DMEJ
Duke Medical Ethics Journal
Navigating End of Life Treatment Options
By Devin Mulcrone
One of the most difficult elements of being human is recognizing our mortality. Even thinking about what death is like or what it encompasses feels foreign and unimaginable. Death is a definite part of life, and while physicians may not be the ones facing death, they are the ones working against it. Death is inherently decisive, so it makes sense that many physicians want to do all they can to preserve a patient’s life. However, is this the correct mentality that should be adopted by physicians caring for patients at the end of their lives? If a patient can be given aggressive treatment to extend the length of their life by a week, is the physical and emotional toll of that treatment justifiable? These questions are extremely difficult, and every end of life patient experience is different, complicating the issue even more. In this piece, I intend to first provide a comprehensive account of end of life treatment options. Then, I will conclude by providing my personal opinions on the best course of action in end of life treatment.
The primary form of end of life treatment is palliative care. Palliative care treats a patient’s symptoms and serious medical illness (National Institute on Aging). The goal of palliative care is not necessarily to cure a patient’s illness. A patient can stay in palliative care until the treatment is deemed no longer effective; at this point in the patient’s treatment stage, debate begins to arise as to the next course of action for patients. Physicians can then recommend two options: aggressive treatment or hospice care (Span, 2023).
Aggressive treatment encompasses risky operations that, in theory, should extend the life of a patient. This form of treatment usually extends the prognosis of a patient, however patients report less comfort and a greater degree of symptoms than the other option, hospice care (Mohammed, A. A., et al., 2019). Hospice care “focuses on the care, comfort, and quality of life of a person with a serious illness who is approaching the end of life” (National Institute on Aging). The serious illness the patient has is determined to be incurable, and hospice treatments focus on providing patients a calm end to their lives. Hospice also works for the families of patients, allowing families to spend meaningful time in a dedicated facility rather than a hospital room (National Institute on Aging).
“If more end of life patients and families can be educated on the risks and costs of aggressive treatment, the stigma surrounding hospice care can be removed so that a more informed choice can be made by patients and their families…”
On the other hand, new studies surrounding aggressive treatment have found evidence that contrasts its pervasive usage in medicine today. Despite little benefit from aggressive treatment, a recent study by Sara Douglas found that “58 percent of community dwellers and 64 percent of nursing home residents received aggressive treatment in their final 30 days” (Span, 2023). Furthermore, aggressive care resulted in patients dying sooner with more pain. The impacts of aggressive care at the end of life extend to cost and quality of life. The mean cost per patient of those who receive aggressive care at the end of life is 43% more expensive than those who enter hospice care (Cheung, M. C., et al., 2015). These higher costs were additionally found to not correlate to prolonged life.
Quality of life not only encompasses symptom management, but also preferred place of dying. Many find it uncomfortable to be in a hospital alone, and a peaceful death around family has been found to be preferred by end of life patients (Mohammed, A. A., et al., 2019). A different study conducted by Mohammed et.al found startling results about end of life patients who died of cancer. “About 90% of patients with advanced terminal cancer who did not receive aggressive management at the EOL died in their preferred place. Meanwhile, those were valid of only one-third of patients receiving ≥2 lines of treatment” (Mohammed, A. A., et al., 2019). Furthermore, 89.2% of patients who received this aggressive treatment lived less than two weeks (Mohammed, A. A., et al., 2019).
The costs of end of life aggressive treatment greatly outweigh the limited benefit of aggressive treatment. Many patients do not respond well to aggressive treatment at the end of their lives because its uncomfortable effects negatively impact bodily health (Span, 2023). Regardless of this fact and the clear benefits of hospice care, patients and their families continue to opt into aggressive treatment for end of life patients. This can be attributed to the difficulty of patients and their families to recognize their condition. Patients do not want to give up on life, so they choose the option they think will prolong their life. However, aggressive treatment has been labeled by societal influence and many physicians to be the better course of action for patients despite limited supporting evidence (Span, 2023).
