22.1 Introduction
Law and society research demonstrates that law in practice is often different than law on the books and that organizational policy matters for the construction of law. Laws are often vague, ambiguous, or silent on important matters, and so organizations subject to the laws may respond by creating policies that define terms, resolve ambiguities, or fill gaps.Footnote 1 Organizations that most directly shape health law include hospitals, health care systems, health insurance programs, pharmacies, and professional associations. When constructing policies, organizations mediate the impact of law and may even create the law if courts or legislatures later rely on the organization’s policies to decide legal questions, a process known as legal endogeneity.Footnote 2
This process has not been studied in the context of health care organizational policy about medical aid in dying (MAiD) laws in the United States. Since the mid-1990s, eleven US jurisdictions have legalized MAiD.Footnote 3 In the United States, MAiD is an end-of-life option wherein a competent adult patient with a terminal illness may voluntarily request a prescription medication that, when self-administered, will end their lives.Footnote 4 Although more Americans live in jurisdictions that have legalized this end-of-life option,Footnote 5 very few terminally ill individuals use MAiD.Footnote 6 Those individuals who choose MAiD tend to be white and highly educated.Footnote 7 Low use of MAiD could reflect preferences, but low use may also reflect lack of access, despite legalization.Footnote 8
Lack of access could be due, in part, to health care organizations’ responses to MAiD laws, where existing statutes may not adequately address eligibility and procedural questions about this end-of-life option and where hospitals and health systems may address ambiguity through policies that ultimately restrict access to MAiD. Restrictive policies can reflect organizational “opt out” of MAiD participation on behalf of the institution and affiliated health care providers. But even organizations that “opt in” can adopt policies that require providers to follow specific processes beyond what the law mandates, which may result in reduced access to MAiD. Hospitals and health systems can enforce compliance with organizational policy through employment contracts or medical staff privileges and medical staff bylaws, and thus private law choices and agreements mediate public laws.
This chapter builds on an ongoing study of health care organizations’ policies adopted in response to the legalization of MAiD in California in 2015 and highlights how despite the seeming success of “right to die” social movements in convincing voters and legislatures that MAiD should be legal, legalization of MAiD in the United States is mostly a “paper victory.” By this we mean that the “law appears to advance [an] agenda but in reality it does no such thing.”Footnote 9 In this case, the law on the books should result in individuals who meet statutory requirements being able to choose MAiD, but in practice, MAiD is often not an option at all.
This chapter proceeds as follows. First, we will briefly describe the data and methods of the parent study from which this chapter draws. Second, we will show how the text of the California MAiD statute ensures that few individuals will qualify for MAiD. Third, we will show how the implementation of the law also ensures that even fewer individuals qualify. In this section, we will focus on two health care organizations’ policies and demonstrate how they restrict access to MAiD for otherwise eligible individuals. We will conclude by discussing how MAiD in the United States is not a true victory for the “right to die” movement but is instead a “paper right.”
22.2 Data and Methods of Larger Study
The California legislature passed the End of Life Option Act (EOLOA) in 2015, effective 2016.Footnote 10 The EOLOA, like most other US MAiD laws, includes a provision that health care professionals and health care organizations can choose not to participate. Additionally, because the law is silent on several implementation questions, health care organizations can write their own policies on MAiD practices. Policymakers and scholars in California began researching how the law was implemented and after two years, recommended that health care organizations be more transparent about their policies.Footnote 11 In 2021, the legislature amended the Act, effective January 1, 2022, to require “health care entit[ies]” to “post on the entity’s public internet website the entity’s current policy governing medical aid in dying.”Footnote 12 This public regulation does not mandate a particular organizational policy, which preserves organizational autonomy and private ordering, but instead attempts to promote patient autonomy by mandating that patients have access to information that may be important to their medical and end-of-life decision-making. Adopting a requirement that health care entities be transparent about their EOLOA policy also makes it possible for researchers to collect and analyze the policies.
In March 2023, we obtained a list of all licensed health care entities in the state of California from the California Department of Health Care Access and Information.Footnote 13 We limited our focus to general acute care hospitals. We then went to each hospital’s website and searched for the hospital’s EOLOA policy. As we report elsewhere,Footnote 14 very few hospitals are compliant with the legal mandate to publicly post their EOLOA policies on their public-facing institutional website, but there is no enforcement mechanism for this EOLOA provision included in the statute. We analyzed available policies for whether organizations choose to participate in MAiD and whether organizations add restrictions to or conditions of participation for health care providers or patients that are not contained in the text of the law.
