What to Expect from MAID

Medical aid in dying (MAID) is a clinical procedure that allows patients to receive medication from a physician to hasten their death. Since patients need to have a prognosis of 6 months or less to live and are required to self-administer the medication as part of the eligibility criteria, physical and physiological issues have the potential to affect the process when the patient decides they’re ready to take the medication. Most notably, since many patients are in a physically weakened state within the final months of their lives, it can be difficult for them to administer the medication on their own or administer it correctly. 

Some patients may have difficulty swallowing, either due to general weakness or the presence of an esophageal obstruction. Depending on the route of administration, such as by mouth or using a syringe, accidental spillage of the mixture may occur when attempting to self-administer. Taking a lower dose than prescribed has the potential to cause discomfort and may not result in immediate death. Assuming that the patient can administer the medications despite the physical challenges, physiological issues can also arise based on the status of the patient’s health and any associated symptoms they may experience due to chronic disease or side effects from other medications. Additionally, patients who have been taking opiates and antianxiety medication for pain and distress for a significant period of time often have developed a tolerance to the drugs used in MAID, which can prolong the time to death.

Digestion issues can significantly affect the absorption rate of aid-in-dying medications and reduce the lethality of the dose. Most of the medications that are prescribed in a MAID protocol are absorbed into the duodenum, which is part of the small intestine. For absorption to occur, the stomach has to empty and transfer its contents to the duodenum, which is delayed in patients with gastroparesis and other digestive disorders. Issues such as constipation and diarrhea can also affect absorption, particularly if the patient is unable to successfully self-administer the medication rectally. 

Sources

“Medical Aid in Dying: An Overview of Care and Considerations for Patients With Cancer”. Oncology Nursing Society. https://www.ons.org/publications-research/cjon/26/6/medical-aid-dying-overview-care-and-considerations-patients-cancer 

“Gastroparesis”. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/gastroparesis/symptoms-causes/syc-20355787

According to a 2018 study, the most common reason patients request medical aid in dying (MAID) is disease-related symptoms. This was most prominent among patients with cancer or malignancies compared to patients with neurological diseases or end-stage organ failure. Since these patients have already experienced symptoms such as pain or nausea, they know that there is a likelihood these symptoms will increase in severity and discomfort as death becomes more imminent. Patients who had requested MAID but did not utilize it during the study indicated that the fear of future suffering was their reason for making the request. 

Although disease-related symptoms are the most common reason, there are other reasons why patients may request MAID. These reasons can include the desire to maintain control and autonomy and concerns about the quality of life, including loss of independence, loss of function, lack of mobility, loss of the ability to speak or communicate, and the inability to participate in meaningful activities. Whether patients request MAID to prevent further suffering, to prevent loss of function, or for similar reasons, the prominent theme that emerges is that most people want to experience a death that aligns with their preferences. And they want to have the opportunity to decide on the timing and manner of their death while they still can. 

Sources 

“Reasons for requesting medical assistance in dying”. National Library of Medicine. https://pmc.ncbi.nlm.nih.gov/articles/PMC6135145/ 

“Experiences and perspectives of people who pursued medical assistance in dying”. National Library of Medicine. https://pmc.ncbi.nlm.nih.gov/articles/PMC6135118/ 

“Medical Assistance in Dying (MAiD): A Descriptive Study From a Canadian Tertiary Care Hospital”. American Journal of Hospice and Palliative Medicine. https://journals.sagepub.com/doi/abs/10.1177/1049909119859844

In the United States, current legislation does not permit family members, surrogates, healthcare agents, conservators, or other decision-makers to request medical aid in dying (MAID) on behalf of the patient. Additionally, although part of the eligibility criteria for MAID indicates that the patient must be able to make decisions regarding their care, the patient cannot include their request for MAID in their advance directive. The patient must request MAID following the specific directions and criteria outlined in the law, reflecting that the decision is voluntary and an act of autonomy. 