However, it is also important to analyze how patients and their families perceive end of life care when making medical decisions. Patient care is supported by science and statistics, but the choice by patients and their families in difficult scenarios ultimately comes down to perception of hospice care. This perception can be influenced by culture, gender, race, and many other features. Hospice care is seen by many patients to be a sign of giving up (Span, 2023). After all, a patient entering hospice care is essentially labeled as someone who will die in the near future. This label is extremely harmful, as it induces irrational decision-making that gives little thought to how a patient wants their passing to proceed. Hospice care should not be seen as giving up on one’s life; rather, it should be regarded as a thoughtful, comprehensive decision that prioritizes relationships and quality of life rather than a perceived prolonging of death.
This stigma must be broken regarding hospice care, as the wrongful impressions about this form of treatment result in unjustified decision-making by physicians, patients, and patient’s families. The choice to enter hospice care should not be one that is bleak, but it should be a choice that is regarded with comfort (Hospice & Palliative Care of Chenango County). Hospice care is commonly perceived as a patient living a dull, lonesome, prolonged time before they pass. However, hospice care encompasses many options and comes in the forms of home care, continuous care, inpatient care, and respite care (Hospice & Palliative Care of Chenango County). Hospice home care aims at increasing the comfort and quality of life of a patient as they live from home, which is the most common preferred place of death for end of life patients. Continuous hospice care requires more intensive management and is also involved at the home, however a hospice professional spends a greater amount of time working with the patient. Inpatient hospice care results in patients living at a hospice facility, where they can be monitored and treated to a greater degree than a home. However, this form of treatment does not involve a patient’s preferred place of death. Finally, respite care involves short-term stays by a hospice professional who can fully care for a patient for a period of time, allowing the family of a patient to receive a much-needed break (Hospice & Palliative Care of Chenango County).
In regards to the best form of end of life treatment, I am most convinced by palliative care, followed by hospice care. The stigma surrounding this route leads to many patients and their families choosing aggressive treatment (Hospice & Palliative Care of Chenango County). However, this alternative path is associated with poorer health outcomes, higher costs, and a lower quality of life (Span, 2023). In addition, aggressive treatment has been found to induce stress in patients and their families (Mohammed, A. A., et al., 2019).
Death is a definite part of life; and while attempting to prolong life may appear to be the best option, it is contradictory to how I and many others would prefer to pass. Hospice care must not be perceived as giving up, as this notion leads to many wrongly presumes that the end of one’s life must be something to avoid. If one is entering palliative care and approaching the end of their life, it must be recognized by patients and their families that the pain associated with treatment is not worth the emotional and physical tolls treatment takes on patients at the end of their lives. A comforting death surrounded by loved ones is how the majority of end of life patients describe their ideal passing. This request should be honored and remembered by patients and their families. If more end of life patients and families can be educated on the risks and costs of aggressive treatment, the stigma surrounding hospice care can be removed so that a more informed choice can be made by patients and their families when end of life decisions must be made.
Review Editor: Mariana Bouchan
Design Editor: Sonali Patel
References
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Cheung, M. C., Earle, C. C., Rangrej, J., Ho, T. H., Liu, N., Barbera, L., Saskin, R., Porter, J., Seung, S. J., & Mittmann, N. (2015). Impact of aggressive management and palliative care on cancer costs in the final month of life. Cancer, 121(18), 3307–3315. https://doi.org/10.1002/cncr.29485
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Hospice & Palliative Care of Chenango County. (n.d.). Breaking the stigma around hospice and palliative care. https://hospicechenango.org/breaking-the-stigma-around-hospice-and-palliative-care/#:~:text=It's%20become%20common%20to%20label,rather%20than%20one%20of%20comfort
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Mohammed, A. A., Al-Zahrani, O., Salem, R. A., & Elsayed, F. M. (2019). Aggressive Care at the End of Life; Where Are We?. Indian journal of palliative care, 25(4), 539–543. https://doi.org/10.4103/IJPC.IJPC_59_19
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National Institute on Aging. (n.d.). What are palliative care and hospice care? National Institute on Aging. Retrieved March 18, 2024, from https://www.nia.nih.gov/health/hospice-and-palliative-care/what-are-palliative-care-and-hospice-care
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Span P. (2023, March 14). End-of-Life Care: What is Hospice Care? The New York Times. https://www.nytimes.com/2023/03/14/health/end-of-life-care-hospice.html