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The Role of Social Workers in Medical Aid in Dying

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In this presentation

Roles of social workers in end-of-life
Death with Dignity
Medical Aid in Dying (MAID)
MAID and hospice
Legal landscape
Voluntarily Stopping Eating and Drinking (VSED)
Barriers to access
SW values and ethics
SW roles
Alternatives
Recommended Reading
Discussion Questions

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Typical roles of social workers in end-of-life

Advance directives, living will

Treatment options

Palliative care

Hospice

Legacy planning

Relocation

Finances

Assessment of capacity for decision-making

Education (patient, family, public)

Policy

Question: Why do we do any of the above activities?

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Death with Dignity

Many laws in the US use this phrasing

Oregon was the first state to pass this legislation

Washington law passed in 2009, updated in 2023

NOT well-known

Name is problematic

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Medical Aid In Dying (MAID)

MAID is the current phrasing

NEVER “suicide” or “euthanasia”

A prescribing provider provides a prescription for a life-ending medication when patients meet state criteria, such as 6-month prognosis, state resident

Kozlov et al. (2022): 62% of people with MAID medication over the past 23 years died after ingesting the medication

WA DOH (2024): 81% of people who received the medication In WA in 2023 died after ingesting the medication

70% diagnosed with cancer

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MAID and hospice

Hospice provides supportive services at EOL

6-month prognosis usually required

Covered by Medicare

Manages comfort meds–to what extent?

Many hospices are philosophically opposed to assisting with MAID, but legally required to inform in WA

Often cannot ingest MAID medication on site or with hospice workers

86% of MAID deaths in WA in 2023 were enrolled in hospice (WA DOH, 2024)

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Legal landscape

Legal in 10 states + DC with 20 others considering laws in 2024 (Pope, 2024)

2 do not have residency requirements

Assisted Suicide Funding Restriction Act prohibits funding

Legal concern is mostly around homicide

Self administration is key

Threats from SCOTUS/Federal level include classifying MAID as suicide

My experience developing Sagebrush Crossing

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Voluntarily Stopping Eating and Drinking (VSED)

VSED refers to people who cannot participate in MAID

Can be supported by EOL organizations and social workers

“VSED as bridge to MAID”

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Barriers

Lack of awareness

Disability rights

Religious beliefs

Lack of providers

Locatoin

Cost

Stereotypes

Lack of physical space to ingest medication

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Disability rights: Will MAID be forced on us? Remember, the condition permitting MAID is a terminal condition, not an ongoing disability

Religious beliefs of community or healthcare system: Religiously-affiliated healthcare entities represent 40-60% of care in WA. People w/in a community of faith may wish to pursue MAID but have judgment or fear from their community

Lack of providers willing to prescribe–prescribers can refuse for any reason, some laws require them to be physicians (very rare), some areas require extensive travel. My friend and former SSW colleague had cancer and had to find provider on the W Side to Rx his meds because no oncology provider here would help him

Location: EWA has 22% of the population but only represented 11% of MAID deaths in 2022

Cost: $650+, not covered by insurance except in OR and CA. 89% of MAID deaths in WA in 2023 had health insurance (WA DOH, 2024)

Stereotypes

Jack Kevorkian: Gave medication to many people who might not meet requirements, incarcerated for homicide

Public speculation about what a deceased person would have wanted (heard at many state public hearings on the topic): “My father lived 9 years after his 6-month diagnosis and this would have robbed us of 8 years with him”

Physical space: People have used parks, hotels or other public locations when they don’t have supportive landlord or family; One aspect of CA’s DWD law is that hotels are considered public spaces, for some reason; People have used parks, hotels or other public locations when they don’t have supportive landlord or family; <5 people die each year using MAID in E. Wa somewhere other than their home, rate is much higher on West Side due to larger population. 88% of deaths in WA died at home/private residence (WA DOH, 2024)

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Social work values & ethics

Dignity and Worth of a Person

Social Justice

Self Determination

Informed Consent

Concerns listed in 2024 WA DOH MAID report: Less able to engage in meaningful activities (83%), loss of autonomy (81%), loss of dignity (57%), burden on others (51%), loss of control of bodily functions (46%), inadequate pain control (41%), financial implications of treatment (10%)

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Social work roles and MAID

Micro

Enroll people in hospice

Locate ingestion sites

Arrange for remains removal

Assist with client wishes for body

Arrange death doula

Mezzo

Advocate for local healthcare systems participation

Educate local community

Macro

Advocate for laws, law updates at state or federal level

Can request hearings as a resident of a specific county

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Alternatives

US social workers should probably avoid these options while laws could be in flux

Travel to access MAID in other states and other countries

Final Exit Network provides instructions for how to hasten death and is not the same as MAID

Countries with different requirements, such as mental illness, have social justice issues

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Sources & Resources

Kozlov, E., Nowels, M., Gusmano, M., Habib, M. and Duberstein, P. (2022), Aggregating 23 years of data on medical aid in dying in the United States. J Am Geriatr Soc, 70: 3040-3044.

Peres, J. (2016). A time and place: The role of social workers in improving end-of-life care. Journal of Social Work in End-of-Life & Palliative Care, 12(3), 185–194.

Pope, T.M. (2017). Voluntary stopping eating and drinking (VSED) to hasten death: May clinicians legally support patients to VSED? BMC Medicine, 15, 187.

Washington State Department of Health. (2024). Death with Dignity Act, 2023 [Annual report].

End of Life Washington: https://endoflifewa.org/

Sagebrush Crossing: www.sagebrushcrossing.org

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Discussion questions

Do you think your agency would support helping people access MAID? Why or why not?

Do you think your personal healthcare provider would assist you if you asked about resources to participate in MAID? Are you willing to ask them what their policy is about MAID?

Do you have an advance directive or do your loved ones know your wishes at end of life?

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