February 28, 2024

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Flaws in advance directives that request withdrawing assisted feeding in late-stage dementia may cause premature or prolonged dying | BMC Medical Ethics

19 min read
  1. 20.

    Strategies to Compel Orders by Treating Physicians = SCOTP (0)

Most state laws let physicians decline to comply with a directive’s request if the physician deems it “requires medically ineffective health care or health care contrary to generally accepted health care standards” [70] or “for reasons of conscience” [71]. These options are reasonable. The first strives to protect patients; the second respects health care providers.

But some physicians presume they know patients’ “best interest” better than the planning principals who diligently deliberated to make advance treatment decisions based on their personal values. Currently, some physicians have conflated the authority to write orders (that their state medical board granted) with the authority to decide what orders to write (that no entity has the power to grant). It is contrary to law and ethics for physicians to make decisions for their patients. Proxies/agents can quote probate code such as: “A health care provider…providing care to a patient shall…comply with an individual health care instruction of the patient…to the same extent as if the decision had been made by the patient while having capacity” [72]. Proxies/agents can engage consultants to warn treating health care providers that if they write orders that do not reflect patients’ known wishes in good faith, they can lose immunity and be sued criminally, civilly, and their licenses may be sanctioned administratively. If it is easy for physicians to not write orders that conform to planning principal’s conditional request to cease assisted feeding, then patients may be forced to endure a prolonged dying.

  1. 21.

    Physicians Require Additional Clinical Criteria = PRACC (2)

If strategies are not in place to prevent health care providers from requiring additional clinical criteria before honoring a directive, the new directive that providers create by such additions may not reflect planning principal’s end-of-life goals. Adding criteria may reflect the hesitancy of health care providers to carry out the irreversible act of allowing a patient to die. AuthoritiesFootnote 24 who require patients to fulfill additional clinical criteria may be well-meaning and want to prevent premature dying; yet to our knowledge, no authority has ever provided clear and convincing evidence to prove they know better than planning principals, the best interest of a now-incapacitated dementia patient.

Below are four examples:

  1. (A)

    Menzel [46] asked this rhetorical, morally provocative question: “If someone has a clear directive that food and water by mouth be withheld when she reaches a certain stage,Footnote 25 but when she reaches this stage still appreciates life and wants to eat and drink, are we actually going to withhold food and water from her?” Original emphasis. The obvious answer, “No,” provided Menzel a segue to introduce his new philosophical concept: being able to appreciate living. In Menzel’s words: “Withholding food and fluid by mouth [depends]…on discerning two key points: when the dementia patient meets the triggering conditions in the person’s advance directive, and when the person’s continued stake in survival is sufficiently low.” Emphasis added.

  2. (B)

    AMDA’s Policy A19 [56, 57] “recommend[ed] against implementing SED [stopping eating and drinking] by AD [advance directives] in those patients who still accept food and fluids, implementing instead, a policy of comfort feeding for those with advanced dementia…as long as the resident is not showing signs of distressFootnote 26…or refusalFootnote 27” [56, 57]. AMDA’s justification was (in part): “We not only show our patients that their current existence is less meaningful, we shorten their lives…[if] we implement SED by AD.”

  3. (C)

    Ladislav Volicer et al. [73] (henceforth, Volicer) added this required criterion: physicians should wait to honor patients’ directives until patients no longer request assisted feeding. Volicer strived to respond to AMDA’s policy, as he assumed patients would stop requesting to be fed (or refuse feeding) well before they manifested distress from the act of feeding.

  4. (D)

    Walsh wrote, “Having dementia is a cognitive transformative experience and…preference changes which result from this are legitimate and ought to be given moral weight in medical decision-making. This argument ought to encourage us to reduce our confidence in the moral weight of advance directives for dementia patients” [74]. Walsh’s philosophical concept can be used as a general justification by those who oppose honoring directives that request assisted feeding to cease. (It is beyond the scope of this article to discuss whether Walsh’s concept expands the perspective introduced by Dresser [75], whose work Walsh did not cite.)