While this criterion aims to safeguard against misuse or coercion in the practice of MAID, it can inadvertently limit end-of-life choices for certain patient populations. Advocates have voiced concerns that these criteria may exclude individuals with disabilities, especially those with cognitive impairments. Despite their ability to express preferences, these individuals might not have their wishes acknowledged due to the perception that their disabilities affect their decision-making capacity. To address this, advocates propose considering supported decision-making as an alternative to surrogate decision-making, promoting increased accessibility to MAID.

In supported decision-making, the patient maintains their autonomy and ability to share their preferences with a supported decision-maker to establish that they have the capacity to make decisions regarding their care. This differs from surrogate decision-making, which grants the surrogate the full authority to make decisions on behalf of the patient. Currently, Colorado, Washington, and the District of Columbia are the only jurisdictions in the U.S. that have enacted legislation addressing both supported decision-making and MAID. However, how these legislations intersect in end-of-life settings remains to be seen since supported decision-making usually applies in other contexts, such as pain management. For now, MAID will only remain accessible to patients who can initiate and complete the request process independently within the context of the current eligibility criteria. 

Sources

“End of Life Option Act”. Sutter Health. https://www.sutterhealth.org/patient-resources/records-planning/end-of-life-option 

“Supported Decision Making Program”. Administration for Community Living. https://acl.gov/programs/consumer-control/supported-decision-making-program 

“Supported Decision-Making and Merciful Health Care Access: Respecting Autonomy at End of Life for Individuals with Cognitive Disabilities”. Washington and Lee Law Review. https://scholarlycommons.law.wlu.edu/cgi/viewcontent.cgi?article=4813&context=wlulr

Psychiatrists have a crucial role in medical aid in dying, assessing the patient’s mental health and evaluating their decision-making capacity. Since depression and other psychiatric disorders can impair a patient’s ability to make sound decisions, these evaluations are necessary to ensure that there aren’t any underlying mental health concerns that may influence the patient’s decision to choose medical aid in dying. It is important to note that a psychiatric evaluation is not always mandatory in states where MAID is authorized and is typically conducted when the physician holds concerns regarding the patient’s competency and capacity. 

When psychiatrists are involved in a request for MAID, they work in collaboration with the patient’s care team to ensure that the patient is fully aware of their alternative options and the consequences of their decisions. Due to the diverse array of perspectives and sensitivity regarding MAID, some psychiatrists may perceive this end-of-life decision as an ethical or moral dilemma and may be uncomfortable with their involvement in the process. Additionally, some psychiatrists may feel that the practice of MAID is contradictory to their code of ethics and may struggle with their personal biases.

Sometimes psychiatrists can provide additional counseling and support to patients who have requested MAID. This is typically more common among patients who struggle with psychological distress but are deemed to have the competence and capacity for decision-making. Options such as psychotherapy, motivational interviewing, and other interventions can help patients explore perspectives regarding their quality of life, preparatory grief, or their overall experience in relation to their prognosis. Since the patient’s loved ones are often affected by the patient’s decision to pursue MAID, some psychiatrists may help patients explore their relationships and the impact of their decision or provide additional support to the patient’s family and loved ones. 

Sources

“Role of Psychiatrists in Assisted Dying: A Changing Trend”. Psychiatry Online. https://psychiatryonline.org/doi/10.1176/appi.ajp-rj.2016.110902 

“Medical Assistance in Dying: Ongoing Challenges for Psychiatrists”. Psychiatry Advisor. https://www.psychiatryadvisor.com/features/medical-assistance-in-dying-ongoing-challenges-for-psychiatrists/ 

“Medical Aid in Dying: Ethical and Practical Issues for Psychiatrists”. Psychiatric Times. https://www.psychiatrictimes.com/view/medical-aid-dying-ethical-and-practical-issues-psychiatrists

Medication regimens for medical aid in dying (MAID) are developed explicitly in lethal combinations to ensure that patients die. Still, there are rare incidents involving complicated or prolonged deaths. These rare incidents can occur if the regimen includes medications not typically recommended for MAID, such as benzodiazepines or opioids, or if the provider has overestimated the lethality of the prescribed medicines in terminally ill patients. In these instances, the most common complications that can occur are failure to induce coma, awakening from the coma, or death that takes longer than anticipated. 

