California recently marked the one-year anniversary of the End of Life Option Act (the “CA Act”),1 the state’s hotly debated aid-in-dying (AID) law and the fourth such statute in the country. In the year since the CA Act took effect, two more jurisdictions have passed similar laws. The roster now includes, in the order of passage, Oregon,2 Washington,3 Vermont,4 California, Colorado5 and Washington D.C.,6 and the right to take AID drugs is protected by case law in Montana.71 Furthermore, according to the Death With Dignity National Center,8 30 states considered or are considering such legislation in 2017.9 In Hawaii alone, at least five bills on this subject were introduced this year.10 The AID movement has gained enormous momentum, due to organizations such as Death With Dignity and Compassion and Choices.11 It is reasonable to expect that AID laws will be enacted in several more states in the next decade.
What do these AID laws mean for health providers, and how can attorneys advise their clients to help them make sound choices? What risk management issues do these laws present, and what are some best practices and trends? To counsel clients effectively, attorneys need more than a command of applicable law. They need to understand these practical issues and approach this topic with sensitivity. They also need to be prepared for the likelihood that not all stakeholders (boards, management staff, caregivers, and patients) will agree on this subject.
A Note About Language
Perhaps the first challenge in addressing AID is terminology. Language matters, and the manner in which these laws are described can affect the substantive discussion. Advocates for AID laws12 favor the term “death with dignity,” whereas critics of these laws feel this term devalues human life.13 “Aid-in-dying” would appear to be a more neutral option, yet its detractors may charge that this term euphemizes the profound act allowed by these laws. “Physician-assisted death” is factually accurate, given the role of the physician in evaluating the patient and prescribing AID drugs; however, it is also misleading if it suggests that the drugs are administered by the physician. Terms such as “assisted suicide” and “mercy killing” are roundly rejected by the death-with-dignity movement, and the AID laws pointedly state that the act of taking AID drugs under these laws is neither suicide nor homicide.14 Recognizing that no term is entirely free of bias, this article will use the term “aid-in-dying” or “AID.”
Aid-in-Dying Laws from 5,000 Feet
The state AID statutes are modeled after the Oregon statute, the first state AID law. As a result, they are the same in all key respects. Where they deviate from one another, the differences tend to reflect distinctions in state licensing law, the push-and-pull of the legislative process, or refinements as states learn more about what works and does not work under these laws.15 The following summary, while based on the CA Act, captures the key elements of the other states’ laws, as well.
The CA Act allows terminally ill state residents who leap through various procedural hoops to take AID drugs to expedite their death. These include two verbal requests and one written request for AID drugs, strict witnessing requirements, and visits to both an attending and a consulting physician to confirm the patient’s terminal prognosis (six months or less), legal competency, and informed consent. No other person, not even a sibling or spouse, can help administer the drugs or make the request for the drugs. Where a patient shows signs of depression or mental illness, a referral to a mental health specialist is also required. No medication may be prescribed until the mental health specialist determines that the patient no longer suffers from the condition impairing his or her judgment.16 Commentators have observed that pursuing death under this law requires time and patience. The law’s emphasis on process reflects the delicate balancing of the rights of all affected parties. It is also designed to prevent impulsive action, duress, or abuse.
One of the most important assertions in the AID laws is that taking AID drugs under these laws is not suicide, homicide, or assisted suicide.17 While critics of these laws might dispute this characterization, this statement is profound because it helps to assure that those who take AID drugs or who “participate” under these laws are not engaged in a criminal act. Significantly, such actions will not affect the availability of insurance (life insurance, in particular).18 Furthermore, a death from consuming AID drugs is deemed a natural death from the underlying disease, and actions taken in accordance with the law cannot form the basis for a neglect or elder abuse claim.19
California’s law, like its predecessors’ laws, treats health care providers (HCPs) evenhandedly, regardless of their position on the use of AID drugs. Whether the HCP opts in or out of “participating” under the law, the HCP is protected from adverse action, such as censure, disciplinary action, or loss of licensure — as long as the HCP does not violate the statute.20
In California, “participation” is a narrow concept that includes only (1) performing the duties of an attending physician, consulting physician, or mental health specialist; (2) delivering the prescription for, dispensing, or delivering AID drugs; or (3) being present during ingestion of AID drugs.21 In fact, not all acts by a physician or mental health specialist constitute participation. The term excludes (1) diagnosing a terminal disease, making a prognosis, or determining that a patient has capacity to make decisions under the CA Act; (2) providing a patient with information about the CA Act; and (3) referring a patient to a participating provider.22 For HCPs that are not or do not employ or engage physicians, the focus of "participation" is on handling AID drugs and being present during ingestion.
HCPs can prohibit their staff and contractors (and implicitly their volunteers) from participating under the CA Act, but they can only enforce this prohibition if they give these workers notice of their policy. Similarly, where a HCP allows participation, employees and contractors can refuse to participate for reasons of “conscience, morality, or ethics” without penalty.23
Who is a Health Care Provider?
