Just imagine. Your client is diagnosed with an irreversible medical condition, perhaps the early or middle stages of Alzheimer’s Disease (AD). They understand what their future is likely to be. Their physician will tell them about treatments that may slow the progression but won’t stop nor reverse progression.
What should your client do? The presumption is that they’ll stay the course, do their best and receive support from their family and medical team. But what if this future, a future replete with dependence on others, loss of self and financial stress, isn’t acceptable to your client?
If you’re advising a client about this, do you have a comfortable understanding of such medical conditions? Should you point out the option to voluntarily stop eating and drinking (VSED)? What options do you present to your client as you prepare their advance health care directive (AHCD)?
VSED
While by no means common or mainstream, some who face a terminable illness or an unacceptable quality of life view a decision to VSED as a viable option. It’s typically done under medical supervision, including palliative care, and with support of family members. The intention is to hasten death. VSED is a conscious decision by competent individuals who want to control their own health care. It’s also a complicated decision, involving interwoven health, legal, cost and ethical considerations. It’s not for everyone.
Not Physician-Assisted Death
VSED isn’t and shouldn’t be considered a form of suicide. Rather, it’s a form of a natural death. No steps are taken to end life through the ingestion of drugs or acts of violence.
The use of VSED isn’t a version of physician-assisted death. A number of states, including California and Oregon, allow competent individuals to ingest life-ending medications when a number of statutorily defined requirements are met.1 Such requirements include:
- The patient must be diagnosed as suffering from an illness that’s terminal, meaning that their life will end within six months;
- The patient must have capacity and meet with physicians over a period of many weeks, resulting in physician certifications that the patient has capacity and understands the implications of this decision; and
- Most importantly, the patient must self-administer the medication that would end life.
Individuals suffering from dementia don’t and can’t satisfy these criteria, and so physician-assisted death isn’t a possibility for them. This is true notwithstanding stated desires, typically in advance directives, to cease living when capacity is absent and dependence on others is absolute.
Motivations
Individuals who consider VSED have three primary concerns:
Control. At the core is a strong desire for maintaining autonomy and intensely felt personal dignity. These individuals want as much control as possible over their personal health care decision making, living and dying.
Impact on loved ones. Many are concerned about how years of dealing with their dementia will impact their loved ones.
Cost of care. This is a factor treating physicians too rarely consider. Individuals in such situations will likely need home care services that can cost $4,000 to $15,000 per month, care in a facility where the cost may be around $8,000 to $20,000 per month and ongoing attention from physicians and physical therapists. Over time, the cost can be in the hundreds of thousands of dollars. For middle and lower income individuals, in particular, the potentially devastating impact is obvious. While the federal Medicaid program may pay for some home care and facility-based care, eligibility can be difficult to achieve. Moreover, some services aren’t covered by Medicaid, and many providers don’t accept Medicaid.
Real-Life Situation
We currently represent Mr. and Mrs. S. Mr. S is 56 years old. He’s been diagnosed with early onset AD. Second and third opinions have confirmed the accuracy of this diagnosis. He and his wife witness his memory becoming more and more compromised and his behavior becoming less and less safe and predictable on a daily basis. Mr. S expresses great concern about the impact on his wife and their two children.
Mr. S is remarkably positive and accepting of his diagnosis. In the relatively near future, he states, with clarity and full understanding of the implications, that he’ll stop eating and drinking. His wife is very loving and devoted. They hold hands in every meeting with us. She accepts his decision, as do both of their children. Importantly, they’ve received counseling, primarily to help their children process and accept his decision.
Mr. S has a close relationship with a palliative care physician and team. They’re aware of his decision and will support him.
We drafted his AHCD and included very specific provisions regarding actions his health care decision-making agent is allowed to take and those that his agent isn’t allowed to take. It’s explicit with regard to VSED.
In re Drabick
Years ago, we represented David Drabick, whose brother, William Drabick III, was in a permanent coma after driving his motorcycle into a concrete pillar.2 William had no AHCD or any other documents regarding health care decisions. He had no spouse or children, but he did have a longtime girlfriend.
Physicians at Kaiser concluded that his condition was hopeless. He was sustained by tube feeding. The physicians supported our petition, as attorneys for David, his conservator, to allow for the withdrawal of tube feeding for this permanently and hopelessly incapacitated individual. Based on her intimate knowledge of William, his girlfriend opined that he wouldn’t want to live as a “vegetable.” David agreed, as did William’s other adult brothers, who all submitted declarations expressing the belief that William “would not view his present state as a meaningful or an acceptable existence.”
The Superior Court judge refused to grant the petition. An appellate court reversed that decision. In a precedent-setting ruling, the appellate court ruled that William’s best interests should be evaluated and relied on. The artificial administration of nutrition and hydration tube feeding was then withdrawn.