We report on an analysis of these policies elsewhere but will briefly summarize our main findings here.Footnote 15 We found that (1) organizational policies vary in how they restrict patient and provider participation in MAiD, including adopting no policy, using the text of the law as policy, restricting provider participation only, restricting patient participation only, or adding conditions to participation for both providers and patients; (2) the predominance of religiously affiliated hospitals means that many hospitals “opt out” because MAiD is inconsistent with religious doctrine; and (3) organizations that “opt in” may burden patients seeking MAiD with onerous requirements and organizations that “opt out” may not actually preclude access to MAiD, although neither physicians nor patients may recognize this.Footnote 16
For the purposes of this chapter, we use a subset of organizational policies to illustrate reasons why MAiD is only a paper right. First, however, we focus on how eligibility and procedural requirements in the law, ignorance of the law, and functional eligibility requirements such as financial resources, limit access to MAiD. We then illustrate how private organizational policies, even for organizations that opt in, can make MAiD a “paper option” for many individuals who otherwise may desire MAiD.
22.3 Legal Requirements Limit Access to MAiD
As others have reported elsewhere,Footnote 17 the strict eligibility requirements in MAiD laws prevent many individuals from using MAiD. Only residents of states where MAiD is legal can avail themselves of this option.Footnote 18 Further, only adults with decisional capacity can access MAiD,Footnote 19 which excludes terminally ill individuals with cognitive impairments such as moderate dementia.Footnote 20 The terminal illness requirement excludes from using MAiD those who are suffering from serious and incurable illnesses but who do not meet the terminal illness definition,Footnote 21 and the self-administration requirement may exclude individuals with disabilities that make it impossible to self-administer the medication.Footnote 22 And waiting periods imposed by law can also mean someone dies or becomes incapacitated between the first and second requests,Footnote 23 thus losing the opportunity to die with MAiD.
Aside from these eligibility requirements, the law also imposes significant paperwork burdens on physicians and patients. Physicians have to make referrals to other health care providers and complete legally required forms and submit them to the state.Footnote 24 And patients have to complete a written form that is witnessed by two people, neither of whom can be their current health care providers and one of whom cannot be a family member.Footnote 25 Individuals at the end of life, especially if institutionalized, may not be able to satisfy these requirements. These burdens are especially significant, given that people seeking MAiD are very ill and have limited life left.
In brief, existing public law requirements may result in very few people qualifying for MAiD, regardless of subsequent private policy choices of health care organizations, making this end-of-life option a paper right.
22.4 Ignorance of Law Limits Access to MAiD
Even assuming an individual satisfies the legal eligibility requirements for MAiD, many individuals may not know about MAiD. This is in part due to silence in many states’ MAiD laws about whether physicians can initiate a discussion about MAiD with their patients. In this statutory and regulatory silence, some private professional organizations have adopted recommendations suggesting that physicians not bring up MAiD with their patients to not unduly influence patients to hasten death.Footnote 26 Such recommendations from private organizations can be considered “soft [private] law,” which although not legally binding, may become very influential in practice. Following this guidance means that patients who are not well informed about end-of-life options may not know about MAiD.
Another way in which individuals may be ignorant of the law occurs when information about the law is not available in multiple languages. When we were researching California health care entities’ websites, it was not uncommon to find hospital policies and forms in both English and Spanish (e.g., advance directive forms), but never did we find an EOLOA policy posted in a language other than English.Footnote 27
Ignorance means that end-of-life decision-making rights are not exercised.
22.5 Hidden Health Care Organization Opt In Limits Access to MAiD
Another way access to MAiD is limited in states where it is legal occurs when health care organizations opt in but hide this information from their patients and the public. In our research, we found several instances in which organizations had an opt-in policy, but this was not easily found using the hospital website search function or that had a policy that could be found elsewhere online but not on the hospital’s webpage. Organizations that are not transparent about opting in make it less likely that their patients will use MAiD, but this hidden opt in may serve other organizational (i.e., private law) preferences, such as maintaining the status quo of low MAiD rates, resisting controversial change, reducing administrative burden on providers, and reducing risk of liability.
22.6 Functional Ineligibility Limits Access to MAiD
An individual may desire MAiD but not be able to afford this end-of-life option. Often the MAiD medication is not covered by health insurance.Footnote 28 This means that patients who choose MAiD must pay for the medication out of pocket. That cost is often from US$700 to over US$3,000 and has increased over time as more states legalize MAiD.Footnote 29 This may be cost-prohibitive for lower-income individuals, making them functionally ineligible for MAiD. Further, using MAiD is not an option through the Department of Veterans Affairs (VA),Footnote 30 and so veterans who receive health care through the VA will not have access to this end-of-life option, even in states where MAiD is legal.