In some cases, complications may occur due to symptoms associated with the patient’s condition. The presence of symptoms that prevent proper medication absorption or interfere with self-administration can indicate that complications may occur. While these complications don’t prevent the patient from dying, they can delay or stop the dying process from progressing as intended (for example, the patient may remain awake after they were expected to become unconscious.) Common symptoms associated with MAID complications include gut issues and difficulty swallowing. Other factors include obesity, sedative tolerance, substance use, and difficulty following instructions. Additionally, young patients with a healthy cardiovascular system may have an increased risk of prolonged death since they are typically more resilient and resistant to medications that are toxic to the heart.

Although the patient’s self-administration of the MAID medication regimen is part of the eligibility criteria for patients in the United States, it has been suggested that self-administration is associated with MAID complications. Potential complications of self-administration include difficulty administering medications with a large syringe (for example, through a nasogastric or rectal tube) or difficulty taking the drugs due to their unpleasant taste. Since providers can only prescribe medications for MAID and cannot legally administer them, patients considering this end-of-life option are encouraged to discuss their concerns surrounding potential complications and how to avoid them. While it should be emphasized that complications and prolonged deaths are rare, dedicating additional time to planning and preparing for MAID can help patients and their loved ones feel reassured and at peace before administering the MAID drugs.

Sources

“Spain will become the sixth country worldwide to allow euthanasia and assisted suicide”. The BMJ. https://www.bmj.com/content/372/bmj.n147/rr-0 

“Clinical Problems with the Performance of Euthanasia and Physician-Assisted Suicide in the Netherlands”. The New England Journal of Medicine. https://www.nejm.org/doi/full/10.1056/nejm200002243420805 

“Factors for Prolonged Deaths (Red Flags)”. Academy of Aid-in-Dying Medicine. https://www.acamaid.org/courses/redflags 

“Medical Aid in Dying: When Legal Safeguards Become Burdensome Obstacles”. The ASCO Post. https://ascopost.com/issues/december-25-2017/medical-aid-in-dying-when-legal-safeguards-become-burdensome-obstacles/ 

“Provision of medical assistance in dying: a scoping review”. BMJ Open.https://pmc.ncbi.nlm.nih.gov/articles/PMC7348461/

The most common diagnoses of patients who request medical aid in dying (MAID) include cancer, neurodegenerative diseases such as ALS and dementia, respiratory diseases such as COPD, and heart disease. Among these patient populations, patients with cancer are the most likely to request MAID; 74% of patients across 9 jurisdictions were found to have a cancer diagnosis at the time of the request. Since many patients fear the loss of autonomy, poor quality of life, and inability to care for themselves at the end of life, they may consider MAID as a way to retain control and achieve a death that aligns with their values and preferences. 

A study examining 18 years of data pertaining to patient utilization of MAID in Oregon demonstrated similar findings regarding patients diagnosed with cancer and other forms of terminal illness. These findings were based on 991 patients who died following self-administration of a MAID medication regimen. The most common diagnoses were:

• Cancer: 762 patients (77.1%)
  • Lung cancer: 177 patients (17.9%)
  • Breast cancer: 73 patients (7.4%)
  • Pancreatic cancer: 63 patients (6.4%)
  • Colon cancer: 61 patients (6.2%)
  • Prostate cancer: 40 patients (4.0%)
  • Ovarian cancer: 36 patients (3.6%)
    
• Other diagnoses: 312 patients (31.6%)
  • Amyotrophic lateral sclerosis: 79 patients (8.0%) 
  • Respiratory disease: 44 patients (4.5%)
  • Cardiac disease: 26 patients (2.6%)
  • HIV/AIDS: 9 patients (0.9%) 
  • Other illnesses: 68 patients (6.9%)
  • Unknown: 3 patients 

While these findings provide insight into chronic disease prevalence among patients requesting MAID, it is important to consider that these are generalizations drawn based on limited access to MAID in the United States. Although it helps in conceptualizing the most common diagnoses among patients who request assistance, it remains challenging to fully quantify how these percentages might shift if MAID were an approved practice nationwide. Another important factor to consider is that patient utilization and access to MAID may vary based on insurance coverage, income or patient eligibility. In instances where MAID is financially prohibitive to patients or they aren’t eligible, their diagnoses are not represented in these findings.