William was in a skilled nursing facility at that point, essentially alone, abandoned. David didn’t live nearby, and William’s girlfriend had moved on. We sat with him often. The nursing staff kept his lips moist and otherwise attended to him. Importantly, there was no indication that he was in any pain or that he had any sense of suffering. He died approximately 10 days after the withdrawal of tube feeding.
This decision and other precedents established the right of each of us to make our own health care decisions.3 Those rulings also clearly establish that the artificial administration of nutrition and hydration are medical procedures that can be accepted or rejected. In Bartling v. Superior Court4 and Bouvia v. Superior Court,5 the courts held that physicians must respect competent patients’ refusals to submit to further treatment.6 In Bouvia, health care providers refused to comply with a competent but seriously ill woman’s demand to have a nasogastric feeding tube removed from her body. The trial court refused to compel the hospital and physicians to comply with the patient’s wishes, but the appeals court disagreed, holding that the patient “sought to enforce only a right which was exclusively hers and over which neither the medical profession nor the judiciary have any veto power.”7 This point is important because some physicians believe that tube feeding isn’t a medical procedure that requires consent. Rather, they view it as an approach that must be used and that the patient or agent can’t reject.
Mandatory Reporters
In addition to understanding what VSED is, it’s important to understand what it isn’t. Offices of Adult Protective Services (APS) are tasked with protecting older and disabled adults from financial, physical and psychological abuse. With that in mind, they issue guidelines or descriptions of arguably or presumptively abusive circumstances. This is important, as many entities and professionals are “mandatory reporters” who must contact APS when they witness abusive behaviors.
One APS office in California includes the following language on its list of examples that constitute abuse: “an example of self-neglect is a failure to eat or drink. Self-neglect is a reportable event.”8 Many non-profit organizations and medical care providers who are mandatory reporters may be concerned that they must report VSED matters to APS. Attorneys, parenthetically, aren’t mandatory reporters.
By definition, VSED isn’t self-abuse. It’s a conscious act of someone who understands its implications. Classically, reportable self-abuse focuses on situations in which an older or disabled person unintentionally fails to obtain necessary medical care or nutrition or otherwise exposes themselves to risk. This underscores the need for proactive documentation of an individual’s wishes.
Advising Attorney’s Responsibilities
Estate-planning attorneys pride themselves on their knowledge of sophisticated trust and tax techniques designed to serve their clients. This is an appropriate, technical and substantially objective approach. Too many, however, pay little or no attention to the strikingly important contents of an appropriately drafted AHCD.
While this article focuses on the emerging concept of VSED, it raises a larger, more important point: Virtually everyone is deeply concerned about their quality of life, their health care decision making and how end-of-life decisions will be made. In the end, perhaps these considerations are far more important than tax and trust planning.
An informed discussion about the contents of a client’s AHCD typically consumes 30 minutes or more. Reliance on statutory or check-the-box forms is a disservice to clients. When standard forms are used, shortcomings in language and ambiguous provisions are too common. Every estate-planning attorney should have or develop a deep understanding of the health care decision- making issues that arise for the vast majority. These questions include:
- Are the highest levels of pain management to be used even if it could hasten death?
- Are there religious or cultural factors that should be addressed and integrated into AHCDs?
- How does the client define “quality of life,” and how does that impact end-of-life planning?
- Is the chosen health care decision-making agent truly capable of making surrogate health care decisions and implementing terms of an AHCD?
- How are end-of-life decisions to be made, relying on what criteria?
Here to Stay
VSED isn’t a new phenomenon. What’s new is the elevation of VSED as an explicit, documented choice that’s no longer veiled in secrecy. It will be an increasingly common point of consideration for clients suffering from dementia and other relentlessly degenerative medical conditions.
This discussion is by no means a recommendation that individuals should implement VSED. Rather, it’s an effort to clarify the phenomenon and reinforce respect for individual autonomy regarding health care decision making.
Endnotes
1. See California End of Life Option Act, California Health and Safety Code, Division 1, Part 1.85, Section 443-443.22.
2. Oregon Death With Dignity Act, ORS Sections 127.800–127.897. For a discussion of the Death With Dignity concept, see https://deathwithdignity.org/resources/faqs/.
3. See In re Drabick, 200 Cal.App.3d 185 (Cal. Ct. App. 1988).
4. See Cruzan v. Director, Missouri Dep’t of Health, 497 U.S. 261 (1990).
5. Bartling v. Superior Court, 163 Cal.App.3d 186 (1984).
6. Bouvia v. Superior Court, 179 Cal.App.3d 1127 (1986).
7. Ibid., at p. 1135.
8. See, e.g., the policy of then-Adult Protective Services of Santa Clara, Calif., “Recognizing Abuse,” where it’s the failure to provide food, clothing, shelter or health care that’s the reportable event, not an individual’s refusal that’s reportable, https://socialservices.sccgov.org/protective-services/adult-protective-services/recognizing-abuse.