Omitting strategies to let “Physicians Require Additional Clinical Criteria” may cause harm:

The three semi-fictional cases below include Case I and Case II that contrast a capacitated patient’s claim right to contemporaneous Voluntarily Stopping Eating and Drinking versus a physician’s unilateral refusal to honor a similar request that an incapacitated patient made in advance via his directive. Case III illustrates how knowing that such refusals are likely can lead to devastating harm.

Case I A 96-year-old woman is medically well, but lives alone, is lonely and bored with life. She outlived her husband and all close friends. Loss of hearing and sight has vastly diminished her ability to enjoy life. She decided to express her love for her offspring by the most tax-efficient way to transfer her assets: to die. Family members and professionals tried but failed to dissuade her from her plan. She has the legal right to die by Voluntarily Stopping Eating and Drinking (VSED). Her physicians are not legally permitted to impose their values; they cannot override her decision by force feeding, either by tube or mouth. This has been the law in California since Bouvia (1987) [76], and in the US since Cruzan [6, 11] (1990). While she may be required to respond in a clinical interview to demonstrate she has capacity, she is otherwise not obligated to justify her reasons. Note that since she has capacity, her decision is not dependent on an advance request in a directive.

Case II A planning principal diligently and deliberatively created a directive that prioritized his lifelong critical interests over his future experiential interests, so that his life narrative could continue as best as possible after he lost capacity. His directive stated: “I want my estate to fund my grandchildren’s university education, to help them start their businesses, and especially to avoid ‘medical bankruptcy’ due the expense of my care [77]. I therefore request stopping all life-sustaining treatments that includes ceasing assisted feeding, when I no longer can enjoy life due to advanced dementia or another terminal illness.”

The treating physician adamantly refused to honor his directive. She explained: “Financial considerations should never determine the time of dying.” She insisted his request was contrary to generally accepted health care standards. Since she expressed her belief as if it were the professional norm instead of her personal conflict based on conscience, she was not obligated to make a reasonable attempt to transfer the patient to another, willing provider.

While well-meaning, the physician’s refusal dismissed the patient’s known lifelong values and imposed instead her own version of the patient’s “best interest.” This act of paternalism caused harm to the patient and his family members. His grandchildren were deprived of attending their top choice of universities; no funds were available to help start their new businesses; and, in less than three years, the family had to file for bankruptcy.

The patient suffered in two ways. He was prevented from sparing his family financial harms, and the ordeal left tarnished memories. His disease would forever be seen as the cause of his family’s great financial hardship. (While the patient could not be contemporaneously aware of this tragedy due to incapacity, society does not insist on awareness for the dead [78] as a prerequisite to avoid harm. Hence, society would similarly not insist on capacity for those who are either living or have died from advanced dementia.)

Case III After receiving the diagnosis of early dementia, a patient diligently researched the internet, made some phone calls, and reached this sad conclusion: he did not trust his future physicians would honor the requests in his directive and allow him to have a timely dying. This “Dementia Fear” caused him daily worry. Worse, he realized that if he waited too long to hasten his dying, he could become “stuck” for years in advanced dementia. While his decline in cognitive functioning was currently slow, he also feared an acute event such as a serious infection, head injury, or fall could lead to a sudden but devastating decline in physical or mental incapacity. If such an event led to his being admitted to a hospital or institution, its goldfish bowl environment would cause him to forever lose the opportunity to hasten his dying.

While he still enjoyed Dixieland jazz, international cuisine, and spending time with his children and grandchildren, he took definitive action to hasten his dying. He bought OTC items to decrease his thirst, asked his primary care physicians to prescribe a month’s supply of anti-anxiety medication, and then Voluntarily Stopped Eating and Drinking (VSED). His son remained by his side as he died peacefully.

Norman Cantor wisely commented, “Undertaking self-deliverance at an early stage of dementia entails the hazard of cutting short an existence that is still enjoyable (and might continue to be so for some unknown period)” [79]. Thus, omitting strategies designed to prevent Physicians [from] Requiring Additional Clinical Criteria (PRACC), can lead to the tragic harm of unnecessarily sacrificing years of reasonably good living. In other words, it can be patient-determined premature dying in response to intense worrying about prolonged dying.

