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Perspectives on Medical Aid in Dying: A Multifaceted Ethical Discussion

2024
MAiD
Ethics
In this Perspectives on the Science piece, we reflect on the complex ethical considerations surrounding Medical Aid in Dying, integrating insights from a recent multi-institutional journal club discussion.
Authors
Affiliations

Miller, David M.

Massachusetts General Hospital

Harvard Medical School

Brownell, Isaac

National Institutes of Health

Tchekmedyian, Vatche

Maine Health

Patel, Vishal A.

GW School of Medicine & Health Sciences

Kaufman, Howard L.

Massachusetts General Hospital

Harvard Medical School

Emerick, Kevin S

Mass Eye and Ear

Harvard Medical School

Featured Article


Ethics and Medical Aid in Dying: Physicians’ Perspectives on Disclosure, Presence, and Eligibility. DeCamp, Matthew, Julie Ressalam, Hillary D. Lum, Elizabeth R. Kessler, Dragana Bolcic-Jankovic, Vinay Kini, and Eric G. Campbell. 2023. Journal of Law, Medicine & Ethics 51 (3): 641–50. DOI: 10.1017/jme.2023.1001


Introduction

On February 2nd, 2024, the multi-institutional Society of Cutaneous Oncology (SoCO) Journal Club (JC) discussed the article titled “Ethics and Medical Aid in Dying: Physicians’ Perspectives on Disclosure, Presence, and Eligibility” published in Journal of Law, Medicine & Ethics. Participants included clinicians and researchers from Massachusetts General Hospital, Mass Eye and Ear, Brigham and Women’s Hospital, Dana-Farber Cancer Institute, George Washington Cancer Center, the National Institutes of Health, Columbia University Medical Center, University of Washington, Northwestern Medicine, Maine Health and the University of Sydney. The ensuing dialogue provided a diverse range of insights and opinions on the ethical complexities surrounding Medical Aid in Dying (MAiD). This Perspectives on the Science piece reflects the collective viewpoints of the authors post-discussion, distinct from the perspectives of other Journal Club members or their affiliated institutions. Here, we present an overview of the discussion focused on this contribution to the field.

Background

Overview and Evolution of Medical Aid in Dying

Medical Aid in Dying (MAiD), also known as physician-assisted death, is a practice that allows terminally ill or incurable patients to end their lives by taking prescription of lethal medications prescribed by a physician. Developments in MAiD over the years reflect medical advances, changing societal attitudes, and evolving ethical and legal frameworks.

Current Legalization Status

Between 2009 and 2021, ten US States or jurisdictions legalized MAiD, reflecting a growing acceptance of the practice (Table 1).28 The geographical spread of MAiD legalization across the country provides a clear illustration of its growing acceptance and the diverse legal interpretations it engenders.

Medical Aid in Dying (MAiD) Legalization Dates by State
State Legalization Date
Washington 3/5/2009
Montana 12/31/2009
Vermont 5/20/2013
California 6/9/2016
Colorado 12/16/2016
Washington, D.C. 2/18/2017
Hawaii 1/1/2019
New Jersey 8/1/2019
Maine 9/19/2019
New Mexico 6/20/2021

Table 1: States and jurisdictions with Medical Aid in Dying (MAiD) listed by legalization dates,

States Considering MAiD Legislation and Specific Cases

Thanks to legislative efforts nationwide, several other states are actively considering laws related to MAiD (Figure 1).

Figure 1: States or jurisdictions in blue have laws in place legalizing medical aid in dying; those in salmon have bills under consideration. States in which bills are not yet under consideration are in white. This table emphasizes the ongoing legislative efforts across the country.

The Massachusetts Medical Aid in Dying Bills (H.2246 and S.1331), which are currently under consideration, were reviewed as an example of how MAiD legislation is crafted with consideration of ethical, medical, and legal concerns. The bills outlines eligibility criteria, emphasizing mental capacity and terminal illness prognosis, and mandates a process that includes multiple patient requests, physician assessments, and a waiting period(Tables 2-3). Massachusetts House and Senate Medical Aid in Dying Bills provide comprehensive details.9,10

Key Inclusion and Exclusion Criteria for Bill H.2246 - An Act relative to end of life options
Criteria Description
Inclusion Adult resident of Massachusetts
Inclusion Diagnosed with a terminal illness with a prognosis of six months or less
Inclusion Mentally capable of making an informed decision
Exclusion Individuals with a guardian (indicating incapacity)
Exclusion Neither age nor disability alone qualify someone for MAiD

Table 2: This table lists the specific inclusion and exclusion criteria set forth in the Massachusetts House Medical Aid in Dying Bill. It highlights the stringent requirements for eligibility, emphasizing the bill’s focus on responsible and ethical implementation of MAiD.