It may also be the case that pharmacies do not have MAiD medications,Footnote 31 which means that patients will not be able to use this end-of-life option.
Lack of financial resources or lack of access to the aid-in-dying medication makes the right to die illusory for some otherwise eligible individuals.
22.7 Health Care Organization Opt Out Limits Access to MAiD
More significantly for limiting access to MAiD, however, is the law’s facilitation of individual health care provider and organizational opt out of participation. The law states that “[p]articipation under this part shall be voluntary. … A person or entity that elects, for reasons of conscience, morality, or ethics, not to participate is not required to participate.”Footnote 32
The law directs that “a health care entity may prohibit its employees, independent contractors, or other persons or entities, including health care providers, from participating under this part while on premises owned or under the management or direct control of that health care entity or while acting within the course and scope of any employment by, or contract with, the entity.”Footnote 33 Consequences for violating an organization’s policy can include “[l]oss of privileges, loss of membership, or other action authorized by the bylaws or rules and regulations of the medical staff”Footnote 34 and “[s]uspension, loss of employment, or other action authorized by the policies and practices of the health care entity”Footnote 35 among other potential penalties.Footnote 36 Health care entities are not permitted to prohibit health care provider or employee participation in the EOLOA when not acting within the “course and scope” of their employment or independent contracting duties with the entity and when not on the facility’s premises.Footnote 37
When a health care organization, such as a general acute care hospital, decides that its employees, and physicians on its medical staff, are not participating in MAiD, patients who receive their end-of-life care from the organization and affiliated personnel will likely struggle to access MAiD. In theory, patients could transfer their care to seek MAiD, but in practice, providers may not accept a new patient solely to facilitate the patient’s death through MAiD.Footnote 38 Additionally, patients may be physically unable to seek new care because they are actively dying or institutionalized, or the patient may not be able or want to leave their home to search for MAiD providers that may be geographically distant.
Religious hospitals constitute a significant share of private nonprofit hospitals,Footnote 39 and many religious hospitals have declined to participate in the California EOLOA.Footnote 40 Many of these hospitals are part of a large health system, which means that patients receiving care through the system will not have access to this end-of-life option. For this chapter, we use the case of one health system that has complied with the legal requirement to post its EOLOA policy publicly – Dignity Health – to demonstrate the effect of organizational opt out on access to MAiD.
Dignity Health system’s goal is “to create environments that meet each patient’s physical, mental, and spiritual needs,” and it is “made up of more than 60,000 caregivers and staff who deliver … care to … communities in 21 states. Headquartered in San Francisco, Dignity Health is the fifth largest health system in the nation and the largest hospital provider in California.”Footnote 41 Dignity Health started with one Catholic hospital and has since grown to include thirty-nine hospitals, of which twenty-four are Catholic.Footnote 42
Not surprising, given the Catholic church’s opposition to MAiD,Footnote 43 Dignity Health hospitals opted out of the EOLOA, and this opt out extends to other services such as hospice and home health.Footnote 44 Indeed, the system’s opposition to MAiD is explicit in its Statement of Common Values: “Death is a sacred part of life’s journey; we will intentionally neither hasten nor delay it. For this reason, physician-assisted suicide is not part of Dignity Health’s mission.”Footnote 45 This language is also copied in its official hospital policy, where it asserts that “[t]he mission, values, and philosophy of care of Dignity Health compel us to reject participation in physician aid in dying.”Footnote 46
Dignity Health’s EOLOA policy begins with a statement that the organization is committed to providing “excellent palliative care,” is opposed to MAiD, and wants to ensure that everyone is aware that Dignity Health is exercising its legal right to opt out of participating in MAiD.Footnote 47 Dignity Health then specifies the following with respect to MAiD:
B. It is the policy of Dignity Health that its facilities, programs, staff, and related operations shall not be involved in physician aid in dying, including:
