Dementia Patients’ Denied Rights:
Voluntarily Stopping Eating And Drinking
Adrienne Heasty
County College of Morris
The healthcare system places emphasis on involving patients in their plan care throughout the disease or healing process. Nurses and other members of the healthcare team are responsible to ensure that the competent patient has the right to refuse any medical treatment. Patients can have an active voice in their treatment throughout their disease process by clearly stating their treatment requests in an advanced directive. Patients who file advanced directives are warranting their current wishes are met in the event that they are no longer able to make decisions for themselves. However, an advanced directive (AD)
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Although Sheri carefully articulated her wishes for end of life care, she ended up in a circumstance all too common for people with dementia. There is a limbo for dementia patients; where their decision making for end of life care “typically lies between the last opportunity to act decisively and the time when dementia’s severity is deemed to make death preferable.” (Menzel and Chandler-Cramer 2014, p.25) The nursing home staff argues that Sheri’s “then-self” may have had different wishes than her “now-self” and there is no clear way for Sheri to currently communicate her current demands. Therefore, the death Sheri requested was denied and she will live out the full course of her dementia in a nursing home. Sheri is not alone in her fight to hasten death. There are many stories similar to hers. One in particular is the case of another person with dementia named Judge Robert Hammerman. (Pope 2011) Hammerman defined a life of living with dementia as "breathing, not really living." (Pope 2011, p. 374) He described his battle with dementia and highlighted the limitations he faced daily. Losing his memory, having a harder time completing simple tasks, and the possibly of needing to be institutionalized all contributed to his decision of taking his own life, without medical assistance. He did not have the same end of life options as other illnesses, such as cancer, and committed suicide. Perhaps if Hammerman was able to ensure
The worst outcome, to her, would be to think that this time he really does want to die and then to feel as if she might have been wrong” (Henig 170). This statement by Battin provides the reader insight into the mindset of a committed euthanasia proponent. She fears making the wrong decision will either allow Hopkins to live, or a wrong decision that causes Hopkins to
Key legislation that relates to the fulfilment of rights and choices and also minimises the risk of harm to an individual with dementia is:
The need for older people to have their autonomy to make a decision and be an active partner in the decision making process must be recognised and is an essential component in person centred care. ‘’The older person and family have the right to make informed decisions about all aspects of their care and the nurse respects the level of participation desired’’ (An Bord Altranais, 2009). Nurses most realise the importance of patients participation in their care and strive to uphold it as a principle of person centred care, ‘’Lack of time and/or restrictions on patients choice and involvement, was listed as the number 1 factor to hinder quality nursing care’’ (An Bord Altranais, 2009). As nurses it is our responsibility to take the time to overcome communication barriers, for example, a hearing or speech deficit. The nurse can opt to use non-verbal communication to facilitate the decision making process for the patient. Patients are entitled to information about every aspect of their care and should be frequently updated. Information about management and prevention of conditions, procedures, assessments and investigations ,diagnosis, treatment, follow on care, referrals and services available to patients( i.e. health, social) should all be disclosed to patient (Department of Health,2001). If they
Autonomy includes three primary conditions: (1) liberty (independence from controlling influences), (2) agency (capacity for intentional action), and (3) understanding (through informed consent) (Beauchamp & Childress, 2009, p. 100). According to Beauchamp & Childress (2009) to respect autonomous agents, one must acknowledge their right to hold views, to make choices, and to take actions based on their personal values and beliefs (p. 103). Respect for autonomy implies thaturges caregivers to respect theassist a patient in achieving? Heed? the autonomous choices of their patients. From there, patients can act intentionally and with full understanding when evaluating medical treatment modalities. Autonomy also includes a set of rules, one of which requires that providers honor patient decision-making rights by providing the truth, also known as veracity (Beauchamp & Childress, 2009, p. 103). In this case, several facets of the principle of respecting autonomy, specifically veracity, informed
Advanced directives have received increasing advocacy over the past 20 years. High profile cases, the Joint Commission on Accreditation of Healthcare Organization (JCAHO) and the Patient Self-Determination Act
Studies investigating the capacity of patients with mild-to-moderate cognitive impairment to give consent or those analyzing the decision-making of surrogates of AD patients with dementia often present conflicting results. The ethical principle of autonomy clearly recognizes each person’s right to make informed decisions with respect to participation in research. However, taking into account the nature of the disease, (which affects cognitive processing in a critical way) and its progression towards dementia there are justified concerns about the capacity of these patients to give informed consent in an AD research context. Thus, there is a need to equilibrate the protection of vulnerable adults with their right to choose to participate in such research. It is debatable whether patients with mild to moderate impairment are capable of giving informed consent. For instance, while some studies assessing the consent-giving capacities of mildly cognitively impaired AD patients conclude that they do not have these capacities (Kim et al., 2001), others seem to show that the reverse is true and a proportion of patients with mild and moderate AD are perfectly capable of making informed decisions (Karlawish et al. 2002).