Sources

“Medical Aid in Dying: Ethical and Practical Issues”. Journal of the Advanced Practitioner in Oncology. https://pmc.ncbi.nlm.nih.gov/articles/PMC10184842/ 

“Cancer Patients Most Likely to Use Medical Aid in Dying”. Cancer Therapy Advisor. https://www.cancertherapyadvisor.com/news/cancer-patients-most-likely-to-use-medical-aid-in-dying/ 

“Characterizing 18 Years of the Death With Dignity Act in Oregon”. JAMA Network. https://pmc.ncbi.nlm.nih.gov/articles/PMC5824315/

The average cost of medical aid in dying (MAID) varies based on the state where the patient resides and whether they have insurance coverage. Generally, the anticipated expenses associated with MAID arise from fees for consultations or office visits with healthcare providers and prescriptions for aid-in-dying medications. State-funded and private insurance plans in Hawaii, Oregon, and California cover costs for medication and consultations related to MAID according to specific criteria defined by end-of-life acts in those states. 

Uninsured patients have to pay out-of-pocket expenses to receive MAID. Patients who have federally funded insurance such as Tricare and Medicare are also subject to these expenses since the Assisted Suicide Funding Restriction Act (ASFRA) prohibits the use of federal funds to cover this end-of-life option. This restriction is often expensive for out-of-pocket payers since multiple consultations and office visits are typically required to meet eligibility criteria, and prescription medication costs frequently fluctuate. For example, one patient in California owed $2,100 in out-of-pocket expenses due to the cost of consultations with physicians ($1400) and aid-in-dying medications ($700). These costs are nearly comparable to the projected cost of MAID in Ontario, Canada, although these projections reflect a simplified process with fewer healthcare consultations. 

In the United States, patients requesting MAID need a minimum of two consultations with a physician. However, additional consultations can be required to evaluate the patient’s competency and capacity to make decisions regarding their care. Additionally, the cost of medications can vary based on what the physician prescribes and can quickly become financially prohibitive. For example, the price of secobarbital (Seconal) once the most frequently prescribed aid-in-dying medication, increased significantly when Valeant Pharmaceuticals International acquired rights to market the drug in 2015. The once affordable medication can now cost over $4000 for a lethal dose, often making it challenging for patients to afford. Alternative medications or combinations of medications can cost considerably less. However, these medicines may increase physical distress and/or extend the dying process. Shortages of these medications can also contribute to increased costs. 

Sources 

“Our Care, Our Choice Act”. HMSA. Retrieved from https://prc.hmsa.com/s/article/Our-Care-Our-Choice-Act-prc 

“Opinion: Medical aid in dying was a blessing for my husband. But a federal law makes it inaccessible for millions of Americans”. CNN. Retrieved from https://www.cnn.com/2022/09/03/opinions/medical-aid-in-dying-inaccessible-fairchild/index.html 

“Cost estimate for Bill C-7: Medical Assistance in Dying”. Office of the Parliamentary Budget Officer. Retrieved from https://qsarchive-archiveqs.pbo-dpb.ca/web/default/files/Documents/Reports/RP-2021-025-M/RP-2021-025-M_en.pdf
 
“Aid-in-dying medications can run from $500 to $4,000 in Colorado”. The Denver Post. Retrieved from https://www.denverpost.com/2017/12/14/colorado-aid-in-dying-medications-cost/

Although most aid-in-dying experts recommend that an individual taking medical aid in dying (MAID) drugs shouldn’t be alone at the time of administration, there are no specific indications of who should be present. Understandably, many people choose to have their loved ones present when they self-administer their MAID drugs since it ensures they are surrounded by the people who matter the most to them before their death. Having loved ones present also provides one more opportunity for them to share final sentiments or achieve some closure before the death occurs. 

