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DMEJ

Duke Medical Ethics Journal

Who Decides Care? Consent and Ethics of End-of-Life Care in Elderly Populations

By Ahilan Eraniyan
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A Growing Problem

 

The world is getting older. As medical technology continues its rapid advancement, lifespans increase, and more and more people globally can enjoy long, comfortable lives. However, this increase in aging also coincides with a decrease in birth rates that leads to population growth falling under replacement levels, especially in developed countries in Asia and Europe. 

One infamous example is Japan, where 29% of the 125 million people in the country are aged 65 and up—a massive demographic problem that also poses dangerous implications for elderly health [1]. Part of what makes this trend so concerning is that elderly people are incredibly vulnerable medically. Even without any debilitating diseases, they face natural cognitive and physical decline that creates challenges in day-to-day living for them. As an example, falls and their complications are the leading cause of injury in elderly adults [2]. Falls are uniquely dangerous to older adults; other demographic groups don’t have to deal with them to the same extent. These difficulties are compounded by devastating, poorly understood diseases across a variety of categories, from neurodegenerative to heart disease. Smoking, poor diet, and other risky behaviors during youth and middle age accumulate, which leads to a high global disease burden among elderly populations [3]. 

 

The care people receive during the final stages of life is appropriately known as end-of-life care. Elderly people are the primary patients this type of care deals with. These patients are unable to recover for various reasons, whether that be the severity of the disease or refusing to undergo a life-saving procedure due to personal beliefs [4]. This care aims to comfort patients and enable critical decision-making between the healthcare team, the patients, and their families. End-of-life care procedures strive to enable physical comfort free of pain and emotional distress while supporting spiritual needs [4].

 

End-of-life care is a critical field, and as it becomes more and more commonplace due to said challenges, informed consent and ethical decision-making are necessary. Many of these patients often are not in a state to be able to make these important decisions [4]. Whether the healthcare team or the patient’s family and representatives should make critical decisions can seem unclear in these tense cases. The patient’s relatives might desperately want to keep them alive, even if there is little hope of recovery. One of the ethical pillars of medicine, beneficence, declares that a healthcare provider should work toward the “good” of the patient [5]. But in such tense cases drowning in sorrow, what is that “good”? Who gets the final say on what’s best for the patient?

"Perhaps, rather than fearing this end, we should strive to live as much as we can in acknowledgment of its inevitability."

Consent in a Modern Age

 

Traditionally, informed consent refers to patients making a medical decision based on their full understanding of treatment and their medical situation [6]. While a healthcare provider can inform the conscious patient of their disease and treatment options, they can’t decide on the patient’s behalf; instead, they serve more as an advisor. The burden of decision falls on the patient as part of a critical medical principle called patient autonomy, which acknowledges the patient’s ability to decide their care. By providing informed consent, a patient can receive care as part of that autonomy [6].

 

But what happens when a patient does not have that decision-making capacity? There are several alternative consent pathways that patients can work to set up to ensure their wishes are followed. One such pathway is the advanced directive, also known as a living will. These legally binding documents allow patients to clarify their wishes for future healthcare if they are no longer of decision-making capacity [7]. These documents are binding and allow significant clarity on care decisions. 

 

Another pathway is the healthcare power of attorney (POA). Generally, the POA grants an alternate person the sole decision-making power if one cannot make or communicate their healthcare choices [7]. If one does not want to receive CPR or similar life-saving measures, they may sign a do-not-resuscitate order (DNR). DNRs are legally binding documents that prevent such care from being provided after consultation with the patient and their family [7].

 

Decisions within an end-of-life context may lack any of these directives, however. In these cases, family members or friends may often be involved in the decision-making process, but the final care decisions can only be made by a designated surrogate decision-maker. Depending on state laws, the order in which decision-making varies, but generally speaking, the spouse, adult children, and parents (in that order) have the highest priority [8]. In elderly patients, the adult children are usually the ones whose responsibility falls, given that the spouse will likely be of similar age and the parents are even older. 

 

  If the healthcare team and patients’ loved ones agree on a path forward, then the decision is easily made. However, often that is not the case. End-of-life care can be deeply emotional for all sides involved in the decision-making process. Adult children may struggle to let go, and the healthcare team may be dealing with their issues in these situations. Disagreements often crop up amongst different family members or between the healthcare team and family, which leads to further strife and pain in a deeply emotional process. The healthcare team must acknowledge that pain while respecting the patient's and family's judgment and decision-making in the process. 

