Dilemmas in Implementing Advance Directives of Patients with Advanced Dementia

Abstract

Background/Objectives: To avoid becoming mired in prolonged deep dementia, some people seek to hasten death by advance instructions rejecting life-sustaining medical intervention (LSMI) at a point of cognitive decline they define in advance as unacceptable. When the time comes to implement such advance instructions and to allow the person in advanced dementia to die, many clinicians experience moral and ethical qualms. The decision makers face a clash between people’s legally recognized self-determination prerogative to control their post-competence medical fate and the decision makers’ conviction that humane treatment dictates sustaining the well-being, i.e., the physical “best interests,” of the patient who no longer recalls prior instructions grounded in concerns about personal dignity. The authors’ objective here is to provide guidance in resolving this anguishing dilemma confronting medical decision makers. Methods: The authors construct and analyze a case scenario involving a patient in a state of advanced dementia with a clear advance instruction rejecting LSMI at the current point of debilitation, but who is not ostensibly suffering, is experiencing a modicum of life satisfaction, and is making life-affirming utterances. The two lead authors present contrasting views on whether legal and moral factors impel the implementation of the advance directive rejecting treatment or rather dictate life-sustaining medical intervention. Results: At this early stage of jurisprudence involving persons in advanced dementia, there can be no definitive resolution of the difficult legal/moral clash confronting decision makers. Some sources would conclude that persons are legally entitled to define precipitous mental decline and complete dependence on others as intolerably undignified and inconsistent with their self-defined life narrative. Other sources would be guided by humane respect for the contemporary well-being of a non-suffering patient, especially one making life-affirming utterances. Conclusion: Through the lens of this illuminating case and contrasting analyses, readers should better understand how clinicians should weigh advance directives against shifting care preferences subsequently articulated by persons with advanced dementia.

1. Case Scenario

Lee is a 74-year-old widowed female who worked as a newspaper editor and took great pride in her analytical skills. Five years ago, when she was diagnosed with early-stage dementia, she signed an advance directive stipulating her refusal of all forms of life-saving treatment when she can no longer read and understand a newspaper, as she views such a level of cognitive incapacity as undignified and contrary to her personal and professional identity. Lee has one child, 49-year-old Yuna, who, while not a designated health care agent, is willing, as next of kin, to make Lee’s post-competence medical decisions.

Five years after signing the advance directive, Lee has reached a stage of decline in which she is totally dependent on her caregivers for daily living tasks such as bathing, eating and toileting, and is placed in a residential facility. She has no recollection of her past social and business associations, and does not recognize her loved ones. Furthermore, she can no longer read the newspaper or other written material. However, she still interacts at a rudimentary level with visitors, and her conversations are often about when she wants to eat, drink or be made comfortable. She also enjoys playing music on a radio and watching television, although she cannot comprehend the televised programming.

Lee has now contracted pneumonia that is treatable but fatal without intervention. When asked if she wants to continue living, she now expresses a desire to live, having no recollection of her advance directive. When informed by her providers that a painless, oral antibiotic can save her life, she says “I want to keep living,” although she does not understand the nature of pneumonia or the notion of an antibiotic. Yuna, the patient’s sole child, requests the providers to adhere to the advance directive and withhold the antibiotic, stating that this is what Lee would have wanted (notwithstanding her current wish to keep living).

Should the attending physician listen to the patient’s current desires and administer the antibiotic, or withhold the medication in ostensible accord with her advance directive, or follow some other course?

2. Discussion

2.1. Position I: Why the Advance Directive Should Be Upheld

Norman L. Cantor

Well-established principles of end-of-life jurisprudence obligate Lee’s health care providers to implement Lee’s prior instructions as requested by her appropriate surrogate, her adult daughter Yuna. That means refraining from administering an antibiotic while providing palliative relief, as needed, during Lee’s ensuing dying process.

Ever since the landmark Quinlan case in 1976 [1], American jurisprudence has recognized a person’s right to control medical interventions, including life-sustaining interventions (hereinafter LSMI), as a matter of self-determination and bodily integrity. That legal prerogative has been grounded both in common-law rulings and in the liberty clauses of state and federal constitutions. Further, the right to control medical interventions is not lost following loss of cognitive competence. Every American jurisdiction has accepted the principle of precedent autonomy—the prerogative of a competent person to use a statement of preferences to control post-competence medical interventions. A now-incompetent patient’s clearly expressed wishes govern—whether contained in a formal advance medical directive or gleaned from informal expressions [2,3].