These laws (and their protections) appear to be designed primarily for doctors and other allied professionals, hospitals, hospices, and pharmacies. HCPs generally include skilled nursing facilities but not social and residential models of care, such as adult residential facilities, assisted living communities, and continuing care retirement communities (now increasingly called “life plan communities").24 One notable exception is Colorado, which expressly includes continuing care retirement communities and assisted living facilities in the list of HCPs.25 The omission of residential models is significant, because the traditional health care setting is not “home” for a patient. In contrast, a residential care facility and, for custodial care patients, a skilled nursing facility, is clearly home for its residents.
This distinction raises philosophical and practical challenges for a skilled nursing facility or residential care facility that declines to participate on ethical or religious grounds but also wishes to safeguard residents’ rights of self-determination. It is neither easy nor convenient for these residents to ingest these drugs elsewhere. Furthermore, the residential facility does not enjoy the legal protections that HCPs do. To help address these challenges, particularly for residential care providers, state regulatory agencies may need to offer guidance.
In California, the state Department of Social Services (DSS) provided direction for operators of residential care facilities for the elderly (RCFEs). In a detailed memorandum, DSS reasoned that although they are not HCPs under the CA Act, RCFE licensees and their employees are persons under the CA Act who may, due to “conscience, morality, or ethics,” opt not to participate in activities authorized under the CA Act.26 DSS therefore concluded that RCFEs could instruct their staff not to participate in activities permitted by the CA Act. It also provided guidance on other issues, such as storage and self-administration of AID drugs.27 A similar approach may be warranted in other states to address gaps in the definition of HCP.
In developing policies under the AID laws, clients need to decide whether they will participate and if so, to what degree. This is not an all-or-nothing proposition. HCPs can elect to participate in some acts but not others. The key is to be explicit in their policies and their communications with staff and residents or patients.
For many HCPs, the primary risk management concern is receipt and storage of medications. Although the AID laws are silent about the content of the AID drugs, they typically include a barbiturate that depresses the central nervous system and (in large enough doses) causes death. Other drugs contained in the typical “cocktail” are a sedative and anti-nausea medication. Particularly in residential and long-term care settings, clients harbor legitimate concerns about access to these drugs by other residents. Access by staff is a more universal concern among HCPs.
HCPs such as long-term care providers and hospitals also express concern about staff being present during ingestion of the AID drugs. While this would not seem to present a significant risk of harm, these HCPs may prohibit this practice because (1) being present suggests that the provider condones dying in this manner; (2) an employee who is present when a resident ingests AID drugs may feel compelled to assist the resident (in violation of the law) if the resident is struggling with the drugs; or (3) it may be traumatic to the employee to watch the resident die in this manner. The first rationale is often recited by religiously affiliated HCPs.
Although it is not deemed “participation” under the CA Act, it is a best practice not to allow staff, contractors, or volunteers to witness a resident’s written request to take AID drugs. If there is any doubt about the validity of the form (such as the resident’s competency, prognosis, or independent decision-making), HCPs do not want themselves or their workers implicated. If a resident or patient does not advise his family of his plans and a family member learns that an employee or other agent of the provider witnessed the written request for the drugs, the HCP, particularly a long-term care provider, will suffer the consequences. It is best to decline to provide this form of support.
Trends Among Providers
Not all HCPs opt to participate in the AID laws. For example, Catholic health systems and Veterans’ Administration hospitals routinely decline to participate, whereas many private secular and university systems allow at least some participation.28 Hospice agencies and pharmacies are mixed, as are physicians. A 2016 survey of physicians revealed that nationwide, about 57 percent supported aid-in-dying.29 This number reportedly increased from 54 percent in 2014 and 46 percent in 2010.30 While the American Medical Association has historically opposed aid-in-dying,31 states may adopt a neutral stance on this subject.32
The following trends are common in senior care:33
- Many senior care providers opt out of participation, but some carve out exceptions for contracting physicians or hospices, and a few allow workers to be present during ingestion.
- These providers generally advise staff and contractors not to witness requests for AID drugs.
- There is little difference in AID policies based on faith affiliation. While their rationales may vary, senior care providers tend to choose a complete or partial opt-out.
- Caregivers often oppose AID (generally on religious grounds), while the board, management, and residents may not. As a result, some caregivers decline to provide comfort (palliative) care after ingestion. (While comfort care is not deemed participation, it will follow ingestion by minutes.)
A uniform feature of these statutes is the requirement that data be collected and reported.34 In Oregon and Washington, which have reported data for years, roughly two-thirds of prescribed end-of-life drugs were ingested and one-third went untouched.35 Effective pain and symptom management by hospices, the comfort of having the prescription, rapid health declines, and the influence of family or clergy are all potential factors driving this statistic.