Process Steps for MAiD in Bill H.2246 - An Act relative to end of life options
Step Description
Step 1 Initial oral request to attending physician
Step 2 Written request following a waiting period
Step 3 Confirmation of diagnosis and prognosis by two physicians
Step 4 Referral for counseling if necessary
Step 5 Mandatory waiting period after requests
Step 6 Prescription and self-administration of medication

Table 3: Outlining the step-by-step process prescribed in the Massachusetts MAiD Bill, this table demonstrates the comprehensive and deliberate approach required for MAiD implementation, from the initial request to the final administration of medication.

Comparative Analysis of MAiD Regimens

Originally characterized by the use of drugs like secobarbital and pentobarbital, MAiD now includes various drug regimens, such as DDMP, DDMP2, DDMA, and DDMAPh (Tables 4-6), each designed to ensure a peaceful and dignified end-of-life experience.These regimens demonstrate reflect the specialized nature of MAiD, with using lethal dosages that are significantly higher than typical therapeutic usesdose ranges.11 In many cases anti-nausea/pro-gastric motility drugs are provided hours before drinking the MAiD suspension.12

DDMP Regimen for MAiD
Medication DDMP Regimen Typical Therapeutic Dose
Diazepam 1,000 mg 2-10 mg, 1-4 times daily
Digoxin 50 mg 0.125 mg to 0.25 mg daily
Morphine 15,000 mg 15-30 mg every 4 hours as needed
Propranolol 2,000 mg 40 mg twice daily

Table 4: This figure compares the DDMP regimen for Medical Aid in Dying, highlighting the significant escalation in dosages compared to typical therapeutic doses, and showcasing their specialized use in MAiD.

DDMP2 Regimen for MAiD
Medication DDMP2 Regimen Typical Therapeutic Dose
Diazepam 1,000 mg 2-10 mg, 1-4 times daily
Digoxin 100 mg 0.125 mg to 0.25 mg daily
Morphine 15,000 mg 15-30 mg every 4 hours as needed
Propranolol 2,000 mg 40 mg twice daily

Table 5: This figure compares the DDMP2 regimen for Medical Aid in Dying compared to typical therapeutic doses.

DDMA & DDMAPh Regimens for MAiD
Medication DDMA Regimen DDMAPh Regimen
Diazepam 1,000 mg 1,000 mg
Digoxin 100 mg 100 mg
Morphine 15,000 mg 15,000 mg
Amitriptyline 8,000 mg 8,000 mg
Phenobarbital - 5,000 mg

Table 6: This figure illustrates the composition of the DDMA and DDMAPh regimens for MAiD, emphasizing their tailored approach to address specific patient needs and ensure both effectiveness and comfort.

It is important to note that data on the utility and side effects of specific regimens are limited, and there is a lack of consensus in the medical community regarding the optimal approaches for MAiD.12 Recent studies and reviews highlight this the evidence gap.13 They point to the need for further research into the pharmacokinetics and pharmacodynamics of these drugs at the high dosages used in MAiD. In the absence of objective evidence, practitioners and policymakers must rely on multidisciplinary expert opinions that incorporate clinical expertise, ethical considerations, and patient preferences.

Bridging the Gap: From MAiD’s Background to Ethical Considerations in Practice

Despite technical advances, legalizations, and growing societal acceptance of MAiD, there remain unmet needs in understanding and addressing the ethical complexities of this practice. The featured study, “Ethics and Medical Aid in Dying: Physicians’ Perspectives on Disclosure, Presence, and Eligibility” by DeCamp et al., aims to address this gap.1 By exploring physicians’ perspectives, this study sheds light on the ethical considerations that healthcare providers must navigate in the context of MAiD and end-of-life care.

Study Design

The study, conducted in Colorado, surveyed physicians likely involved in MAiD-related activities. Using a previously described sampling strategy,14 researchers identified physicians providing outpatient care to patients similar to actual MAiD patients. Surveys were distributed by mail.

Main Findings

The study revealed diverse opinions among physicians on MAiD. Key findings include varied attitudes towards disclosure of personal views on MAiD to patients, willingness to be present during MAiD drug ingestion, opinions on expanding MAiD eligibility, and the perceived utility of ethics consultations.

