DirectivesA Case of BalkanizationA Case of Balkanization

– Multiple AD statutes: 23 statesMultiple AD statutes: 23 states– Multiple statutory formsMultiple statutory forms

• Single form: 17 statesSingle form: 17 states• No forms: 4 states (MA, MI, NJ, OH)No forms: 4 states (MA, MI, NJ, OH)

– Mandatory AD forms (Mandatory AD forms (substantially in the substantially in the following formfollowing form): ): 13 states13 states

– Mandatory disclosures: 8 statesMandatory disclosures: 8 states

– Mandatory phrases: 9 statesMandatory phrases: 9 states

– Witnessing + notarization: 3 statesWitnessing + notarization: 3 states

– Special Institutional witnessing: 7 statesSpecial Institutional witnessing: 7 states

– Required triggers (terminal/PVS)Required triggers (terminal/PVS)

Balkanization -- continuedBalkanization -- continued

Any benchmarks of simplicity/uniformity?Any benchmarks of simplicity/uniformity?• Five Wishes friendly? - 35 States + DCFive Wishes friendly? - 35 States + DC• Oral directives permitted? Oral directives permitted?

11 states – CA, CT, DE, FL, HI, LA, MD, 11 states – CA, CT, DE, FL, HI, LA, MD, MS,MS,

NM, TN, VANM, TN, VA

C. Sabatino, National Advance Directives: One Attempt to C. Sabatino, National Advance Directives: One Attempt to Scale the Barriers, 1 Scale the Barriers, 1 NAELA JournalNAELA Journal 131 (2005). 131 (2005).

Advance DirectivesAdvance Directives- - the Dark Side -the Dark Side -

See e.g., See e.g.,

• A .Fagerin & C. Schneider, “Enough: The Failure of the Living A .Fagerin & C. Schneider, “Enough: The Failure of the Living Will,” 34 The Hastings Center Report 30-42 (March-April 2004).Will,” 34 The Hastings Center Report 30-42 (March-April 2004).

• E.J. Larson and T.A. Eaton, “The Limits of Advance Directives: E.J. Larson and T.A. Eaton, “The Limits of Advance Directives: A History and Assessment of the Patient Self-Determination A History and Assessment of the Patient Self-Determination Act,” Act,” Wake Forest Law ReviewWake Forest Law Review, 32 (1997): at 278., 32 (1997): at 278.

• J. Teno J. Teno et alet al, “Advance Directives for Seriously Ill Hospitalized , “Advance Directives for Seriously Ill Hospitalized Patients: Effectiveness with the Patient Self-Determination Act Patients: Effectiveness with the Patient Self-Determination Act and the SUPPORT Intervention,” and the SUPPORT Intervention,” Journal of the American Journal of the American Geriatrics SocietyGeriatrics Society, 45 (1997): 500-507., 45 (1997): 500-507.

• D. Orentlicher, “The Illusion of Patient Choice in End-of-Life D. Orentlicher, “The Illusion of Patient Choice in End-of-Life Decisions, Decisions, JAMAJAMA, 267 (1992): 2101-2104., 267 (1992): 2101-2104.

Advance DirectivesAdvance Directives- - the Dark Side -the Dark Side -

A great idea but the research indicatesA great idea but the research indicates::• Most people don’t do. Most people don’t do. • When they do, standard form doesn’t provide When they do, standard form doesn’t provide

much guidance. much guidance. • They seldom explain their wishes to agent.They seldom explain their wishes to agent.• Health care providers often don’t know about Health care providers often don’t know about

the directive. the directive. • Even if providers know directive exists, it isn’t Even if providers know directive exists, it isn’t

in medical record.in medical record.• Even if in the record, it isn’t visible.Even if in the record, it isn’t visible.

What ADs What ADs Can’tCan’t Do Do

1.1. Can’t provide cookbook directions. Can’t provide cookbook directions. – Dying is complicated.Dying is complicated.– Personal ambivalence is universal.Personal ambivalence is universal.

2.2. Can’t be a substitute for Discussion.Can’t be a substitute for Discussion.

3.3. Can’t control health care providers.Can’t control health care providers.

What ADs What ADs CanCan Do Do

1.1. CAN be an important part of a CAN be an important part of a developmental PROCESS of advance developmental PROCESS of advance planning discussionplanning discussion – Plan of Care modelPlan of Care model

2. CAN help you stop and think and DISCUSS. 2. CAN help you stop and think and DISCUSS. – Use a Workbook approach.Use a Workbook approach.

3. CAN empower and give DIRECTION if 3. CAN empower and give DIRECTION if translated into the language of health care translated into the language of health care providers.providers.