The data also reveal that the typical person taking AID drugs is elderly and dies at home, usually with hospice care. A very small number of patients in Oregon and Washington died in a long-term care or similar setting.36
California issued its first annual report on June 27, 2017; in less than seven months, 191 prescriptions for AID drugs were written and 111 patients (87.4 percent of whom were 60 or older) died from ingesting these drugs.37 As of the first anniversary of the CA Act, the pace has increased: 504 AID drug prescriptions have reportedly been written.38 California’s prescriptions in year one already surpass the annual prescriptions in Oregon and Washington combined. This was anticipated given population differences. Compare Vermont, which is due to publish its first biennial report in 201839 and is expected to report a small fraction of these numbers.
While the AID statutes triggered robust debate during the legislative process, they have also occasionally been litigated. For example, the Oregon law was upheld in 2006 in Gonzalez v. Oregon, in which the Supreme Court ruled that the United States Attorney General overstepped his authority when he tried to block Oregon physicians from prescribing AID drugs under the Oregon AID law.40 In addition, on June 16, 2017 a California superior court judge agreed to allow a suit against the CA Act to proceed. The trial setting conference is scheduled for October 2017.41
Advice to Legal Counsel
As noted above, legal counsel advising HCPs need more than a command of the AID laws in their jurisdiction and a handle on related risk management issues. To advise their clients effectively, they also need to be sensitive to the values of their clients, whether informed by religious teachings or other factors. In addition, they should anticipate that staff, management and others associated with the HCP may not adopt a uniform position. More likely, there will be internal debate among stakeholders about the HCP’s end-of-life policies.
When advising clients about AID, it is critical that counsel emphasize the need to disclose the provider’s policy (to staff, contractors, residents and patients, and their families), to train and retrain workers, and to initiate open discussions of this difficult topic. It is also advisable to ask (more than once) what the client wants. Attorneys have a unique opportunity to help clients craft a policy that reflects their values, balances their legal risk, and honors the rights of their residents and patients. The challenge is great, but helping clients address this profound issue is highly rewarding. As more state AID laws are enacted, attorneys will need to be prepared to counsel their clients about this delicate, complex subject.
8 The Death With Dignity National Center is a Section 501(c)(3) organization that promotes AID laws nationwide based on the Oregon model and provides related information and support. Its sister organization, the Death With Dignity Political Fund, is a Section 501(c)(4) organization that drafts Death with Dignity laws and advocates for state Death with Dignity legislation. See https://www.deathwithdignity.org/about/.
11 Compassion & Choices, also a Section 501(c)(3) organization, has a broader mission than Death With Dignity. Through education and advocacy, it strives to assure that health care providers honor and enable patients’ decisions about their care, including end of life options. See https://www.compassionandchoices.org/who-we-are/.
13 This criticism is common among Catholic health organizations. See: https://www.chausa.org/docs/default-source/hceusa/pas-how-should-catholic-health-care-respond.pdf?sfvrsn=0.
15 For example, Colorado law clarifies that continuing care retirement communities and assisted living facilities are also health care providers protected by the state's AID law. CRS 25-48-102(4); CRS 25-3-103.7 (1)(f.3)
26 Evaluator Manual Transmittal Sheet, 2015 Adult Community Care Facilities and Residential Care Facilities for the Chronically Ill, Chaptered Legislation / Implementation Plans. See http://ccld.ca.gov/res/pdf/16APX-15.pdf at pp. 10-12.
28 See, for example, http://www.capradio.org/news/insight/2017/06/01/insight-060117b/ for information reported by Compassion & Choices about hospital participation in California. Unfortunately, the list of hospitals provided does not elaborate on the extent to which or the manner in which hospitals participate.
31 See the AMA Code of Medical Ethics Opinion 2.211, http://journalofethics.ama-assn.org/2013/03/coet1-1303.html. The AMA is studying current trends regarding this issue. See https://www.nytimes.com/2017/01/16/health/physician-aid-in-dying.html.
32 For example, the California and Colorado Medical Societies have reportedly adopted a neutral position regarding aid-in-dying. See https://www.compassionandchoices.org/wp-content/uploads/2016/07/FS-Medical-Aid-in-Dying-Healthcare-Professional-Orgs-FINAL-11.1.16-Approved-for-Public-Distribution.pdf .
35 See Oregon's 2016 report at: http://www.oregon.gov/oha/ph/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year19.pdf and Washington's 2015 report at http://www.doh.wa.gov/portals/1/Documents/Pubs/422-109-DeathWithDignityAct2015.pdf.
38 See http://www.npr.org/documents/2017/jun/CAEOLOAYrOneinfographic.pdf. See also http://www.npr.org/sections/health-shots/2017/06/08/530944807/aid-in-dying-requires-more-than-just-a-law-californians-find.
41 See Case RIC1607135 – Ahn v. Hestrin [Riverside County]. For news coverage of this case, see https://www.usnews.com/news/news/articles/2017-06-16/judge-allows-lawsuit-on-life-ending-drugs-for-terminally-ill.