The flaw, “Physicians Require Additional Clinical Criteria” (PRACC) may violate the four principles of bioethics [80, 81]:

Unilaterally changing the triggering criteria of advance directives for patients who cannot give their informed consent due to incapacity, but who previously made advance treatment decisions when they had capacity, does not respect patients’ right to self-determination. It thus violates the principle of autonomy.

The relentless downward trajectory of advanced dementia eventually renders patients unable to enjoy life. Prolonging the process of dying without improving patients’ lives violates the principle of beneficence.

Prolonging dying may increase and definitely prolongs various types of suffering—especially if not recognized or treated. This violates the principle of non-maleficence.

The cost of providing care for advanced dementia patients notoriously increases as patients’ ability to benefit decreases. Scarce medical resources could instead provide more benefit with less harm to other patients. Prolonging dying thus violates the principle of social justice.

  1. 22.

    Undermining Planning Principals’ Authority = UPPA (6)

Some who oppose orders to cease assisted feeding use a common conflict as a “conceptual wedge” to assert their values. Bioethicists have been debating how to resolve this conflict for three decades [82], so this article refers to it as the “classic conflict.”Footnote 28 After the physician writes and implements an order to cease assisted feeding (which reflects the past planning principal’s preference), the currently incapacitated dementia patient nonverbally points to the food and fluid placed in front of her, then points to her mouth and grunts. Some patients can say, “Gimme,” but even nonverbal gestures may be clear enough for all to correctly interpret her desire for assisted feeding to resume. This is how the “classic conflict” emerges. It leads to debate over whether to honor the past or the current version of the patient’s wishes.

Opponents of the order to cease assisted feeding can use the “classic conflict” as a “conceptual wedge” to increase their power. For example, AMDA’s ethicists argued, “We either violate the entire concept of advance directive and practice an injustice against the person as they once were; or we refuse to feed our patient and practice an injustice against who they are now” [56, 57]. Emphasis added. While it is true that there is no widely accepted way to resolve the “classic conflict,” this does not give AMDA’s ethicists the right to recommend that AMDA providers should be appointed as the responsible parties to resolve the “classic conflict.” So, using the word “we” twice is  presumptuous and paternalistic.

A logical flaw was overlooked as AMDA’s ethicists argued for the adoption of Policy A19: the fallacy of bifurcation. The ethicists falsely presented the ethical dilemma as if only two options existed; that is, as if no other options were possible. Below, this article discusses other workable options. In addition, the ethicists committed the flaw of extrapolation, which makes their practice of paternalism more egregious. They categorically insisted that “The Society affirms the right of all…residents to receive comfort feeding until their behavior indicates refusal or distress.” Emphasis added.

Four ways to overcome such formidable challenges: first a list, then more details

  1. (A)

    Argue that “experts” are proposing a new clinical practice guideline while eschewing a rigorous developmental process;

  2. (B)

    Explain how their guideline is flawed;

  3. (C)

    Explain how their guideline violates prevailing law; and,

  4. (D)

    Offer a strategy that can be implemented during advance care planning that is designed to prevent the “classic conflict” from emerging—to render these arguments moot.

  1. (A)

    Eschewing a rigorous development process for a new clinical practice guideline

We are not aware of any currently available “dementia” directive that has undertaken the rigorous process of developing a new “clinical practice guideline” that “translates best evidence into best practice by emphasizing a logical sequence of key action statements supported by amplifying text, evidence profiles, and recommendation grades that link action to evidence” [83, 84]. This process can take a year or more. It involves collecting data from health care professionals and patients via focus groups and surveys, and running pilot trials that are analyzed to make improvements by an iterative process.

Empirical research in the field of advance care planning for late-stage dementia is rudimentary. Example: Santulli et al. held six workshops with 170 subjects; 40 completed their questionnaire; 27 answered “Yes” to, “Will you complete a directive for dementia for yourself?” Evidently, no follow-up was reported regarding what these few subjects actually did [85].

  1. (B)

    The proposed recommendations are flawed

Menzel’s additions to planning principals’ directives [46] have four flaws: (A) it provides no guidance on how clinicians can determine with sufficient medical certainty whether a patient’s stake in survival is, or is not, “sufficiently low” to be allowed to die; (B) the directive does not refer to a validated scale and suggest a cutoff score; and (C) Menzel does not specify who qualifies as a judge. (The issue of existence is broader than medicine, so non-physicians could qualify.)