Discussion

These findings underscore the complexity of MAiD as a medical practice. They reflect a spectrum of ethical considerations, personal beliefs, and professional responsibilities that healthcare providers must navigate in the context of MAiD. During the February 2nd session, we conducted a survey to better understand the experience of members of the SoCO Journal Club. A subset of the questions in our survey were adapted from those used in the Colorado study. While a direct comparison is not feasible due to differences in survey design and population, this approach does provide an opportunity for contextual comparison, offering insights into the perspectives of SoCO Journal Club members in relation to those of the physicians surveyed in Colorado.

Professional Roles and Perspectives

SoCO Journal Club participants including Medical Oncologists, Head and Neck Surgeons/Surgical Oncologists, Surgical Dermatologists, Medical Dermatologists, Advanced Practice Providers, and Student Trainees. This diversity reflects varying degrees of engagement with patients sufferning from terminal cancers, as evidenced in Figures 2-3. However, given that MAiD is legally permitted in only a minority of U.S. states, only a select number of participants had personal experience with MAiD, as depicted in Figure 4.

Figure 2: Attendees at the February 2nd SoCO Journal Club were surveyed as to their professional role. The percentage of the total respondents (N = 20) is shown to the right of each bar.

Figure 3: Attendees were surveyed as to their experience with end-of-life care. The percentage of the total respondents (N = 20) is shown to the right of each bar.

Figure 4: Attendees were surveyed as to their experience with MAiD. The percentage of the total respondents (N = 20) is shown to the right of each bar.

Management of MAiD Cases

When asked about willingness to refer patients for MAiD, the vast majority of participants expressed conditional willingness, based on patient prognosis and quality of life considerations (Figure 5). In contrast, opinions on willingness to be presence during MAiD, were more split, highlighting the personal and ethical complexities of MAiD (Figure 6).

Figure 5: Attendees were surveyed as to their willingess to refer a patient for MAiD. The percentage of the total respondents (N = 18) is shown to the right of each bar.

Figure 6: Attendees were surveyed as to their willingess to be present patient when they took MAiD drugs. The percentage of the total respondents (N = 18) is shown to the right of each bar.

Eligibility and Ethical Considerations

The survey responses revealed a diverse range of opinions on expanding the eligibility criteria for MAiD, reflecting the complex ethical landscape of this practice (Figure 7). A significant majority of respondents supported considering MAiD for adults in persistent vegetative states, acknowledging the irreversible nature of these conditions and the ethical imperative of respecting patient dignity in such circumstances. Similarly, a substantial proportion showed openness to including adults with late-stage dementia, recognizing the progressive and debilitating nature of the disease and the challenges in honoring the autonomy and prior wishes of these individuals. The discussion highlighted the importance of individuals creating advanced directives while they are fully capable, ensuring that, should they later lose the capacity to make or communicate decisions, their desires for MAiD are clearly documented and can be honored.

The perspective on adults with intractable chronic pain was more divided, with just over half of the respondents in favor. This viewpoint underscores the role of physical suffering in MAiD eligibility and the potential limits of palliative care in providing relief. In contrast, a smaller group of respondents considered MAiD for adults with intractable psychiatric conditions, raising critical questions about mental health, decision-making capacity, and the subjective nature of suffering.

In regards to extending MAiD to children with terminal conditions, nearly half of the respondents advocated for this consideration. This stance introduces a delicate debate about pediatric care, emphasizing the need to balance the child’s best interests with ethical considerations around maturity, decision-making capacity, and parental or guardian involvement.

Figure 7: Attendees were surveyed as to which groups of patients, in addition to adults with terminal illnesses, might be considered in future amendments to MAiD bills. The percentage of the total respondents (N = 20) is shown to the right of each bar.

Comparing the survey results from our SoCO Journal Club with those from the Colorado physicians study reveals some interesting points, albeit with limitations in drawing concrete conclusions. In our survey, 80% supported MAiD for adults in persistent vegetative states, compared to 68% in Colorado. For adults with intractable chronic pain, our support was slightly higher (55%) than Colorado’s (46.3%). In the context of intractable psychiatric conditions, our survey a higher level of support (30%) compared to Colorado (15.7%). Concerning late-stage dementia, our survey indicated 70% support, versus Colorado’s 48.6%. For children with terminal conditions, we observed a marginally higher inclination (45%) compared to Colorado’s physicians (41.1%).

It is important to note, however, that these comparisons are limited by differences in survey methodology and settings. Our survey’s context, participant composition, and possibly even regional medical and ethical cultures might differ significantly from those in Colorado, restricting the extent to which we can make direct inferences or draw conclusive comparisons between the two datasets.

