Background
A couple months ago, NPR featured a news story titled “If You Have Dementia, Can you Hasten Death As You Wished?” The news story discusses the case of Margaret Bentley, a former registered nurse, who decided, and even expressed in a written will, years ago that she wanted to stop eating if she ever became completely disabled. However, now, she has sunk so far into dementia that she needs the help of other people to carry out the wishes that she had expressed while she was competent. Margaret Bentley’s case has resulted in a conflict between the administrators of her nursing home who do not want to carry the wishes she expressed when she was autonomous while her family wants her to be allowed to die.
For a while, the family hoped she would die peacefully in her sleep. However, as the years dragged on, Bentley became progressively more demented, and her family continued to fight to put her living will into action. By 2011, 8 years after being institutionalized, Bentley was living at her second nursing home. At this point, the aides were doing everything for her “including diapering, moving, lifting and feeding her”. The aides as well as the Fraser Health Authority collectively decided that it was time to stop giving her food and water. However, one person at the nursing home, did not want to stop feeding Bentley because she would open her mouth when they brought a spoon to her lips which he or she believed signified that she actually did actually want to eat. However, the daughter insists that it is simply a reflex and that her mother opens her mouth even when the spoon is empty.
Dilemma
Should the caregivers work with the family to carry out the wishes that Margaret expressed while she was fully competent? Or should they grant Margaret’s immediate wishes who wants to eat when she is hungry?
Reflection
In this particular case, I would have to agree with the Margaret’s family rather than the aides. The most ethical course of action would be to respect and carry out the wishes that Margaret expressed while she was a competent individual. It is unethical to go against Margaret’s wishes because she gave clear directions of what she wanted to happen if she were to be disabled while she was autonomous, and it is unethical to go against a patient’s autonomy.
The specification used for autonomy is that the patient must be competent in order to make autonomous decisions. Thus, a possible argument that one of the aides would make would be that because Margaret is currently incompetent, then she cannot express any of her immediate wishes or any changes in her decision. Because she is currently incompetent, then she does not meet the requirements to carry out the autonomous decisions she made when she was competent. Therefore, it is important to continue feeding her because as an incompetent patient, she may not be able to express what she does or does not want in the present moment as opposed to what she may have wanted in the past. However, I find this counterargument morally questionable and problematic. Because Margaret is clearly an incompetent patient suffering from Alzheimer’s, then why is it automatically assumed that she wants to eat and continue to live because she opens her mouth when a spoon is placed in front of her? If she cognitively unable to refuse food because of her condition, then shouldn’t her immediate actions be interpreted with more skepticism? Moreover, it is clear that Margaret lacks to the ability to reason when she opens her mouth even when the spoon is empty. Alzheimer’s has prevented Margaret from expressing that her end-of-life plan be executed in the immediate moment. Margaret expressed clear preferences not to be fed food and water when reaching a particular condition, and those advance directives should be respected.
In the “Beneficence” chapter of PBE, Beauchamp and Childress outline three different standards that have been proposed for surrogate decision makers for incompetent patients. The three standards are the substituted judgment, pure autonomy, and the patient’s best interests (Beauchamp & Childress 226). The substituted judgment standard requires the surrogate decision maker to “make the decision the incompetent person would have made if competent” (Beauchamp & Childress 227). The pure autonomy standard is “asserts that whether or not a formal advance directives exists, caretakers should act on the patient’s prior autonomous judgments” (Beauchamp & Childress 228). Lastly, the best interest standards protects seeks “to protect and incompetent person’s welfare interests by requiring surrogates to assess the risks and probable benefits of various treatments and alternatives to treatment” (Beauchamp & Childress 228). When applying the substituted judgment standard and the pure autonomy standard, Margaret’s advance directives should not be overridden, and the aides should stop feeding her food and water. Margaret clearly outlined that she wanted to stop eating if she became disabled which automatically answers any questions about what she would of wanted or what her decision would have been if she was autonomous. According to Beauchamp & Childress, the best interests standard is the standard often used to override a patient’s advance directive. However, even if the best interest standard is applied to Margaret’s case, it is still not morally ethical to continue feeding her. Over time, Margaret has become increasingly disabled and needs help to do anything including moving, eating, and diapering. There are no benefits to continue feeding her to keep her alive because her cognitive and motor abilities will not improve. Because there are no real benefits, the best interest standard cannot be used as justification to override Margaret’s advance directives. Moreover, the NPR article writes that death “brought by cessation of eating and drinking might sound scary in prospect, but it’s said to be relatively painless if done correctly” (Hening). Thus, if not feeding Margaret does not causes her immediate pain or harm and is is respecting her autonomy, then her advance directives should not be overridden.