Menzel’s fourth flaw is most worrisome: (D) He explicitly authorizes an unspecified third party to observe and interpret the behavior of nonverbal patients regarding whether patients do, or do not, value their own lives. Consider his example, “Sheri.” She “can hardly be said to value her survival or have a stake in her continued existence, for her cognitive deficits prevent her from even anticipating it. Survival—future existence—does not much matter to her now.”

Many moral leaders consider it wrong for one human being to judge whether the life of another human being is worth living. Implementing this practice could start a “slippery slope” that could (again) end in a humanitarian disaster [86].Footnote 29

Regarding Volicer’s proposal [73], the question is, where shall the bar be placed for patient’s decisional capacity to honor their requests for assistance with eating and drinking (Volicer’s words)?Footnote 30 Jaworska opined that if people with dementia can value activities and experiences in their lives, as demonstrated by explaining their choices, then their current decisions ought to override the requests in their directives [87].

The key question is: how low can a behavioral bar be placed, to fulfill Jaworska’s value requirement (for assisted feeding)? Does merely opening their mouths and swallowing what others put in suffice? Does smiling when fed? Does uttering, “Mmmm”? Those concerned about the patient’s well-being might also consider the balance: has the patient reached a condition that she previously judged would cause severe suffering?

Walsh’s article [74] and its 17 open-peer commentaries did not fully consider the goal of avoiding pain and suffering as a durable personal value. Yet every competent adult American has the claim right [88] to avoid severe suffering,Footnote 31 and this right transcends loss of capacity. Advanced dementia patients are likely to experience more suffering than most health care providers currently appreciate since patients cannot complain and providers’ view of suffering may be narrow. Similarly, about 40% of patients presumed to be in the persistent vegetative state are misdiagnosed [89], so they are likely capable of experiencing pain and suffering.Footnote 32

  1. (III)

    Protocols that Undermine Planning Principals’ Authority (UPPA) may violate the spirit and letter of laws that discourage physicians from making treatment decisions on behalf of their patients. Consider four points:

    1. (C.1.)

      In many jurisdictions, treating physicians cannot legally serve as their patients’ proxies/agents. The intent of the law is to avoid a potential conflict of interest by reducing the power of treating physicians.

    2. (C.2.)

      If a conflict emerges between the health care instructions in a patient’s directive and the contemporaneous instructions of the currently acting proxy/agent, the instructional directive has legal priority (not the physicians’ judgment of “best interest”).

      Example: Cynthia Cardoza [90] sued her mother’s physicians for causing the patient to suffer; for denying the patient’s right to die with dignity; and for forcing Cynthia to experience severe emotional distress. The physicians/defendants claimed immunity by citing California Probate Code §4740 and stated they had complied “with the health care decision made by a person whom they believed was authorized to make this decision” (plaintiff’s brother). Emphasis added. But a California appeals court ruled that defendant physicians did not act in good faith because when these physicians ordered life-sustaining treatment and performed surgery, they had known that the patient’s directive had refused such curative treatment in advance.

    3. (C.3.)

      A semantic argument: since instructional directives have higher priority than proxies/agents who are legally designated by durable powers of attorney for healthcare decisions, instructional directives must also be durable.

    4. (C.4.)

      The Federal Patient Self-Determination Act of 1990 [91] states that providers may “not condition the provision of care or otherwise discriminate against an individual based on whether or not the individual has executed an advance directive.” Some interpret the PSDA as forbidding providers from discriminating by refusing to treat patients based on (otherwise) disagreeing with patients’ treatment decisions.Footnote 33

  2. (IV)

    A proposed strategy that is designed to prevent the classic conflict from emerging

To overcome this flaw, Undermining Planning Principals’ Authority (UPPA), strategies can be added that are designed to increase the power of proxies/agents. This topic is discussed next.

  1. 23.

    Undermining Proxies/Agents’ Power = UPAP (5)

AMDA’s Policy A19 [56, 57], does not advise physicians to meet their ethical and legal obligation to consider the substituted judgment of proxies/agents. Instead, A19 advises, “Although [our policy to refuse] may be an issue where common ground cannot be found with the health care proxy, the provider must engage with them and fully explain the rationale behind the choice to refuse to implement SED [stopping eating and drinking] by AD [advance directive].” Emphasis added since using “engage” and “explain” is consistent with their position being intractable. (This advice is repeated to indicate the challenge is formidable.)