A person formulating advance medical instructions may be impelled by a variety of goals and/or values. Some persons care most about sensory well-being—prospective physical and emotional comfort and avoidance of suffering. Some people are guided by religious principles. Some people’s wishes reflect altruistic concerns about the prospective burdens on family or caregivers. Some people are inspired by aversion to subsistence in what they deem an intolerably undignified state of mental debilitation and dependence on others. This aversion to extreme cognitive dysfunction might be grounded on apprehensions about embarrassment or distress, but is more likely lodged in concern about shaping the post-mortem recollections of others and preserving a lifetime image as a critically acute individual.

Lee’s advance medical directive falls in this last category, relating to self-defined indignity and lifetime narrative. Consistent with her lifetime skill as a newspaper editor, she defined loss of reading ability as the trigger point for the cessation of post-competence medical intervention. She explicitly noted that such reading debilitation would be, for her, undignified and violative of her personal identity. Her current level of cognitive deterioration is well beyond that designated point. Not only is Lee unable to understand printed material, she no longer recognizes loved ones, can no longer interact with her environment except at a rudimentary level, and is totally dependent on caregivers for daily tasks like bathing and toileting.

Significant legal precedent confirms that people issuing advance instructions are entitled to ground cessation of LSMI on a self-defined level of intolerably undignified quality of life. In Tavel [2], the Delaware Supreme Court upheld a daughter’s determination to withdraw artificial nutrition and hydration from her 88-year-old stroke-victim mother based on the mother’s prior wishes not to be sustained in a helpless and dependent state. In DeGrella [3], the Kentucky Supreme Court similarly upheld a family determination to withhold life support from a permanently unconscious patient who had, while competent, expressed aversion to such a debilitated condition. In Barnsley [4], a British court upheld a family’s wishes to withhold artificial nutrition and hydration from a temporarily unconscious patient whose physicians were pushing for gastrointestinal surgery to install a stoma and ileostomy. The family’s opposition to life-extending surgery was based on the patient’s prior expressions that life with an ileostomy would be (for this handsome, vain individual) intolerably undignified.

Health care providers have a legal and ethical duty to adhere to a patient’s articulated wishes (or withdraw from the case) even if they disagree with the patient’s assessment of an intolerable quality of life. Physicians’ and nurses’ professional organizations have acknowledged that patients’ self-determination prevails whether expressed by a still-competent patient or by advance instructions. Health care providers’ duty to implement advance instructions can be enforced (if necessary even by lawsuit) by an appropriate representative of any patient whose wishes are overridden. In Greenberg v. Montefiore New Rochelle Hospital [5], the court upheld a malpractice cause of action against an attending physician who had administered a life-extending antibiotic to an advanced dementia patient with sepsis despite a clear advance directive declining such medical intervention at the stage now at hand. The court indicated that the patient’s definition of an unacceptable quality of life must prevail against an attending physician’s contrary assessment. Lee’s declaration about avoidance of serious cognitive incapacity must likewise be respected.

In his Point II urging that Lee’s AD be overridden, William Choi asserts that implementation, i.e., letting her die, would broadly communicate a stigmatic message that dementia is so undignified that it “can justifiably be eliminated.” Not so! Lee has defined a level of cognitive debilitation intolerable to her personal vision of indignity.

A person can, of course, change their mind and revoke an advance directive. Such a change of mind does not require any particular formality such as writing or a signature or witnesses. But to revoke a considered value choice about prospective medical intervention and personally intolerable quality of life, a person must have a modicum of capacity to understand and weigh the relevant factors. Those factors include not only the benefits, risks, and side effects of proposed treatment, but the treatment’s consistency with the long-term values and goals that have impelled the existing directive. Any change in an advance rejection of LSMI based on a prospective diminution in quality of life demands capacity for reflection about what makes life valuable for that person.

Lee had made a judgment that life without capacity to digest reading material would not be worthwhile given her lifetime personal and professional identity. Yuna, Lee’s next of kin, has not indicated that Lee ever altered that assessment while still competent. Indeed, Yuna’s pending request to withhold an antibiotic signals a belief that Lee never deviated from her previously expressed wishes. And Lee’s current mental status is clearly devoid of capability to reflect on her lifetime identity and conceptions of intolerable indignity. As Lee has no comprehension of communicative interaction beyond a rudimentary level and no ability to reflect on what is valuable to her identity, she clearly lacks capacity to revoke her advance directive. This conclusion is reinforced by a recent decision that revocation of an advance directive should ordinarily require “clear and convincing” proof. In re Guardianship of L.A.C., 2024 Okla. 2 (Okla. Sup. Ct. 6 February 2024).

