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Palliative care is a special type of medical care for people who are seriously ill, that has the goal of alleviating and managing symptoms in a way that maximizes comfort and improves quality of life by catering to a patient's needs. Despite this being an option for patients, many are unaware of this option and fail to request it. Combined with the failure of some providers to inform their patients about palliative care, we see that overall it is not as popular. In a study conducted by the University of Pennsylvania, they were curious to see how making palliative care consults a default option for hospital patients would increase the number of people who decide to use palliative care.



The study took place between March 2016 and November 2018, and included over 34,000 patients with chronic obstructive pulmonary disease (COPD), dementia, or kidney failure at 11 hospitals across eight states. Despite being one of the populations that could greatly benefit from this type of research, past palliative care studies have not been inclusive of patients with COPD, dementia, and kidney failure.

The results of the study showed that palliative care consultation rates increased from 16.6 percent to 43.9 percent and the time to consultation decreased by 1.2 days. This means more people were hearing about their options in the realm of palliative care much sooner. While early palliative care consults would be helpful in patients considering their treatment options, it is not explored enough. According to the World Health Organization, Worldwide, only about 14% of people who need palliative care currently receive it. It was also found that 9.6% of providers ended up canceling the palliative care consult.

Of the canceled palliative care consult orders, clinicians said 53.1% had “no palliative care needs at this time.” It would be interesting to know more specifically what went into the thought process of doctors that said their patient did not need the palliative care consultation. This raises the ethical question of if doctors determined the patient doesn't need this type of care on their own, or whether they talked to the patient about it before entirely opting out of it. I think the reasoning for providers who opted out of the palliative care consult might be a mix of these two justifications, but regardless, knowing the thought process behind such decisions could help inform future policy changes regarding how doctors administer and discuss palliative care with their patients. Evidently making a palliative care consult default will increase the amount of people who can benefit from and palliative care sooner. This is a cost effective strategy that would be useful in hospitals across the country, and increase access to and knowledge about end of life care.



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In July 2022, 84-year-old retired entrepreneur James O’Brien broke his hip following a fall at his home in rural New Mexico (1). Upon being wheeled to the hospital to receive treatment, Mr. O’Brien—who was already dying of heart failure and advanced lung disease—declined to receive surgery for his injury, choosing to “die comfortably” rather than suffer from post-surgical complications. The physicians tasked with caring for Mr. O’Brien, however, attempted to go against his wishes, calling his daughter Jennifer with the expectation that she would convince Mr. O’Brien to accept a hip operation. Ultimately, Jennifer opted to support her father’s decision instead and placed him in a local hospice where he would spend the final months of his life. Although James O’Brien died in the way that he desired, thousands of other end-of-life patients are not given the same liberties; specifically, those who are rendered incapable of making their own medical decisions often become subjected to undergoing invasive treatments that cause them to die painfully rather than peacefully (2). This article analyzes the underlying causes and ethical consequences of the administration of aggressive end-of-life medical care.


Aggressive end-of-life care is defined as any form of medical treatment aimed at prolonging dying patients’ lives rather than improving their quality of life; examples include chemotherapy, invasive surgeries, feeding tubes, and mechanical ventilation (3).


When terminally ill patients who are no longer able to make medical decisions for themselves permit their physicians to choose on their behalf, these patients end up being more likely to endure aggressive or experimental treatments (2). However, previous studies have demonstrated that such invasive modes of intervention lead to increased physical and psychological distress prior to death (4). This evidence thus indicates that patients who opt to allow their physicians to choose their treatments may not be receiving the end-of-life care that they would have desired. Moreover, these individuals are likely not dying in the place that they would have wished; aggressive interventions require prolonged stays in intensive care units or emergency rooms, but 70% of patients have been shown to demonstrate a preference for dying at home rather than in the hospital (5). Evidently, a disconnect exists between the types of care dying patients want and the treatments their physicians actually end up administering.


So why are physicians opting for aggressive end-of-life interventions despite knowing that their patients would likely desire more palliative ones? For starters, medical professionals often believe that the “default” purpose of hospital care is to prolong patients’ lives. Thus, electing to not administer aggressive treatment is perceived by many physicians as a symbol of giving up on their patients. A qualitative study interviewing internal medicine doctors revealed this notion; as one physician put it, patients “came to the hospital to get well” and “were not ready to die,” making it his obligation to utilize whatever means necessary to prevent death from occurring (6). Additionally, discussing the topic of letting patients die is an unpleasant confrontation that medical professionals prefer to avoid, especially when people close to patients such as family members desire aggressive treatment to be continued. Although some individuals—such as in the case of Jennifer O’Brien—opt to permit and accept the deaths of their loved ones, many others choose to interpret grim prognostic information in an overly optimistic light, insisting that their ailing relatives will be able to recover even when told otherwise by medical professionals (7). Evidently, deciding to allow death to happen brings the possibility of legal backlash against physicians and the hospitals they work for; thus, it is no surprise that aggressive treatments are so frequently maintained for end-of-life patients.