Implications for Practice and Policy

Ultimately, the findings from Colorado14 and our SoCO Journal Club survey illustrate the need for nuanced, carefully crafted policies that balance respect for patient autonomy with the protection of vulnerable populations. As MAiD continues to evolve, ongoing dialogue among clinicians, ethicists, patients, and policymakers is essential. This conversation should be informed by interdisciplinary perspectives and committed to understanding the intricacies of end-of-life care, ensuring that MAiD remains a compassionate and ethically grounded practice.

As SoCO clinicians care for patients with advanced cutaneous malignancies, we are often called upon to help patients with decision-making around treatment options and end-of-life strategies. As such, a thorough understanding of MAiD and the logistics involved are important for all physicians who see advanced skin cancer patients. Physicians with a comprehensive understanding of this topic can help drive critical thinking during the development of legislation and policy adoption and compassionately assist patients at a difficult point during the course of their advanced cutaneous malignancy.

Materials and Methods

This Perspectives on the Science piece was published using Quarto®. The survey was conducted using REDCap®.15 The figures depicting the survey data were created using R (version 4.0.0) and the tidyverse suite of packages,16 including ggplot2.17 Interactive figures were made with ggplot2 and plotly18. The image on the “Perspectives on the Science” page was created by the authors (DMM) using the rosemary package.19 GPT-4, a language model developed by OpenAI, was employed in the drafting and editing of this manuscript. GPT-4 provided assistance in manuscript structuring, and generation of content, ensuring a comprehensive and cohesive presentation of the research and discussion points.20

Bibliography

1.
DeCamp, M. et al. Ethics and Medical Aid in Dying: Physicians Perspectives on Disclosure, Presence, and Eligibility. Journal of Law, Medicine & Ethics 51, 641–650 (2023).
2.
Compassion & Choices. States or territories where medical aid in dying is authorized. (2024).
3.
Oregon Health Authority. Death with dignity act.
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Death with Dignity National Center. Death with dignity laws.
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Montana Department of Public Health and Human Services. Montana death with dignity act.
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California Department of Public Health. End of life option act.
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Colorado Department of Public Health & Environment. Colorado end-of-life options act.
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Massachusetts Legislature. An Act relative to end of life options. (2024).
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Massachusetts Legislature. An Act relative to end of life options. (2024).
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American Clinicians Academy on Medical Aid in Dying. Adding phenobarbital to the d-DMA and DDMA medication protocols for medical aid in dying. (2021).
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Worthington, A., Finlay, I. & Regnard, C. Efficacy and safety of drugs used for assisted dying. British Medical Bulletin 142, 15–22 (2022).
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Campbell, E. G. et al. Physicians Attitudes and Experiences with Medical Aid in Dying in Colorado: a Hidden Population Survey. Journal of General Internal Medicine 37, 3310–3317 (2022).
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Wickham, H. et al. Welcome to the tidyverse. 4, 1686 (2019).
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OpenAI. GPT-4: Language model. (2023).

Appendix

Abbreviations

DDMA, Diazepam, Digoxin, Morphine, Amitriptyline. DDMAPh, Diazepam, Digoxin, Morphine, Amitriptyline, Phenobarbital. DDMP, Diazepam, Digoxin, Morphine, Propranolol. DDMP2, Diazepam, Digoxin, Morphine, Propranolol. JC, Journal Club. MAiD, Medical Aid in Dying. REDCap, Research Electronic Data Capture. SoCO, Society of Cutaneous Oncology.

Disclosures

None of the authors have any relevant disclosures.

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Citation

BibTeX citation:
@article{miller,
  author = {Miller, David M. and Brownell, Isaac and Tchekmedyian,
    Vatche and Patel, Vishal A. and Kaufman, Howard L. and Emerick,
    Kevin S},
  publisher = {Society of Cutaneous Oncology},
  title = {Perspectives on {Medical} {Aid} in {Dying:} {A}
    {Multifaceted} {Ethical} {Discussion}},
  journal = {Journal of Cutaneous Oncology},
  volume = {2},
  number = {1},
  url = {https://journalofcutaneousoncology.io/perspectives/Vol_2_Issue_1/medical_aid_in_dying},
  doi = {10.59449/joco.2024.02.02},
  issn = {2837-1933},
  langid = {en}
}
For attribution, please cite this work as:
Miller, David M. et al. Perspectives on Medical Aid in Dying: A Multifaceted Ethical Discussion. Journal of Cutaneous Oncology 2,.