Present Trends & ChallengesPresent Trends & Challenges

1.1. Simplification/consolidation (de-legalizing) of Simplification/consolidation (de-legalizing) of advance directive law.advance directive law.– 21 States -- AL*, AZ, CA, CT, DE*, FL, HI*, KY, ME*, MD, MN, 21 States -- AL*, AZ, CA, CT, DE*, FL, HI*, KY, ME*, MD, MN,

MS*, NJ, NM*, OK, OR, TN, VA, VT WV, WY*MS*, NJ, NM*, OK, OR, TN, VA, VT WV, WY* * Modeled to some extent on UHCDA* Modeled to some extent on UHCDA

2.2. Preference for & support of appointment of a proxy.Preference for & support of appointment of a proxy.– Proxy trumps LW and guardianProxy trumps LW and guardian – In drafting, address scope of proxy’s discretionIn drafting, address scope of proxy’s discretion

3.3. Changing advance planning from a form to process.Changing advance planning from a form to process.– Avoid mandatory forms or languageAvoid mandatory forms or language

4.4. More social prompts & tools for advance planning.More social prompts & tools for advance planning.– Driver’s license notice: e.g., AK, IL, MN, MO, SD, TX, VT Driver’s license notice: e.g., AK, IL, MN, MO, SD, TX, VT – Registries: e.g., AZ, CA, MT, NC, VTRegistries: e.g., AZ, CA, MT, NC, VT

Present Trends & ChallengesPresent Trends & Challenges5.5. More non-judicial pathways for More non-judicial pathways for

decision-making/dispute resolution.decision-making/dispute resolution.

– e.g. ethics committees.e.g. ethics committees.

– ““Unbefriended” – research neededUnbefriended” – research needed

6.6. Possible rethinking of substituted judgment.Possible rethinking of substituted judgment.

– Danger of Schiavo backlack.Danger of Schiavo backlack.

7.7. Translating patient care goals/wishes into the Translating patient care goals/wishes into the language of the health care system.language of the health care system.

– POLST and out-of-hospital DNR protocols.POLST and out-of-hospital DNR protocols.

The POLST ParadigmThe POLST Paradigm““Physician’s Orders for Life Sustaining Treatment”Physician’s Orders for Life Sustaining Treatment”

Last 30 years:Last 30 years: standardizing patient communications – standardizing patient communications –

statutory advance directivesstatutory advance directives

Tipping Point:Tipping Point: POLSTPOLST Paradigm – standardizing Paradigm – standardizing physicians EOL orders. physicians EOL orders.

Oregon’s Oregon’s Physicians Orders for Life-Sustaining Physicians Orders for Life-Sustaining TreatmentTreatment – requires: – requires:

1.1. Doc to determine patient’s wishes re: CPR, care Doc to determine patient’s wishes re: CPR, care goals (comfort vs. treatment), antibiotics, N&H.goals (comfort vs. treatment), antibiotics, N&H.

2.2. Translate into doctors orders on visually distinct Translate into doctors orders on visually distinct (bright pink) med file cover sheet.(bright pink) med file cover sheet.

3.3. All providers ensure form travels with patient.All providers ensure form travels with patient.

Top half…Top half…

Bottom half…Bottom half…

States with Variations of POLSTStates with Variations of POLST

See www.POLST.orgSee www.POLST.org

ResourcesResources

Consumer’s/Lawyer’s Tool Kit for Consumer’s/Lawyer’s Tool Kit for Health Care Advance Planning:Health Care Advance Planning:

www.abanet.org/agingwww.abanet.org/aging

Legislative Charts:Legislative Charts:

www.abanet.org/aging/update.htmlwww.abanet.org/aging/update.html

POLST approach:POLST approach:

www.POLST.orgwww.POLST.org

Communication

• Helps others to understand your wishes

• Helps you to think about what you want

• Helps to save money

• Helps bring families and friends closer together.

More Effective Advance PlanningMore Effective Advance Planning

1.1. GoalsGoals

2.2. Health care proxyHealth care proxy

3.3. SpecificitySpecificity

4.4. EnforcementEnforcement

5.5. ReviewReview

Drafting Issues - goalsDrafting Issues - goals

1.1. Consider different end of life Consider different end of life treatmentstreatments

2.2. Create a Values HistoryCreate a Values History

Drafting Issues - Agent

• Must be 18 years old• Someone you trust• Not your health care provider• Not on the staff of a facility that provides for your

care• Not a guardian of your finances• Not an employee of a governmental agency

financially responsible for your care• Not any person serving as an agent for 10 or more

persons

Drafting Issues - specificity

• An AD does not have to give directions or guidelines for your agent

• If you have wishes, spell them out in the document

• Make sure to specifically include wishes with n & h

• Write instructions carefully so they do not restrict the authority of agent

Drafting IssuesDrafting Issues

Often overlooked– Authority to . . .Often overlooked– Authority to . . .• Make anatomical gifts, autopsy, disposition of remainsMake anatomical gifts, autopsy, disposition of remains• Consent to aggressive pain/symptom controlConsent to aggressive pain/symptom control• Contract for, hire, fire health care & support personnel Contract for, hire, fire health care & support personnel • Direct care even if pregnantDirect care even if pregnant• Day to day care and placement optionsDay to day care and placement options• Change domicile Change domicile • Execute releases & waivers Execute releases & waivers • Consent to Consent to experimental treatment experimental treatment • Determine visitation Determine visitation

* Be sure to coordinate with property DPA e.g., who cares * Be sure to coordinate with property DPA e.g., who cares for pets?for pets?

