“for human beings, life is meaningful because it is a

“For human beings, life is meaningful because it is a story.

….And in stories, endings matter”

-Atul Gawande

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UVMHealth.org/MedCenterMedical Aid in Dying (MAID): Responding to Suffering,

Embracing Choice

Diana Barnard, MDAssistant Professor of Family Medicine

Division of Palliative MedicineUVM Health Network-Porter Medical Center

Dbarnard@portermedical.org

Jaina Clough, MDAssistant Professor of Medicine, UVM

Hospice Medical DirectorUVM Home Health Hospice

Jaina.Clough@Uvmhealth.org

No Financial Disclosures

We work in a state where MAID is legal.

We embrace the integration of MAID into comprehensive patient centered end of life care.

Disclosures

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• To better understand Medical Aid in Dying

– definition and history – patient motivations– clinician ambivalence

• To review Vermont’s Medical Aid in Dying law

• To better recognize and respond to suffering

Objectives

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● IS ○ A practice that legally allows a physician to prescribe

a lethal dose of medication for a terminally ill patient to self-administer for the purpose of voluntarily ending life.

MAID

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● IS NOT ○ Euthanasia○ A proxy for quality end of life care

VT Hospice Use for Deaths in Medicare, >65

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NH Hospice Use for Deaths in Medicare,>65

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Cause of Death 1900 vs. 2010

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We all Die

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“The problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had an incorrect view of what makes life significant. The problem is that they have had almost no view at all.

Medicine’s focus is narrow. Medical professionals concentrate on repair of health, not

sustenance of the soul”

-Atul Gawande, MD

The changing face of dying

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Story photo

11With gratitude to Peggy Stevens and Family

who

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what

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story

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Ambivalence ● a state of conflicted emotions● uncomfortable, especially when facing a decision Van Harreveld F., Rotjens B. T., Rotteveel M. “Ambivalence and Decisional Conflict as a cause of psychological discomfort: Feeling Tense Before Jumping off the Fence”. Journal of Experimental Psychology (2009) 45:167-173.

Opportunity● to explore patient concerns about dying

Consider your response to a request for MAID

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• Track your own response, including ambivalence

• No physician is obligated to prescribe for MAID

• Consider in advance how you might generally respond to a request for MAID

– It may depend on the relationship you have with the patient– You may involve other providers

• Because of role• Because of personal beliefs• For your own support and education

Responding to requests for MAID

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support

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priorities, quality of life

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Why do you think the patient is asking about MAID ?

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MAID in Oregon 2019 Report

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Suffering

“Suffering is experienced by persons, not merely bodies, and has its source in challenges that threaten the intactness of the person as a complex social and psychological entity...”

-Eric Cassell, MD, NEJM 1982

The Four Dimensions of Suffering

• Physical:– Pain, weakness, dyspnea, fatigue, disability

• Psychological– Depression, anxiety, previous loss, grief

• Social– Family, economic, caregiver burden, lack of

support• Existential

– Body changes, questions of purpose, meaning, anticipation and uncertainty, sense of self

• What are you most worried about?

• What does suffering mean to you? What does being a burden mean to you?

• What has been your past experience of serious illness, death and dying?

• Explore emotion

Responding to requests for MAID: Exploring suffering

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• BE CURIOUS

• Are you worried about pain, lingering, being a burden?

• If we could change (biggest concern/worry/fear) or improve how you feel, would that change your mind about wanting this option?

• What would a good death look like to you ?

• How would you know when it is the right time? • Assess risk of impulsivity , first obligation is to address acute suffering

Responding to requests for MAID:Exploring suffering

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Responding to requests for MAID: responding to suffering

• Discuss other options your patient has to maintain control and to minimize suffering

• Normalize option to decline or to stop burdensome treatments which may prolong suffering near end of life

• Consider alternatives to MAID– Voluntarily Stopping Eating and Drinking (VSED)

suffering

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Hope and plan B

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Medical Aid in Dying in Vermont

• Grassroots effort; years of education, public debates, legislative champions

• Important Quality of Care Statutes/Laws passed along the way

• Patient Bill of Rights for Palliative Care and Pain Management

• Mandatory CME for first time in state history• Mandatory CME in Pain Management, Palliative

and/or Hospice Care• MAID Became legal in May, 2013

Medical Aid in Dying in Vermont: first biannual report in Jan 2018

Data Collected– how many patients have met the requirements of the act – the underlying causes of death– the number of prescriptions that have been filled by qualified patients–

52 events (completed paperwork with VDH)– 83% of cases are Cancer – 14% of cases are ALS– 29 utilized the patient choice prescription (60%)– 17 died from the underlying disease (35%);

Next report due January, 2020.

MAID in Vermont-Eligibility

• Terminal Illness, <= 6 month Prognosis*• Vermont Resident, age >=18• Under the care of a Vermont licensed Physician• Voluntarily make a request• Capable of making an informed decision• Able to self administer medication to hasten

death

https://www.healthvermont.gov/sites/default/files/documents/2016/11/End_of_Life_Choice_physician_reporting_form.pdf

MAID VT Process: MD reporting form

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https://www.healthvermont.gov/sites/default/files/documents/2016/11/End_of_Life_Choice_consulting_physician_reporting_form.pdf

MAID VT Process: secondary/consulting MD form

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If either physician feels judgment impaired– STOP process– If doubt about impairment of judgment, referral to evaluate

• Psychiatrist• Psychologist• Licensed Clinical Social Worker

MAID Process

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• Prescribing Physician– File a report with Vermont Department of Health – http://www.healthvermont.gov/systems/patient-choice-and-control-e

nd-life/forms-patients-and-physicians

– Within 10 days of patient’s death or 60 days of writing prescription, complete follow up form regarding status of ingestion

MAID Process

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eol plan

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”I don’t Want to Go, but I can’t stay”

-With hospice nurse in attendance-drank medicine-died quickly and peacefully in his beautiful home on Echo lake, surrounded by family

Story

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References and Resources

Oregon Public Health Division:http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/index.aspx

Compassion and Choices: http://www.compassionandchoices.org/

Compassion and Choices Doc2Doc https://www.compassionandchoices.org/research/doc2doc-program/

Vermont Law/Act 39 http://www.leg.state.vt.us/docs/2014/Acts/ACT039.pdf

Patient Choices Vermont http://www.patientchoices.org/

Vermont Department of Health http://www.healthvermont.gov/systems/patient-choice-and-control-end-life/forms-patients-and-physicians

References and Resources

The Nature of Suffering and the Goals of Medicine; N Engl J Med 1982; 306:639-645; DOI: 10.1056/NEJM198203183061104; http://www.ericcassell.com/download/ReliefOfSuffering.pdf

Clinical Criteria for Physician Aid in Dying; Journal of Palliative Medicine Volume 19, Number 3, 2016; Mary Ann Liebert,Inc.; DOI:10.1089/jpm.2015.0092

https://www.liebertpub.com/doi/pdf/10.1089/jpm.2015.0092

Being Mortal:Medicine and What Matters in the End; Atul Gawande, ISBN-13: 9780805095159; Holt Henry & Company, Inc, 2014

https://www.dartmouthatlas.org