Should caregivers and health care providers implement Lee’s prior rejection of LSMI in the face of Lee’s contemporaneous expression that she “wants to keep living” and her continued enjoyment of music? My response is yes. That Lee can still derive some rudimentary satisfaction from music or T.V. cannot override Lee’s advance directive. Lee’s distaste for advanced dementia was not grounded on apprehension of existential distress or suffering, so that current “contentment” cannot be deemed to overcome her considered value preference [6].

Nor does Lee’s utterance that “she wants to keep living” dictate non-adherence to her considered advance directive. For persons with advanced dementia like Lee, unwitting, unconsidered expressions of transient feelings, sensations, or emotions do not govern their medical fates or override considered value choices. For example, in the absence of advance instructions from the patient, such a patient’s verbal and/or physical resistance to a prospective life-extending treatment would be overridden by medical decision makers who felt that the treatment would best serve the patient’s interests. That patient’s expressed emotional revulsion to LSMI, or even an utterance that “I would rather die,” would not resolve the treatment issue.

A person with advanced dementia’s unconsidered expressions deserve no better fate when uttered in a life-affirming direction. Imagine, for example, such a patient whose advance instructions declined LSMI at the stage of cognitive debilitation now at hand and who has been diagnosed with kidney dysfunction necessitating dialysis. The patient may be calm and content and now say that she “wants to keep living,” but surrogate decision makers and medical staff would not initiate life-sustaining dialysis. Or suppose a patient with a similar level of dementia with a similar advance directive who develops dysphagia, a swallowing disorder normally requiring ANH. Providers could and should implement the advance instructions and withhold ANH despite the non-suffering patient’s tranquility and assertion, if questioned, that she “wants to keep living.”

If considered advance instructions could be overridden on the basis of instinctive life-affirming expressions, there would be severe harm to a variety of advance directives grounded on the patient’s lifetime values and principles. This would be true for religiously based choices of a Jehovah’s Witness or Christian Scientist. This would be true for a deeply altruistic person who had not wanted to pose a continued economic or emotional burden on her loved ones or caregivers. In Lee’s case, the harm to Lee would be the prolonged extension of a debilitated status that she had deemed intolerably demeaning and an unwanted stain on her life narrative.

2.2. Position II: Why Lee’s Advance Directive Should Not Be Upheld

2.2.1. William Choi

The case of Lee evokes the debate amongst medical providers and bioethicists about the moral authority of advance directives (AD). The principle of precedent autonomy, as articulated by bioethicists like Norman Cantor, gives a competent person the prerogative to dictate the medical fate of their future self. Their arguments would require clinicians to override Lee’s current interest in living based on her prior rejection of living with moderate dementia—a cognitive state wholly incongruent with her identity as an intelligent, analytic woman. When caring for patients who are rendered cognitively incompetent or unconscious, clinicians may often defer to ADs to make a medical decision about life-saving treatment. Lee’s case, however, presents a unique moral problem in which the cost of adhering to the AD is the now-unwilling death of Lee. The moral discomfort elicited by withholding medication from someone who wants to live, despite their incompetent status, should evoke deeper ethical inquiry into what it means to respect a patient’s autonomy and their narrative identity.

Withholding life-saving treatment is not an uncommon practice in medicine. However, most cases involve patients who voluntarily refuse treatment or are unable to express a preference (by loss of consciousness or severe cognitive impairment), leading clinicians to defer to family members’ substituted judgements or an AD. Withholding life-saving treatment from a patient like Lee who is asking to live, on the other hand, contravenes our basic moral intuitions about caring for others without abandonment: a principle tenet of medical care manifested in our ethical intuitions, cultural beliefs and legal practices [7]. Those who justify this action might do so by asserting the moral precedence of the rational autonomy expressed by ADs, which raises the following question: rational autonomy for what? Cantor emphasizes the importance of rational autonomous control over one’s death as a dignified ending to one’s life narrative, which would come at the expense of Lee’s current desire to live and enjoy rudimentary pleasures. However, privileging ‘rational’ life narratives not only promulgates a parochial view of what a ‘true’ narrative entails, but also an ableist assumption that those with cognitive disabilities are unable to authentically author their lives [8].