Drafting IssuesDrafting Issues

Specific Instructions: tipsSpecific Instructions: tips• Medical history is most importantMedical history is most important• Focus on quality of life. Benefits & burdens Focus on quality of life. Benefits & burdens

are subjectiveare subjective• Never say neverNever say never• Don’t overlook secondary illnessesDon’t overlook secondary illnesses• Consider eliminating unwanted surrogatesConsider eliminating unwanted surrogates• Can agent override specific instructions?Can agent override specific instructions?

Drafting Issues – EnforcementDrafting Issues – Enforcement

Post-execution LogisticsPost-execution Logistics• An invisible AD =An invisible AD = no AD no AD• Wallet cardWallet card• AD registries (besides state)AD registries (besides state)

–USLivingWillRegistry.comUSLivingWillRegistry.com–Full Circle Registry: Full Circle Registry:

protectedlivingwill.comprotectedlivingwill.com–NationalLivingWills.comNationalLivingWills.com–America Living Will Registry: ALWRAmerica Living Will Registry: ALWR.com.com

Drafting Issues - ReviewDrafting Issues - Review

When to review AD…When to review AD…

When any of the 5 D’s occur:When any of the 5 D’s occur:1.1. You reach a new You reach a new DECADEDECADE2.2. You experience a You experience a DEATHDEATH of family or of family or

friendfriend3.3. You You DIVORCEDIVORCE4.4. You receive a new You receive a new DIAGNOSISDIAGNOSIS5.5. You have a significant You have a significant DECLINEDECLINE in your in your

condition as measured by Activities of condition as measured by Activities of Daily Living (ADLs)Daily Living (ADLs)

HIPAA QuestionsHIPAA Questions

Access to protected health information by…Access to protected health information by…

• Agent under health care DPA [mandatory, 45 CFR Agent under health care DPA [mandatory, 45 CFR §164.502(g)]§164.502(g)]

• Close family member [professional judgment/best Close family member [professional judgment/best interests 45 CFR §164.510(b)]interests 45 CFR §164.510(b)]

• Putative agent under springing power [same Putative agent under springing power [same provision as above]provision as above]

Also see Also see www.hhs.gov/ocr/hipaawww.hhs.gov/ocr/hipaa

ResourcesResources

Legislative Charts:Legislative Charts:

www.abanet.org/aging/update.htmlwww.abanet.org/aging/update.html

Advance Directive FormsAdvance Directive Forms

• Five Wishes Advance DirectiveFive Wishes Advance Directive. Published by Aging . Published by Aging with Dignity. with Dignity.

• Shape Your Health Care Future with Health Care Shape Your Health Care Future with Health Care Advance DirectivesAdvance Directives (1995)(1995).. Published by the ABS, Published by the ABS, AMA, AARP.AMA, AARP.

• The Medical DirectiveThe Medical Directive, by Linda L. Emanuel, M.D., , by Linda L. Emanuel, M.D., and Ezekiel J. Emanuel, M.D. and Ezekiel J. Emanuel, M.D.

• Ethical Wills: Putting Your Values on PaperEthical Wills: Putting Your Values on Paperby Barry K. Baines (Perseus Publishing, 2001)by Barry K. Baines (Perseus Publishing, 2001)

End-of-Life GuidesEnd-of-Life Guides

• Lawyer’s Tool Kit for Advance Health Care Lawyer’s Tool Kit for Advance Health Care PlanningPlanning, ABA Commission on Legal , ABA Commission on Legal Problems of the Elderly (2000)Problems of the Elderly (2000)

• Handbook for Mortals: Guidance for People Handbook for Mortals: Guidance for People Facing Serious IllnessFacing Serious Illness, by Joanne Lynn, MD, , by Joanne Lynn, MD, and Joan Harrold, MD (NY: Oxford University and Joan Harrold, MD (NY: Oxford University Press, 1999). Press, 1999).

• Hard Choices for Loving People:Hard Choices for Loving People: CPR, CPR, Artificial Feeding, Comfort Measures Only and the Artificial Feeding, Comfort Measures Only and the

Elderly PatientElderly Patient, by Hank Dunn . , by Hank Dunn .