Some individuals don’t have family, friends or loved ones who can be present with them when they take their MAID drugs. In those circumstances, the general recommendation is to ask hospice staff or clinicians to be present. While healthcare professionals cannot assist the individual with administering the drugs, they can provide support and comfort in a manner that is consistent with their personal values and professional ethics. However, this can vary based on the healthcare facility’s or hospice provider’s policy. Some advocacy organizations also help match individuals pursuing MAID to an aid-in-dying volunteer or a death doula who is willing to be present when the medication is taken.

While some dying persons may prefer to die alone, it is generally not recommended with MAID. Since many people who opt for medical aid in dying are weak due to disease progression, they may have difficulty preparing the medication or following the proper protocols. Additionally, if the medications are taken incorrectly or the dying process does not proceed as intended, the individual may need additional care or support. The presence of at least one other person can ensure that the MAID process is completed appropriately and help reduce the possibility of complications. 

Sources

“Physician Aid-in-Dying”. UC San Diego Health. https://health.ucsd.edu/patients/aid-in-dying/ 

“The Nurse’s Role When a Patient Requests Medical Aid in Dying”. American Nurses Association. https://www.nursingworld.org/globalassets/practiceandpolicy/nursing-excellence/ana-position-statements/social-causes-and-health-care/the-nurses-role-when-a-patient-requests-medical-aid-in-dying-web-format.pdf 

“Some Hospice Medical Aid in Dying Policies Require Staff to Leave Room”. Relias. https://www.clinician.com/articles/some-hospice-medical-aid-in-dying-policies-require-staff-to-leave-room

The length of time until death after ingesting medical aid-in-dying (MAID) medications can vary based on the progression of the patient’s disease and their ability to absorb the medicine. Individuals who are further along in the progression of their terminal illness may die more quickly after taking the medication due to the disease’s impact on their physical condition. Similarly, individuals who have difficulty absorbing medicines due to their illness may experience an extended time before death. Given all these factors, death may occur as soon as 5 minutes or even 18 hours after the person takes the medicine. 

The length of time to death can also vary based on the prescribed medications. Some medications are less effective in younger patients or those with stronger hearts when compared to older adults or elderly patients. Physicians can prescribe different medications or combinations to reduce the likelihood of a prolonged dying process if they suspect a patient may be more resilient. However, even in scenarios involving extended lengths of time before death, most patients will fall asleep or become unconscious within the first 5 to 10 minutes after taking the designated medications. 

A recent study found that the median time between ingesting the medicines and death was 6 minutes, and the extended time was 1 hour and 27 minutes. In most instances, patients died within 3 to 15 minutes. The length of time to death also varied based on the medications patients received. For example, patients who self-administered lidocaine experienced a prolonged time until death compared to those who did not receive lidocaine as part of their medication protocol. 

Being mindful of concerns surrounding prolonged time to death and the emotional impact it can have on family members and loved ones, patients should always discuss which medication protocol may be the best fit for their needs and preferences.

Sources
“The Doctors Who Invented a New Way to Help People Die”. The Atlantic. https://www.theatlantic.com/health/archive/2019/01/medical-aid-in-dying-medications/580591/

Many patients choose to take aid-in-dying medications in their homes or private residences. It is also possible for MAID to be performed in a care facility, but this often varies based on state laws. Data from Oregon has shown that 90% of patients who choose MAID will die at home. This option allows patients to die peacefully in a familiar environment with loved ones nearby. 

Patients who decide to perform MAID at home typically dedicate time to preparation and planning. Some prefer to prepare their space and make it as comfortable as possible before they take the prescribed medications. They may plan together with a trusted caregiver to ensure that their needs are taken care of before taking the next steps, or they may opt to invite loved ones over to spend time with them during the process. Many patients who request MAID are already receiving home hospice care, so they may receive additional support and resources to help them relax before the procedure. Patients may also request that their physician be present when they take the medication.

In some situations, patients may take their aid-in-dying medications in a facility such as a nursing home instead of in their home. As an example, some patients who request aid in dying live in skilled nursing or assisted living facilities due to the extent of their condition and the need for care. Many of these facilities prohibit aid in dying on the premises due to legal, medical and ethical concerns. However, there are some long-term care facilities that do allow patients to take aid-in-dying medications if the facility is classified as a private residence. Patients who may be considering aid in dying and are entering long-term care should be aware of the facility’s policies in advance.

