Effective Planning for Health Care Decision-making at the End of Life
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Effective Planning for Health Care Decision-making at the End of Life Charles P. Sabatino Commission on Law and Aging American Bar Association August 2006. These slides are available at: www.abanet.org/aging/cleconferencematerials.html. Outline P. 2.

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Effective Planning for Health Care Decision-making at the End of Life

Charles P. Sabatino

Commission on Law and Aging

American Bar Association

August 2006

These slides are available at:

www.abanet.org/aging/cleconferencematerials.html


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Outline P. 2 End of Life

I. The Legislative Landscape of Surrogate Decision-making

  • Default Surrogate Laws

  • Health Care Advance Directives

    • Health Care DPAs

    • Living Wills

    • Mental Health Advance Directives

  • Out-of-Hospital DNR Laws

  • Organ Donation Laws

  • Guardianship Laws

  • Physician Assisted Suicide (Oregon)

P. 4 - 5


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II. Why Ads Have Not Worked as Well as Hoped End of Life

A great idea but:

  • Most people don’t do.

  • When they do, a standard form doesn’t provide much guidance.

  • When they name an agent, they seldom explain their wishes to agent.

  • Even if they do, health care providers usually don’t know about the directive.

  • Even if providers know directive exists, it isn’t in medical record.

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

P. 6


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Starting Point: End of LifeWhat ADs Can’t Do

P. 7 - 8

  • Can’t provide cookbook directions.

  • Can’t change fact that dying is complicated.

  • Can’t eliminate personal ambivalence.

  • Can’t be a substitute for Discussion.

  • Can’t control health care providers.


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P. 8 End of Life

What ADs Can Do

  • CAN be an important part of a developmental process of advance planning communication

    2. CAN help you stop and think and DISCUSS.

    • Less about specific medical decisions, more about VALUES & PRIORITIES: What’s important to you in living? What conditions of living may outweigh the value of continued life?

      3. CAN empower and give DIRECTION if reflective of the patient’s voice.

    • Not necessarily the legislature’s canned languange.


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P. 8 - 9 End of Life

III. More Effective Advance Planning

  • Emphasize the process, not the transaction.

    * * *

    4. Engage your client. Offer a workbook approach, e.g., see Lawyer’s Tool Kit for Health Care Advance Planning (www.abanet.org/aging)

    5. Give priority to appointment of Proxy.

    6. Stress periodic review of one’s wishes.

    7. Have you done your own advance planning?


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Drafting Issues End of Life

P. 9

Appendix

  • Basic legal requirements

  • Selecting an Agent

    • Who’s prohibited?

    • Criteria – Tool Kitfor Advance Health Care Planning

    • Co-Agents?

    • What is your duty to consultation/education?

      NEW: See Making Medical Decisions for Someone Else: A Maryland Handbook. Consider adapting a version for your state.

www.abanet.org/aging


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P. 10 End of Life

Drafting Issues

3. Agent’s Scope of Authority/Discretion

  • Be aware of statutory limits & post mortem authority (VA)

  • Be explicit

  • Maximum discretion? Do you want agent to be able to override written instructions, if any?

    See(Appellant) v. Maryland Dept. of Health & Mental Hygiene (February 25, 2002):

    www.dhmh.state.md.us/ohcq/download/alj.pdf


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Drafting Issues End of Life

P. 11

Often overlooked– Authority to . . .

  • Make anatomical gifts, autopsy, disposition of remains

  • Contract for, hire, fire health care & support personnel

  • Direct care even if Pregnancy

  • Change domicile

  • Execute releases & waivers (the “carrot”)

  • Institute legal action (the “stick”).

  • Consent to experimental treatment

  • Delegate d-m during absence

  • Care for pets

  • Determine Visitation (especially important in Virginia)

  • Make mental health decisions

    Be sure to coordinate authority with Property DPA


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Drafting Issues End of Life

P. 11

4. Effective Date: immediate or springing?

5. Determining D-M Capacity

6. Treatment Instructions?

If you do include specific instructions…

  • Medical history is important

  • Focus on quality of life. What does that mean for client? Benefits & burdens are subjective. Consider Workbook approach, or “Values history”

  • Never say never, unless you really mean it.

  • Don’t overlook secondary illnesses

P. 12 - 13


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. End of Life

.

Workbook example


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Drafting Issues End of Life

P. 14

Other instructions:

  • Pain Control

  • Engage principal to greatest extent possible

  • Nominate Guardian

  • Perhaps designate primary physician

  • Eliminate unwanted surrogates

  • Anatomical Gifts

  • Carrots and sticks

  • Pregnancy

  • Pets

  • Personal/environmental/emotional.

    See Five Wishes at www.agingwithdignity.org



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Drafting Issues End of Life

P. 14 - 15

Post-execution Logistics

  • An invisible AD = no AD

  • Still haven’t talked to physician or agent?

  • Wallet card

  • AD registries

    • e.g., AZ, CA, MD, MT, NC

    • USLivingWillRegistry.com

    • Docubank.com

    • Full Circle Registry: protectedlivingwill.com

    • NationalLivingWills.com

    • America Living Will Registry: ALWR.com

  • Driver’s License Notice?


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Drafting Issues End of Life

P. 16

Provide a framework for review…

When any of the 5 D’s occur:

  • You reach a new DECADE

  • You experience a DEATH of family or friend

  • You DIVORCE

  • You receive a new DIAGNOSIS

  • You have a significant DECLINE in your condition as measured by Activities of Daily Living (ADLs)


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P. 16 End of Life

IV. HIPAA Issues

Access to protected health information by…

  • Agent under health care DPA ? – Not a problem.

  • Putative agent under springing power ? Could be a problem.

  • Close family member ? – Could be a problem.

www.hhs.gov/ocr/hipaa


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Process-Oriented Advance Planning Summary End of Life

  • Don’t do McDirectives

  • Your client probably can’t pay you enough to go through the process in depth, so give the client the tools to do the important part.

    • Value Worksheet

    • Thought-provoking exercises

    • Provide Different model ADs

    • Ensure client has talked to proxy & doctor

    • Help educate the agent/proxy

  • Periodic review – the 5 D’s.


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    P. 18-19 End of Life

    V. POLST – Beyond ADs

    • Last 30 yrs: standardizing pt. communications ADs

    • Tipping Point: POLST Paradigm  standardizing

    • physicians EOL orders. Focus on here and now.

    • Oregon’s Physicians Orders for Life-Sustaining

    • Treatment – requires:

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

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

    • All providers ensure form travels with patient.

    www.POLST.org


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    P. 20 - 22 End of Life

    VI. Resources

    • Selected Advance Directive Forms

    • Work Book Resources

    • General EOL Care Resources

    • Guidance for Proxies

    • Selected Bibliography


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    We sometimes seem to act as though dying were solely the concern of the dying person. The fact is, we die, as we live, in a web of vital and complex relationships.

    -- Bruce Jennings, The Hasting Center