“Health care professionals have an ethical obligation to protect life and to relieve suffering”. Like other health professionals, registered dietitian nutritionists (RDNs) follow a code of ethics. The principles and standards of the Code of Ethics for the Nutrition and Dietetics Profession encompasses non-maleficence, autonomy, beneficence, and justice. “Dietitians are expected to exercise professional judgement and practice dietetics based on specific principles and current practice”.
Ethical issues are usually complex, especially when it encompasses tube feeding and patients with dementia. Food and drink are basic human needs, and competent individuals have the right to refuse artificial nutrition and hydration. Nutrition and hydration have psychological and physiological functions which are essential in total care. Advanced dementia is incurable and patients are unable to eat in the last stages, resulting in the need of tube feeding. Individuals with advanced dementia lose their decision-making capacity. I believe advanced dementia patients and tube feeding can be a dilemma or ethical issue due to the patient’s inability to decide on end-of-life (EOL) care. Is it ethically acceptable for caregivers to deny food and drink from a patient that is unable to make their own decision? Will tube feeding be beneficial for the patient or should it be avoided?
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Quality of life is a major ethical principle for end-stage dementia patients and tube feeding. There is controversy over tube feeding improving nutritional status or prolonging survival. Families or caregivers may think they are doing a favor by prolonging their family member’s life, or they might be selfish in their thinking and simply do not want to let their family member to die.
Another ethical principle is invasiveness. Some individuals may view placing a percutaneous endoscopy gastrostomy (PEG) or requiring tube feeding as an “invasive procedure as an expression of hope versus giving up on life”. A PEG is necessary for survival in end-stage dementia patients.
Finally, comfort could be a principle in EOL care. According to de Beaufort and Vathorst (2016), it is morally acceptable for patients who suffer from dementia to live a good and comfortable life. Family members and caregivers may consider comfort more important over life.
I believe the patient, in their cognitive state, has the greatest interest in the outcome. I also believe caregivers or family members have interest in the outcome of the advanced dementia patient. Family members or caregivers may be motivated to provide care for various reasons: love, spiritual fulfillment, obligation, pressure of society, and even greed.
Individuals value life, and religion often contributes to EOL decisions. According to Gil et al. (2018), religion is present in EOL discussion regardless of the individual’s religious practice level. Gil et al. (2018) also reported the decision-making process regarding advanced dementia patients and tube feeding are shaped by several matters including religion and socio-economic status. According to Jennings et al. (2017), health care providers can negatively contribute or cause frustrations with dementia patient’s care by not knowing the individual’s culture.
According to Meier and Ong (2015), there is a dilemma on which self should be honored. Is it the “then” self or the “now” self? Some individuals might argue which self of their family member should be honored, if there was never a discussion on medical intervention on EOL care.
Euthanasia is another opposing opinion of individuals. Choosing death over live is controversial.
We all, however, have to consider the question: do people who do not want to experience the further decline have to hope for a life threatening infection or will other options be made available, and how can we then best protect people in such a way that the choice to die is theirs and theirs only?.
Health policies and politics play an important role for dementia patients. “The nature and scope of nutrition and its health-related industries dictate the need for various regulations and accordingly the interaction with governing bodies” (Rucker & Rucker, 2016, p. 1184). According to Dementia.org (2014), the Patient Protection and Affordable Care Act (PPACA) benefits dementia patients; however, Powell (2018) reported the United States national policy for addressing dementia needs updating because there is no sustainable plan to deliver and pay for Medicaid and Medicare.
Dementia is recognized as a public health priority by the World Health Organization. The World Health Assembly acknowledged the Global action plan on public health response to dementia 2017-2025 to improve the lives of people with dementia and their families, and caregivers. The plan delivers a blueprint for action. Also, the Global Dementia Observatory is an international surveillance platform to assist in monitoring and distributing information on dementia policies, delivery of services, epidemiology, and research.
I see the issue becoming more common. Meier and Ong (2015) reported the numbers of patients with dementia are increasing. The World Health Organization (2019) reports approximately 50 million people worldwide have dementia, the seventh leading cause of death. People are living longer and the population as a whole is increasing. Also, health care is more effective than ever in prolonging individuals lives.
According to Maillet et al. (2013), the first step to implement is to practice “…sound technical judgement on feeding strategy…” to reach desired goals (p. 831). The second step is to know what the individual actually wants. Both of the steps can be accomplished by effective communication. Givens, Lopez, Mazor, and Mitchell (2012) recommended communicating with family and caregivers and providing education on the process of dementia and treatment options. Another way to accomplish the desired goal is to understand patient’s culture and religion, which promote effective communication.
Ethical issues are challenging, and many important factors are considered by family members, caregivers, and health care professionals. Effective communication is key for all parties involved. “RDs should provide education about nutrition and hydration issues to individuals, families, and health care providers; serve as an advocate for client and family; and participate in the legal and ethical discussions and decisions regarding feeding”. Knowing and understanding all of the patient’s EOL wishes is crucial in ethical decision-making.
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