Sources

“Physician-Assisted Death and Long-Term Services and Supports”. National Academies of Sciences, Engineering, and Medicine. https://nap.nationalacademies.org/read/25131/chapter/7#103 

“What is Medical Aid-In-Dying?”. Dying Right North Carolina. https://dyingrightnc.org/faq/ 

“Clinical Criteria for Physician Aid in Dying”. Journal of Palliative Medicine. https://pmc.ncbi.nlm.nih.gov/articles/PMC4779271/

Current safeguards to prevent misuse of medical aid in dying (MAID) include:

• Fulfilling all eligibility criteria.
• Submitting multiple requests.
• Meeting with numerous healthcare professionals.
• Evaluating the patient’s competency and capacity to make a decision.

Although eligibility criteria for MAID are sometimes regarded as strict, they are necessary to ensure that this practice isn’t easily accessible to individuals who might misuse the process in some way.

Before any provider will consider a request for MAID, interested patients must meet the following criteria: 

• The patient must be an adult of at least 18 years of age or older 
• The patient must be terminally ill with a prognosis of six months or less left to live. 
• The patient must be capable of making decisions regarding their care
• The patient must be able to administer the aid-in-dying medications to themselves. 

The patient must meet all the criteria to proceed with the process. It is important to note that there are different methods for assessing patient competency and the capacity to make a decision. Some physicians make these assessments during their initial appointment to discuss MAID with the patient. Still, others may refer to a mental health provider for a formal and validated evaluation. The definition of capacity varies by state, as do the requirements for consulting with a mental health provider regarding MAID. In some states, this consultation is mandatory if there is any indication of a psychiatric disorder. In other states, it is only required if the psychiatric condition may impair the patient’s ability to make a decision. 

Throughout the process, the patient will meet with multiple healthcare professionals. These can include their prescribing physician, another consulting physician and a mental health professional for a capacity evaluation. In addition to completing these consultations, patients must submit multiple requests in different formats. This requirement also varies by state but can involve submitting a specific number of written requests and acknowledgments in addition to verbal requests within a designated period. For example, California requires patients to make two verbal requests for aid-in-dying medications with at least 48 hours between the requests. Patients must also complete an aid-in-dying request form from the Medical Board of California, which the patient and two witnesses must sign.

Sources

“Medical Aid in Dying”. Compassion & Choices. https://compassionandchoices.org/our-issues/medical-aid-in-dying/ 

“Assessing Competency in Aid-in-Dying Patients”. MedPage Today. https://www.medpagetoday.com/meetingcoverage/aapl/75971 

“Medical Aid in Dying: Ethical and Practical Issues”. Journal of the Advanced Practitioner in Oncology. https://pmc.ncbi.nlm.nih.gov/articles/PMC10184842/ 

“FAQs: End of Life Option Act at UCSF”. UCSF Health. https://www.ucsfhealth.org/education/faq-end-of-life-option-act-at-ucsf

A patient’s request for medical aid in dying (MAID) can be denied if they do not meet the eligibility criteria and demonstrate the capacity to make decisions in their own care. Similarly, even if the eligibility criteria and capacity requirements are met, the patient’s physician is not required to approve the request or prescribe the designated medications to aid the patient’s death. Therefore, residence in a state that authorizes MAID is not a guarantee that the patient will receive approval of their request. 

It is important to understand that although MAID is a legalized medical practice in multiple states, physicians are not required or obligated to provide it. For example, the End of Life Options Act (SB 128) allows California residents to request MAID if they meet the criteria but also indicates that participation is voluntary for all parties involved including patients, physicians, and healthcare staff. Some physicians are uncomfortable with providing MAID because they believe that it isn’t aligned with their medical ethics code, their values in relation to life, or their religious beliefs. 