In the older patient that has planned for end-stage diagnosis, an advance directive provides a means to articulate patient requests. However, in the patient who has sustained
Advance directives are used to describe the types of treatments someone would want depending on how sick one is. They also are a benefit as they will most likely outline what types of treatment one may want no matter how will they are. Patients will want to include types of information that will either consent to or refuse certain treatments, services or procedures that would affect them in a way they do not want. These advance directive should include what types of diagnostic tests, surgical procedures and medications one would
This article begins by referencing an incident of a 74-year-old woman in the Netherlands whom requested euthanasia for her chronic dementia. The author (Lane) explains how euthanasia is so commonplace in the Netherlands and how they use subjective criteria such as “"unbearable suffering," "due care" and, fuzziest of all, especially in cases of dementia or mental illness, a ‘voluntary, well-considered request’”. The author goes on to explain how the current euthanasia laws are problematic and “In some cases, physicians knowingly pushed the limits of [the] law”. The author goes on to conclude that if euthanasia were to be expanded beyond what it is now, the impaired patient’s ability to consent would become doubtful or null. The legislation in
The new topic that we discussed in class was about assisted suicide and death hastening. This new source that I found talks about if someone can hasten their death as they wished if they have dementia and I found this article to be really interesting. The article starts out by saying how it can be simple to hasten your own death. All you have to do is not eat or drink for a week. The article mentions the case of Margaret Bentley. Bentley had decided years ago that she wanted to stop eating if she became disabled. Her dementia had gotten a lot worse and she needed other people to help her. Her family would allow her to die and they respected her wishes, but the administrators of her nursing home did not. She even wrote and signed a living will
Nonetheless, the number of people with dementia, has continued to expand at an exceptional rate. In considering this difficult ethical issue, it is worth remembering words stated by Brody "We seem to have forgotten the difference between people who die because they stop taking in food and water, and people who stop taking in food and water because of the natural dying process"(Brody, 2011). Healthcare professionals are essential when implementing and influencing nutritional care. It is important to note however that, as a society it is necessary to acquire the knowledge and understanding of dementia. The more we educate ourselves in how the brain process can impact the way we eat and drink, the better the practice and understanding we can
Sometimes good intentions can prove to be a barrier. For instance, fear of what healthcare professionals will do with the information that is disclosed can keep a patient from being honest about their problems, thus the wrong treatment can be given, or no treatment given at all. This can be detrimental for the patient and the community. To give accurate care it is imperative that as much information concerning the crisis that is presenting be given and a detailed history. This could impact the healthcare team as well.
Nursing is an all encompassing profession in which practitioners are not only proficient in technical medical functionality, they also have the obligation to remain compassionate and respectful of patients and as such are expected to adhere to pre established codes of ethics. Of these ethics, autonomy is of extreme importance as it offers patients a sense of personal authority during a time where they may feel as if their lives, or at the very least their health, is no longer under their control. Autonomy in the context of nursing allocates the patient and often their family with the final word on the course of treatment. The concept of patient autonomy is a highly variable subject in all fields of health care. It is a universal concept that varies widely in its meaning and interpretation. Autonomy in its simplest form can be defined as a state of independence or self governing (Atkins, 2006). Patient autonomy can also be defined as the ability to make once own decisions, based on one’s sound judgment. It is defined by the American Nurses Association (ANA, 2011) as the "agreement to respect another 's right to self determine a course of action; support of independent decision making." This seemingly straight forward ethical concept is rife with difficulties when one considers potential disagreements that may arise even when informed consent is provided, particularly among children or vulnerable people. Relevant research and
An individual experiences drastic decrease in appetite in the advance stages of dementia. Furthermore, their activity level decreases as well; therefore, they do not require large quantity of calorie intake (Byrd, 2004). However, they require good nutrition to maintain their life. It is unfortunate that in advance stages of dementia, it becomes very challenging for health care providers (HCPs) to maintain adequate intake for elderly population. As the disease progresses, swallowing impairments cause frequent aspiration pneumonia. What really matters is that HCPs take all other measures to maintain nutrition and hydration before jumping to the conclusion that the person needs ANH. Of course, the speech language pathologist gets involved throughout the procedure (Byrd, 2004). It is important to note that AHN is considered a medical intervention in the field of medicine. However, society as a whole does not believe that ANH is a medical intervention (Byrd, 2004). Therefore, some people believe that not providing ANH is comparable to neglect and inhuman regardless of the nature of disease process. On the other hand, “others see withholding AHN as a more humane or compassionate choice because the focus of care is placed on the person, not merely [food] intake or body weight” (Byrd, 2004). A study mentioned in Byrd (2004) highlights that the families of these patients prefers “noninvasive nutritional interventions
When working with hospice patients diagnosed with Dementia, the focus in medicine shifts from curative to that of providing comfort care and symptom control. The end stage Dementia patient typically presents unable to communicate meaningfully, incontinent, unable to ambulate or sit without assistance and exhibits swallowing concerns. The feeding and swallowing issues that arise with the progression of this disease can be challenging for family members, as many loved ones exhibit a need to feed. Providing the caregiver and family education related to not only the death and dying process but also the side effects related to interventions such as artificial nutrition is a vital part of the end of life process.