1. Providing or securing an “informed decision” as defined by the Act.
2. Providing or completing the written and oral request as provided by the Act.
3. Providing any medication with the specific purpose of ending a human life as contemplated by the Act.
4. Being present at the time of administration of the medication by the patient.
C. Patients, families, nurses, physicians, and other providers are encouraged to fully explore and discuss care and treatment options for terminally ill patients. As part of that discussion, Dignity Health recognizes that requests for physician aid in dying will occur within the context of the physician-patient relationship. Dignity Health respects the rights of patients and physicians to discuss and explore all such treatment options, but fully expect that patients and physicians will respect and adhere to the Dignity Health’s position as set forth in this policy while undergoing and providing treatment in Dignity Health facilities, programs, and services.Footnote 48
Interestingly, Dignity Health’s website refers individuals with questions about the EOLOA to their primary care providers and the Coalition for Compassionate Care of California (CCCC), which is an organization that “promotes high-quality, compassionate care for everyone who is seriously ill or nearing the end of life”Footnote 49 and is officially neutral about the CA EOLOA. Although it is neutral, the CCCC website includes a wide range of information about all end-of-life decisions, including the EOLOA. The CCCC website also includes a link to the American Clinicians Academy for Medical Aid in Dying, which connects interested individuals to physicians willing to assist them in accessing MAiD.Footnote 50
Dignity Health has twenty-nine hospitals across California,Footnote 51 and thus its opt out significantly affects access to MAiD.
While this section focused on a religiously affiliated health system as a case of organizational opt-out of MAiD, other health systems in California have also opted out, despite no religious reason. Such opt outs also preclude patient access to MAiD, especially when the hospital is the only hospital in a rural region.
22.8 Health Care Organization Opt In with Additional Requirements Limits Access to MAiD
It may seem that when health care organizations decide to opt into the CA EOLOA, patients will have access to MAiD if they meet the legal requirements as outlined in the statute. However, many organizations that opt in create policies with additional requirements that may impede access to MAiD.Footnote 52 This section will focus on the CA EOLOA opt-in policy of the University of California San Francisco (UCSF) Medical Center to highlight organizational requirements that may restrict patient choice at the end of life.
One way that UCSF may make it more difficult for patients to obtain MAiD is by requiring that patients meet with two additional clinicians beyond the attending and consulting physicians required by law. The UCSF policy directs that patients inquiring about MAiD be referred to a social worker for information.Footnote 53 If the patient decides to move forward with the process, their attending physician to whom they make their initial request for MAiD must refer them to a mental health specialist for a capacity assessment and to ensure no mental illness is affecting their decision to pursue MAiD.Footnote 54 UCSF justifies their policy on the basis of protecting patients with impaired decisional capacity, including from mental illness.Footnote 55
With these requirements, UCSF’s policy is trying to ensure that patients’ decisions are truly informed and voluntary and thus autonomous.Footnote 56 However, requiring additional appointments and assessments slows the MAiD process, and because patients are terminally ill, they may die before the process is complete, frustrating their autonomy. Further, meeting with two additional providers, neither of whom the patient may have met before, can constitute a significant privacy burden and provides an opportunity for strangers to veto the patient’s decision, given that UCSF’s policy is not to prescribe aid-in-dying medication if health care team members have concerns about whether the patient is making a voluntary request.Footnote 57
Other parts of UCSF policy may also reduce patient access to MAiD. For example, aid-in-dying medication cannot be dispensed or ingested on the premises.Footnote 58 Patients who cannot be discharged from the hospital will not be able to use MAiD. Further, UCSF will not accept patients only for MAiD. UCSF will only facilitate MAiD for current patients.Footnote 59 Patients must also be able to communicate in the absence of familial support as UCSF policy requires that physicians discuss the EOLOA with their patients alone,Footnote 60 and this can negatively affect those who prefer to make decisions with family or who need decision-making assistance.Footnote 61 Moreover, there are additional requirements that physicians must meet in order to participate in MAiD at UCSF, such as obtaining UCSF Medical Staff EOLOA privilegeFootnote 62 and making reports to UCSF risk management,Footnote 63 which may decrease physician willingness to participate, given how many burdens are on their time in everyday medical practice and are added just through complying with the statutory EOLOA requirements.
In brief, even when organizations opt into MAiD, their policies do not guarantee that statutorily qualified individuals will be able to use this end-of-life option.
22.9 Discussion and Conclusion
Our research demonstrates that health care organizations, most of them private, mediate medical decision-making rights granted by the state. Employment contracts with health care professionals and medical staff bylaws and staff privileges for physicians constrain involvement in MAiD and affect the physician–patient relationship. Thus, the spread of MAiD across the United States may be only a symbolic victory for patients’ rights advocates because in practice, this option is not available to many patients due to health care organizations’ policies. Indeed, statistics reflect that only the most privileged patients are receiving MAiD. Organizational policies thus limit patient autonomy, which California’s EOLOA law was meant to increase, but such limits will primarily be experienced by rural patients, low-income patients, and patients with low health literacy.