Another example of unique circumstances that may cause MAID to be denied can be observed in Washington State’s Death with Dignity Act. In Washington State, healthcare facilities have the right to prevent pharmacists and providers from participating in the act. Participation can be prevented if the facility provides written notice to the general public and practicing providers on the premises to make them aware that MAID is prohibited. In these scenarios, the impacted providers are still allowed to determine that the patient has a terminal prognosis, share information about the Washington Death with Dignity Act, and give the patient a referral to another provider that may be able to offer MAID. 

Sources

“The Facts about Medical Aid in Dying”. Compassion & Choices. https://compassionandchoices.org/resource/the-facts-about-medical-aid-in-dying/ 

“Physician Aid in Dying”. UC San Diego Health. https://health.ucsd.edu/patients/aid-in-dying/ 

“When Patients Choose to End Their Lives”. The New York Times. https://www.nytimes.com/2021/04/05/well/live/aid-in-dying.html 

“Frequently Asked Questions About Death With Dignity”. Washington State Department of Health. https://doh.wa.gov/data-and-statistical-reports/health-statistics/death-dignity-act/frequently-asked-questions-about-death-dignity

Medical professionals determine eligibility for medical aid in dying according to a set of criteria based on the clinician’s assessment of the patient’s ability to understand the intricacies of making a decision and its potential consequences. The criteria for eligibility and capacity must be met along with a physician’s approval before a patient can receive medical aid in dying (MAID). Eligibility and capacity are also paired with safeguards to ensure that patients who have requested MAID are aware of alternative options and their right to rescind their request if they change their minds. 

In order to be eligible to receive MAID, patients must meet each of the following four criteria. 

• The patient must be an adult of at least 18 years of age or older 
• The patient must be terminally ill with a prognosis of six months or less left to live. 
• The patient must  be capable of making decisions regarding their own care
• The patient must be able to administer the aid-in-dying medications to themselves. 

Some states require that the patient’s prognosis must be determined by two physicians, although this can vary by jurisdiction. The requirement that the patient must be able to make their own healthcare decisions acknowledges the role of capacity when requesting MAID. 

There are different ways to determine general psychological capacity, such as the use of validated assessments like the MacArthur Competence Assessment Tool for Treatment. Although there are a number of validated capacity assessments available, there aren’t any that have specifically been developed for determining capacity for MAID. Some of the main elements associated with patient capacity in assessment tools include 

• Understanding information and treatment relevant to their condition, 
• Awareness of the implications of their care circumstances along with the potential consequences of their decisions
• The ability to reason about the risks and benefits of these decisions,
• The expression of their decision. 

Additionally, clinicians can assess decision-making capacity through conversation with the patient, which can help to identify if the patient is exhibiting terminal delirium or symptoms of concurrent mental illness. 

Sources

“Medical Aid in Dying”. Compassion & Choices. https://compassionandchoices.org/our-issues/medical-aid-in-dying/ 

“Medical Aid in Dying: Ethical and Practical Issues”. Journal of the Advanced Practitioner in Oncology. https://pmc.ncbi.nlm.nih.gov/articles/PMC10184842/ 

“The influence of cognitive distortions on decision-making capacity for physician aid in dying”. International Journal of Law and Psychology. https://www.sciencedirect.com/science/article/abs/pii/S0160252720300868?casa_token=5m2p7hSm0AwAAAAA:aAHAXTNi92QkWU3QDbKN45eJ1wTlhUGrElGckYDVr0aynojThjMQypFHf4kX8UsO4xpvR9Mf 

“Assessment of capacity to give informed consent for medical assistance in dying: a qualitative study of clinicians’ experience”. CMAJ Open. https://pmc.ncbi.nlm.nih.gov/articles/PMC8084565/

Participation in medical aid in dying (MAID) is entirely voluntary. Patients interested in the procedure are informed by their providers that they may change their minds at any time and requesting MAID does not obligate them to follow through. Even if the prescription has been issued and the patient has the medication, they have the right to choose not to ingest it.

Providers’ duties that receive MAID requests vary by state, but the majority of processes have opportunities for the patient to change their mind. Providers who discuss requests for MAID with patients during their appointments dedicate time to assessing the patient’s decision-making capacity. They discuss alternatives with the patient to ensure that they’re aware of options they can consider instead of MAID. Throughout the process, the provider and respective staff are allowed to offer opportunities for the patient to rescind their request. 