A narrative identity is formed around a life story about what the person who the narrative is about considers meaningful. Narratives need not be understood in the traditional Westernized model of a linear journey with demarcated stages of a rising action, climax and denouement, but can rather take any form that could be meandering or goal-driven, episodic or continuous, individualized or collective [9]. Unexpected life events often create critical turning points, inspiring us to pick up new narrative threads rather than clinging to a single narrative structure, the latter often leading us to disappointment and introspective instability [10,11]. This is especially true of our reactions to acquired disabilities, with studies demonstrating that people often fail to understand what it is like to live with disability [12], and can harbor inconsistent preferences about life-saving medical decisions for future states of disability [13], while those who are able to accept their disability typically exhibit greater well-being [14]. Thus, the snapshot of our preferences captured in our advance directives can best be viewed as a ‘work in progress’ about one’s narrative trajectory thus far, which often conflicts with the reality of complex end-of-life decision-making [15]. So long as the narrator is capable of authentically authoring their lives, they should be afforded the freedom to change their narrative direction and construct a new future, especially when it comes to disability.

Cantor may question whether patients with dementia are capable of authentic authorship. Lee’s values about preserving her image as an accomplished, intellectual woman seem to hold greater weight than her current pleasures in interacting with visitors or watching television because the former reflects her long-held values and is cohesive with the rest of Lee’s personal and professional life. It almost seems as if we owe this “rational” version of Lee, who spent so many years crafting a successful career, the dignified death that she desired. However, this position makes a couple of critical presumptions that ought to be interrogated.

2.2.2. Presumption 1: Rational and Reflective Preferences Create More Authentic Narratives

Firstly, authenticity is presumptively equated to preferences that are rational and reflective of one’s life. However, this presumption raises concerns about depriving authentic authorship from many individuals who make important life decisions based on intuition rather than deep reflective consideration. Perhaps these individuals’ lives would be better led if they were more reflective of their past, but making poor or unreflective choices is by no means a disqualifying standard for one to be considered an authentic author of their lives. The criterion of rational reflection also excludes those with intellectual disabilities whose capacity to remember their past is significantly impaired, yet Jaworska recounts several examples of dementia patients who could not recall their past, but would volunteer as research subjects or perform kitchen tasks that felt meaningful to them [16]. Holding rudimentary conversations, watching television or listening to the radio, while not impressive to many, can also constitute authentic authorship of one’s life. For those who view such a life as too purposeless or unsophisticated to constitute an authentic narrative, one might consider a more expanded understanding of narratives as life stories that do not need a driving purpose nor full agential control over one’s circumstances. Narratives from oppressed individuals and non-socially dominant classes demonstrate creative ways in which we can conceive meaningful life-stories that may otherwise be considered meandering or powerless. A more inclusive view of human narratives, including those that are driven by ‘basic’ and non-reflective interests, helps to accurately reflect the variety of narratives woven by a neurodiverse population, and also helps to mitigate ableist judgments about the quality of narratives based on the cognitive capacity of their authors.

2.2.3. Presumption 2: Dementia Constitutes a State of Indignity That Can Justifiably Be Eliminated

Cantor argues that living with dementia is a legitimate state of indignity according to Lee’s personal values, and in fact, we may be abandoning Lee to an undignified life of dementia by disregarding her advance directive. However, the presumption encoded within this argument is that dementia, or living with cognitive impairment, does constitute a state of indignity. Interestingly, research demonstrates that dementia patients self-report a higher quality of life than what their caregivers might perceive [17], and their quality of life is often a multivariate assessment extending beyond cognitive capacity (e.g., demographic factors, behavioral conditions, pain, etc.) that can be addressed with various psychosocial, medical and structural interventions [18].

Even if one could live contentedly with dementia, one might consider the very notion of cognitive deterioration as lacking dignity. However, given the inconsistencies in people’s assessment of advance care decisions about living with acquired disabilities [13], we ought to scrutinize the reasons behind Lee’s pessimistic beliefs about dementia, which may have been influenced by stigmatized depictions of dementia in popular culture [19]. In Point I, Cantor indicates that this is ultimately Lee’s decision about her own body and mind, suggesting that no stigma is communicated by Lee’s personal judgment about dementia failing her cognitive standards for dignity. However, even if we were to grant that living with dementia constituted a state of lesser dignity, to view it as a state of such intolerable indignity that could warrant withholding medication to ensure a premature death would legitimize the underlying ableism that trivializes the preferences and narrative capacities of dementia patients. Additionally, Lee’s current desire to live should invite us to reevaluate the moral asymmetry of the harms that result from retrospectively breaking an end-of-life directive versus committing an irreversible mortal harm to someone who wants to live.