It’s also important to highlight that Margaret worked a registered nurse, and was probably very familiar with conditions such as Alzheimer’s and how previously competent people lived when they became disabled. Margaret’s decision to stop being fed was likely to be a well-reasoned decision that should continue to be respected though she is not able to express them in the present moment. Also, why are the aides, rather than the immediate family, making the surrogate decision for Margaret? The aides of the nursing home are assuming that they know what is better for Margaret than her immediate family. The immediate family probably understands Margaret’s values and wishes far more than the aides who are not familiar with how Margaret was before she was diagnosed with Alzheimer’s. Margaret’s family should be allowed to assume the role of being the primary surrogate decision-makers in order to allow Margaret to end her life the way she clearly wanted as expressed in her will.
Work Cited
Hening, Robin. “If You Have Dementia, Can you Hasten Death As You Wished?”. National Public Radio (NPR). 27 Mar. 2015. Web. 10 Feb. 2015.< http://www.npr.org/blogs/health/2015/02/10/382725729/if-you-have-dementia-can-you-hasten-death-as-you-wished>
Beauchamp, Tom L., and James F. Childress. “Beneficence” Principles of Biomedical Ethics. Seventh ed. New York: Oxford UP, 2013. 222-241. Print.
Since the patient did work as a nurse and was likely exposed to patients with dementia, as you stated, she most likely did make an informed decision, and if the case had involved some invasive treatment that she now seemed to consent to as a patient who was not fully aware of what was going on around her, I would agree that it is right to go with her decision back when she was competent rather than with the fact that she seems to be going along with the treatment now. However, the case here is a matter of removing basic sustenance from a patient. Although it was expressed that she did not want to continue to eat or drink with if she had to live a poor quality of life (which she drew at being “completely disabled,” as you stated), I still have a problem with withholding basic sustenance (not highly invasive/extraordinary forms of treatment) from a patient.
The fact that Margret Bentley is a burden on her family motivates her beloved daughter to ask to execute her mother’s will. Yes, Margret stated in her will that she doesn’t want to be fed if she ever became disabled. Yes, she was competent at the time of her will, and now she is incompetent. However, in the nursing home, she opens her mouth when they give her food. Patients have the right to change their mind about their will, autonomous decision and informed consent. Her daughter says, there is a probability that her mother opens her mouth as a reflex when the spoon touches her lips; however, is swallowing food and drinking water a reflex too? Is the daughter sure that Margret Bentley really wants to terminate her life at the current time? In this case, both the substituted judgment standards of the surrogate and the pure autonomy standard of the caretaker conflict with the patient’s best interest. According to Beauchamp & Childress, the surrogate, in a substituted judgment, is entailed to make a decision that an incompetent person would have made if they were competent (227). The caretakers, in the pure autonomy standard, ought to act on the patient’s prior autonomous judgments (228). However, the patient’s best interest demands that the surrogates must weigh the risks and probable benefits of different treatments and its impact on the patient’s welfare and wellbeing (228). This is the only standard that can be applied to override Margret’s advance directive. Terminating Margret’s feeding may directly lead to her death. This means that the caretakers, with the acceptance and under the supervision of the physicians, are aiding Margret in committing suicide or terminating her life in the name of respecting her will or advance directive. Similar to the notion of physician-assisted suicide (PAS), the physicians’ acts are considered euthanasia as they voluntarily and knowledgeably comprehend that the cessation of feeding will eventually lead to her death. This case serves as an example of what may happen if PAS is legalized. Seniors, disabled, Alzheimer’s and dementia patients, people with terminal illnesses, and many more will seek to stop being burdens on their loved ones and will be forced to ask for PAS as an available option. However, Margret decided, when she was competent, not to be fed especially if she was in a disabled state. So the question is, “Where do you draw the line for doctors not to be obliged to execute the patient’s advance directive, will, or autonomous decision when the patients’ desire conflicts with the doctors’ role as medical care providers and not those known to terminate life?” It is hard to be disabled; it is harder to feel that you are a burden; but the hardest thing is when we forget we are humans and that our value of life declines with disabilities and illness.
Generally, in medicine and in the current practice, if a person has an advanced directive which they devised when they were competent then the physician has to honor it regardless of their situation or severity of presentation. They don’t consider reflexes and other neurological factors in ensuring that the patient gets what they wanted all along. If they chose to hold their feeding during disability or during a state of altered mental status then physicians have to honor their wishes. However, regardless of the situation, I personally see no justification with starving a patient to death. The patient’s best interest standard can override Margret’s advance directive or autonomous decision.