To change physicians’ practice, a precedent-setting lawsuit or passing new laws may be required. Both can take much time and effort. Neither can guarantee success.

Professor Thaddeus Pope generally suggested using an irrevocable Ulysses contract to overcome the kind of challenges that Margaret Bentley experienced [92], which might overcome this flaw. This article recommends specific strategic details below.

Directives can present planning principals four or more choices of authorities to determine who should determine whether to honor the patient’s past or present expression of wishes:

  1. (A)

    Their future treating physician. While this choice may at first seem to embrace AMDA’s Policy A19, the ethical difference is significant. This proposal asks patients if they want to make this choice voluntarily, which may depend on the patient trusting her physician’s promise to fulfill her directive’s requests. In contrast, A19 imposes this choice on incapacitated patients without their knowledge or consent. In the case of AMDA’s A19, the breach of trust is worse since the ethicists anticipated providers would have by then known that the requests in planning principals’ directives were the exact opposite.

  2. (B)

    The planning principal’s “future demented selves,” as Volicer recommended. This choice is consistent with laws in many states that explicitly waive the capacity requirement for patients to receive life-sustaining treatment upon request [93].Footnote 34 As reviewed above, many European countries allow patients to revoke their directives, regardless of capacity [37]. This option is a weak strategy for honoring controversial requests in patients’ directives since the “future demented self’s” behavior is unpredictable.

  3. (C)

    Allow the proxy/agent 100% leeway to make this decision based on their substituted judgment that strives to consider patients’ values and what would be in patients’ best interest. Success is required at two levels. First, proxies/agents’ instructions must accurately reflect the patient’s wishes, which is problematic given the concordance problem. Second, proxies/agents must persuade the future treating health care provider to follow their controversial instructions. Opponents can challenge the proxy/agent’s motivation, or refuse to honor their instructions unless they provide clear and convincing evidence regarding what the patient would have wanted in the current condition. In addition, when the time comes to act, the first choice for the trusted proxy/agent may not be willing, available, or capable, and the alternate may not be as trusted, effective, or knowledgeable. This option may therefore promptly fail or lead to a prolonged conflict.

  4. (D)

    The strongest strategy to make the memorialized requests in directives irrevocable is to empower proxies/agents to advocate the requests embodied in the directive. This requires two legal steps, First, planning principals must waive their future right to apparentlyFootnote 35 object to their proxies/agents’ instructions. Second, the planning principal must sign a separate bilateral contract with each proxy/agent and alternate, whereby each proxy/agent promises to serve as a steadfast advocate to honor requests in the patient’s directive.

Note: planning principals can select other categories of individuals to consummate this bilateral “Ulysses contract.” They include community leaders, secular or religious counselors, or a specific individual such as a relative who, for example, is an attorney or physician.

While it takes time and effort to obtain additional signatures, this protocol may prevent a prolonged classic conflict from emerging. If so, opponents cannot use this conflict as a conceptual wedge to justify imposing additional clinical criteria on their patients.

  1. 24.

    False Interpretation of Behavior Observed = FIBO (3)

This flaw is discussed last for three reasons: it refers to previously presented examples; the flaw needs to be appreciated as being broadly applicable; and this flaw might inspire the humility needed to overcome paternalism.

This flaw is omitting strategies that challenge physicians and others from assuming their interpretation of an incapacitated patient’s nonverbal, observed behavior accurately reflects what the patient would want.

Jongsma wisely wrote that “changed behavior should not be taken at face value to indicate the development of a new value. Not being able to confirm earlier made decisions, or opposing what was important to this person, is part of the tragic decline and deprivation caused by dementia and should not be understood as an indication that these measures are now acceptable” [94].Footnote 36 Emphasis added. A relevant example is a patient who passively opens her mouth to accept what others put in (sometimes, after much coaxing).