Clinicians who are confronted with situations like that of Lee are in a difficult position to make a decision that serves the patient’s best interest, especially when their goals of care seem fractured by past commands and current preferences. However, arguments about respecting prior rational autonomy to achieve a ‘dignified’ death should not be blindly followed without serious consideration about who is authoring the patient’s life narrative. Family members may provide additional insight, such as Yuna (Lee’s adult daughter), but even families are not free from potential stigma, ill will or unconscious biases that run contrary to the patient’s expressed preferences and lived experiences [17,20]. Demonstrating curiosity about the patient’s past and the family’s relationship to the patient are undeniably critical to medical decision-making, but it should not overshadow considerations about who the patient is today, what preferences they can assert and what non-standard narrative they may be weaving now [21]. Contextualizing the principles of non-standard narrativity with the provider’s duty to care for their patient serves as a critical reminder that people may respond to disability in unexpected yet authentic ways, and when a dementia patient expresses their desire to live, clinicians should listen.

3. Conclusions

Dementia and the Moral Contours of Advance Care Planning

As the global prevalence of dementia steadily rises [22], ethical conundrums akin to those examined here will only become more frequent, placing clinicians and caregivers on the front lines of anguishing moral dilemmas that defy easy resolution. In addition to the clear impacts these decisions can have on patients and families, these decisions, or cognate indecision, may also weigh heavily on clinicians who may experience moral distress when uncertain or conflicted about the appropriate course of medical action to take [23,24]. In contemplating the ethical and philosophical intricacies of advance directives for patients with dementia, Cantor and Choi highlight the potential for tension when honoring an individual’s past decisions while engaging with their currently articulated expressions, which may at times appear to conflict with previously articulated values, preferences or goals.

Cantor’s robust defense of precedent autonomy, rooted in well-established legal and ethical norms, emphasizes the overriding force of one’s prior, competent wishes as a source of self-determination and safeguard of autonomy. Empirical work has corroborated the value of advance care planning in preserving the autonomy of patients with dementia later in life [25,26]. Conversely, Choi challenges this stance by foregrounding the dynamic nature of human identity and possible refiguration of self-narrative, and the potential for discovering newfound meaning in life stages once dismissed as untenable by the patient’s earlier self. This dialog crystalizes a pressing normative question: how do we optimally balance a patient’s historical self-conception with their present interests and desires, when narrative coherence [27] and full-fledged competence appear irretrievably lost?

No simple formula exists for solving these vexing dilemmas. Discerning the appropriate course of action when navigating these challenges requires that clinicians not only understand the relevant ethical principles, but also that they aim toward sensitive, context-aware reconciliation of these principles with the uniqueness of each patient’s life as it unfolds in real time. Informed discourse on the moral authority of advance directives may therefore benefit from an adaptive approach that considers not only the cognitive competencies of patients but also their current sources of joy, meaning, value and engagement. In navigating these complexities amidst unavoidably anguishing, high-stakes decision-making, clinicians must recognize that, although these tensions evade straightforward resolution, it is precisely through well-considered ethical deliberation that patient dignity is optimally preserved.

The focus of this article has been on the role medical clinicians face in surrogate decision-making rather than that of family care givers or other agents representing patients. At the least, family perspectives must be considered when interpreting advance directives and understanding what the patient would want. Beyond that, these family agents face a conundrum similar to that facing clinicians. On a legal plain, they are bound to implement a patient’s clearly expressed advance wishes to forgo treatment, but in practice they, like clinicians, may be troubled by a non-suffering patient’s current satisfaction and by the non-comprehending but life-affirming current utterances of the patient.

How will similar scenarios play out over the next 10 or 15 years? Discoveries in Alzheimer’s therapeutics may slow cognitive decline following diagnosis, presenting a more extended period to engage in advance care planning discussions. And research discoveries may produce some quality-of-life enhancements. However, the legal and moral dilemmas explored in this article will remain pertinent whenever dementia advances to a point of severe impairment. The discussed tensions between a robust autonomy regime promoted by law and moral qualms troubling persons charged with the implementation of advance directives will likely persist.