In California, the process for requesting and receiving MAID includes clearly defined opportunities to rescind the request. Patients need to make three requests for MAID, including two verbal requests and one written request. The two verbal requests must be made at least 15 days apart, which can serve as an opportunity for the patient to change their mind before moving forward with the other requests. The patient will then have to complete multiple consultations regarding their request, which provides additional opportunities to rescind the request if desired. Additionally, the provider is required to discuss expectations of how to store and self-administer the medication and also includes another opportunity for the patient to change their mind prior to the authorization of the prescription. 

It has been estimated that one-third of patients eligible for MAID choose not to take the medication after receiving their prescription. Among these patients, the driving factors supporting their change of mind revolve around a reduction in the fear of losing control and an increase in autonomy. Regardless of when the patient has made the request for MAID or how much progress they have made in the process for approval, participation is always voluntary and patients are not forced to proceed with the process if they decide that they are no longer interested. 

Sources

“Medical Aid in Dying”. Compassion & Choices. https://compassionandchoices.org/our-issues/medical-aid-in-dying/ 

“Physician Aid-in-Dying”. UW Medicine: Department of Bioethics and Humanities. https://depts.washington.edu/bhdept/ethics-medicine/bioethics-topics/detail/73

“California End of Life Option Act (EOLOA)”. UCLA Health. https://www.uclahealth.org/patient-resources/support-information/patient-education/california-end-life-option-act-eoloa 

“When Patients Choose to End Their Lives”. New York Times. https://www.nytimes.com/2021/04/05/well/live/aid-in-dying.html

Healthcare professionals are not allowed to assist paralyzed patients with the administration of aid-in-dying medications since the eligibility criteria for MAID indicate that patients must be able to self-administer the medication. Even if the paralyzed patient has provided informed consent and demonstrates decision-making capacity, their inability to administer the medication themselves would make them ineligible for MAID. If a healthcare professional, such as a nurse, were to assist in administering the medication, they would be deemed liable for the patient’s death since their direct participation with the intent to hasten death would categorize this practice as euthanasia, which is illegal in the U.S., instead of MAID. 

Requirements based on the patient’s ability to self-administer have proven challenging for patients with conditions such as ALS, multiple sclerosis, spinal cord injuries, and Parkinson’s disease. In the earlier stages of these diseases, patients may still have the mobility and physical function necessary to self-administer aid-in-dying medications, but might not meet the criteria of a terminal prognosis with six or fewer months to live. As these diseases progress and patients begin to experience limitations in the ability to move their arms or swallow liquids and food, they might meet the criteria for the terminal prognosis, but are unable to meet the criteria for self-administration anymore. 

Additionally, some paralyzed patients may acquire the medications by meeting all of the criteria initially but then struggle with deciding when to self-administer. They realize that if they continue to wait, they risk becoming unable to take the medication on their own, but they also express that they are not emotionally or physically ready to die yet. Some patients prefer to delay taking their aid-in-dying medications to spend more time with their families or make the most out of the remainder of their time before their disease progression worsens. It’s a difficult choice for them to make since it may prevent them from dying according to their own preferences. 

Without the possibility of a healthcare professional to assist in the administration of medication, patients who are paralyzed or have disabilities have reduced access to MAID, even if they live in a state where it is authorized. The progression and limitations of their diseases often complicate their decision to move forward with pursuing MAID despite their ability to meet the eligibility criteria. As a result, activists continue to advocate for criteria and legislative changes that will be more inclusive to their community.

Sources

“Medical Aid in Dying & People with Disabilities”. Compassion & Choices. https://compassionandchoices.org/resource/medical-aid-dying-people-disabilities/ 

“A Fight to Die”. Bloomberg. https://www.bloomberg.com/news/features/2021-12-17/death-with-dignity-right-to-die-laws-leave-patients-with-impossible-choice 

“An ALS patient’s dilemma: End his own life, or die slowly of the disease?” NBC News. https://www.nbcnews.com/news/us-news/als-patient-s-dilemma-end-his-own-life-or-die-n993421