Ultimately, the controversy surrounding aggressive end-of-life interventions cannot simply be blamed on the physicians who decide to administer them. Instead, this dilemma is rooted in deeper systemic and social issues that coerce these doctors into making specific medical decisions, even if such choices serve to harm rather than help their patients. Further discussion that aims to improve the ethicality and rationality behind end-of-life care is thus necessary to ensure that patients do not continue to undergo unnecessary suffering in the final moments of their lives.


Reviewed by Kelly Ma

Graphic by Shanzeh Sheikh


References

  1. Span, P. (2023, March 14). Aggressive Medical Care Remains Common at Life’s End. The New York Times. https://www.nytimes.com/2023/03/14/health/end-of-life-care-hospice.html.

  2. Finnegan, J. (2019, June 18). Patients Get More Aggressive End-of-Life Interventions When Physicians Take Over Decision Making, Study Finds. Fierce Healthcare. https://www.fiercehealthcare.com/practices/patients-get-more-aggressive-end-life-treatment-when-physicians-take-over-decision-making.

  3. Gallo, J. J., Abshire, M., Hwang, S., & Nolan, M. T. (2019). Advance Directives, Medical Conditions, and Preferences for End-of-Life Care Among Physicians: 12-year Follow-Up of the Johns Hopkins Precursors Study. Journal of Pain and Symptom Management, 57(3), 556–565. https://doi.org/10.1016/j.jpainsymman.2018.12.328.

  4. 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.

  5. Where People Want to Die (n.d.). Healthtalk. https://healthtalk.org/experiences/living-dying/where-people-want-to-die/.

  6. Dzeng, E., Dohan, D., Curtis, J. R., Smith, T. J., Colaianni, A., & Ritchie, C. S. (2018). Homing in on the Social: System-Level Influences on Overly Aggressive Treatments at the End of Life. Journal of Pain and Symptom Management, 55(2), 282–289.e1. https://doi.org/10.1016/j.jpainsymman.2017.08.019.

  7. Zier, L. S., Sottile, P. D., Hong, S. Y., Weissfield, L. A., & White, D. B. (2012). Surrogate decision makers' interpretation of prognostic information: a mixed-methods study. Annals of Internal Medicine, 156(5), 360–366. https://doi.org/10.7326/0003-4819-156-5-201203060-00008.

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Extensive research has shown that socioeconomic status impacts health along a gradient: those with less financial resources and social capital have poorer health outcomes compared to those who stand towards the top of the gradient. While this has been researched for decades, discussion on the relationship between socioeconomic status and the quality of end-of-life care patients receive is somewhat lacking but increasingly pertinent. As life expectancy in the United States increases, so does the prevalence of chronic conditions, creating urgency in the discussion of equitable palliative care (1).


One of the most significant barriers to receiving quality palliative and end-of-life care is financial. Adults below a certain level of income are eligible for Medicaid, and adults over the age of 65 can be covered by Medicare. While government-funded insurance has certainly provided many individuals with the ability to access necessary treatment, it is certainly not a cure for health disparities in the United States. Certain Medicaid policies are decided by states: each state may decide whether to cover hospice care, and they may create guidelines for hospice care eligibility (2). If an individual covered by Medicaid lives in a state in which hospice is not covered by their insurance, and they do not have the financial resources to pay out-of-pocket, they are blocked from accessing care that would greatly improve their quality of life, providing comfort in the face of terminal illness. Furthermore, there are a great number of individuals who do not qualify for Medicaid but are still unable to afford adequate healthcare, including palliative and end-of-life care. In North Carolina alone, there are an estimated 208,000 adults in this position (3).


Action must be taken to expand access to end of life care within low-income communities. Broadening the requirements for Medicaid eligibility would alleviate the financial strain posed by palliative care for those who do not currently meet the guidelines for Medicaid coverage, but cannot afford hospice on their own (2). Additionally, establishing hospice care as an essential resource that must be covered by Medicaid in all states would improve access to end-of-life care without the threat of a policy change revoking the ability to seek palliative support (2). 


Expanding Medicaid eligibility and establishing Medicaid coverage for hospice care on a national level are necessary interventions that have the potential to greatly decrease suffering among low-income individuals at the end of their lives. Nobody deserves to die in pain solely due to the affordability and accessibility of palliative care, and policy-level changes must be enacted to prevent this suffering. 


Reviwed by Kate Lee

Graphic by Sonali Patel


References

  1. Ansah, J.P. and Chiu, C.T. (2022). Projecting the chronic disease burden among the adult population in the United States using a multi-state population model. Frontiers in Public Health, 10(1082183). 10.3389/fpubh.2022.1082183.

  2. Wachterman, M.W. and Sommers, B.D. (2021). Dying Poor in the US—Disparities in End-of-Life Care. JAMA Network, 325(5), 415-500. 10.1001/jama.2020.17773

  3. Spencer, J. C., Gertner, A.K., and Silberman, P.J. (2019). Health Status and Access to Care for the North Carolina Medicaid Gap Population. North Carolina Medical Journal, 80(5), 269-275. 10.18043/ncm.80.5.269

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DMEJ

   Duke Medical Ethics Journal   

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