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Image from Pixabay

Right and Wrong

 

When patients cannot provide informed consent or if there is no alternative instruction or consent for care, the healthcare team should strive to work alongside patients to provide appropriate end-of-life care. The healthcare team must first fully understand the life and medical state of the patient as well as the care options available to them. A comprehensive understanding of a patient’s situation is generally optimal, but in cases of end-of-life care, it is downright mandatory to make appropriate decisions on the patient’s care [9]. The healthcare team must also be fully prepared to work with their emotions. The burden of death is heavy, and by continually negotiating with their doubts, they can go into the end-of-life care process with a clearer, more capable mind. This is critical because end-of-life care is a highly emotionally charged process for all parties involved. The healthcare team needs to consider the desires of the patient and the surrogate to provide appropriate quality of care in the context of the patient’s state. Can their life be extended at the cost of their consciousness or independence? Is the family prepared to provide care or commit the patient to a facility if necessary? The healthcare team must be prepared to tackle these difficult questions alongside their partners in the process with empathy and professionalism to make the best possible decision for the patient.

 

With these preparations, the healthcare team must first respect the surrogate's decision-making. Legally, their decisions are as valid as those of the patients in advanced directives or while conscious. If significant disagreement arises, the healthcare team should be willing to sit down with the patient’s family and provide them with the necessary information and advice to ensure they understand their decision [10]. 

 

Throughout various cultures and times, the focus has been on the glory of life and living. Medical care has constantly been seen as a means to this end, with medical technologies being used to prolong life. However, in this aging world, we must increasingly confront our incessant fear of death. Death is often portrayed as an unstoppable, malevolent force in culture and media for good reason. It symbolizes the end of a person’s existence in this world, of their happiness and sadness. Perhaps, rather than fearing this end, we should strive to live as much as we can in acknowledgment of its inevitability. End-of-life care has increasingly been shifting toward providing a “good death:” an end a patient is happy with [9]. Among elderly populations, the healthcare team and family should strive to make such a death possible, working with what the patient can provide to enable a death they feel at peace with. By understanding the ethics and consent procedures involved in this process, the healthcare team may be able to provide a “good death” that allows for a healthy grieving process, one where that person’s life endures in the hearts of their loved ones. 

Review Editor: Sanjana Anand
Design Editor: AJ Kochuba
References
  1. Edmond, C., & North, M. (2023, September). More than 1 in 10 people in Japan are aged 80 or over. Here’s how its ageing population is reshaping the country. World Economic Forum. https://www.weforum.org/agenda/2023/09/elderly-oldest-population-world-japan/ 

  2. Centers for Disease Control and Prevention. (2023, September 6). Older adult falls data. Centers for Disease Control and Prevention. https://www.cdc.gov/falls/data/index.html 

  3. Prince, M. J., Wu, F., Guo, Y., Gutierrez Robledo, L. M., O'Donnell, M., Sullivan, R., & Yusuf, S. (2015). The burden of disease in older people and implications for health policy and practice. Lancet (London, England), 385(9967), 549–562. https://doi.org/10.1016/S0140-6736(14)61347-7

  4. National Institutes of Health. (n.d.). Providing care and comfort at the end of life. National Institute of Aging. https://www.nia.nih.gov/health/end-life/providing-care-and-comfort-end-life 

  5. Kinsinger F. S. (2009). Beneficence and the professional's moral imperative. Journal of chiropractic humanities, 16(1), 44–46. https://doi.org/10.1016/j.echu.2010.02.006

  6. Hall, D. E., Prochazka, A. V., & Fink, A. S. (2012). Informed consent for clinical treatment. CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne, 184(5), 533–540. https://doi.org/10.1503/cmaj.112120

  7. National Institutes of Health. (n.d.-a). Advance Care Planning: Advance Directives for Health Care. National Institute of Aging. https://www.nia.nih.gov/health/advance-care-planning/advance-care-planning-advance-directives-health-care 

  8. Pope, T. M. (2024, March 18). Default surrogate decision making - fundamentals. Merck Manuals Consumer Version. https://www.merckmanuals.com/home/fundamentals/legal-and-ethical-issues/default-surrogate-decision-making 

  9. University of Washington. (n.d.). End-of-life issues. UW Department of Bioethics & Humanities. https://depts.washington.edu/bhdept/ethics-medicine/bioethics-topics/detail/63 

  10. Lang, F., & Quill, T. (2004). Making decisions with families at the end of life. American family physician, 70(4), 719–723.

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