Misinterpreting patients’ behavior can lead to false negatives or false positives, the magnitudes of which are not known. As illustrated by the four examples below, misinterpretation can lead to either premature or prolonged dying. Definitions: a “false negative” means patients only seem to reject food and fluid but they really want to live; a “false positive” means patients only seem to want assisted feeding to continue but they really want to be allowed to die of their underlying disease.

Case A’s nonverbal behavior The patient stops requesting assistance with eating and drinking (Volicer’s criterion):

Specific observation The patient is silent or indifferent when offered assisted feeding.

Interpretation The patient wants to die.

Action Physician writes the order to cease assisted feeding. The patient dies.

Reality: False Negative. Dementia caused severe brain damage that limits the patient’s ability to nonverbally express her wish to be fed and to live.Footnote 37 (Masked facies is also possible.)

Conclusion Misinterpretation led to premature dying.

Case B’s nonverbal behavior The patient refuses food and fluid (C&C’s Tool, End of Life Washington’s Instructions, AMDA’s A19):

Specific observation Patient turns her head, clenches her mouth closed, or spits out what others put in her mouth.

Interpretation The patient wants to die.

Action Physician writes the order to cease assisted feeding. The patient dies.

Reality: False Negative. Unrecognized, untreated pain in the patient’s mouth or GI tract could have been the factor that led the patient to refuse food and to not chew or swallow.

Conclusion Misinterpretation led to premature dying.

Case C’s nonverbal behavior The patient cooperates with assisted feeding without distress (Principle of Proportionality and AMDA’s A19):

Specific observation Patient cooperates: she opens her mouth and swallows what others put in.

Interpretation Patient wants to live.

Action Physician writes the order to continue assisted feeding instead of honoring the request expressed in patients’ directive (which lists other sources of suffering). The physician forces the patient to wait until the physician can interpret the patient’s nonverbal behavior during assisted feeding as distress.

Reality: False Positive. The patient wants to die because she has reached a condition(s) that she previously judged would cause severe suffering from other sources and/or her disease burdens her loved ones. The patient seems to cooperate only because caregivers tap her lips or chin and thereby evoke her primitive reflex to open her mouth, and she then automatically swallows whatever they put in. She is merely continuing her lifelong habit of eating (now, being fed) three or four times a day. Dementia caused her to lose capacity, so she forgot and is unable to appreciate the negative consequences of continued assisted feeding.

Conclusion Misinterpretation led to prolonged dying and suffering—the exact opposite of what the planning principal wanted, that motivated her to complete her directive.

Case D’s nonverbal behavior The currently incapacitated patient actively requests assisted feeding to resume, but this request conflicts with her previously expressed wish to cease assisted feeding, as memorialized in her directive. (This is the classic conflict.)

Specific observation The patient reached a condition(s) that she previously judged would cause severe enough suffering to cease assisted feeding. Her physician honored her directive by writing an order to cease assisted feeding. But after a few days, the patient pointed to the food and fluid placed in front of her, and then pointed to her mouth and grunted.

Interpretation Patient has changed her mind: she wants to be fed and to live. Her nonverbal behavior revokes her directive. The law errs on the side of life by explicitly not requiring her to have capacity to receive requested life-sustaining treatments.

Action Physician writes an order to resume assisted feeding that sustains the patient’s life.

Reality: False Positive. The patient wanted to die to avoid personal suffering and to spare her family members the burdens of her disease. Her behavior can be explained in several ways. She sees food and fluid in front of her but cannot understand why her caregivers have ceased assisted feeding. She is thirsty due to a temporary lapse in palliative care. She is hungry since ketogenesis has not yet decreased this symptom. Lack of capacity has led her to forget and to be unable to appreciate the negative consequences of continued assisted feeding that include her personal suffering and burdening her loved ones.

Conclusion Misinterpretation led to prolonged dying and suffering—the opposite of what the planning principal wanted, which was precisely why she completed her directive.

Conclusions about the flaw, False Interpretation of Behavior Observed (FIBO):

Physicians are not on solid clinical ground if they rely on interpreting their patients’ contemporaneous observed behavior as the basis for deciding whether to continue or to cease assisted feeding. Misinterpretation may cause premature dying for patients who want to live, or force patients to endure prolonged dying when they want to be allowed to die based on their severe suffering from other sources.


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