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Markkula Center for Applied Ethics

Ethics at the end of Life: Non-beneficial Intervention and the Hospice Ethic

Lauren Yu ’22

Lauren Yu ’22 is a double major in biology and public health and is a 2021-22 health care ethics intern at the Markkula Center for Applied Ethics. Views are her own.

 

The U.S. Centers for Medicare and Medicaid Services (CMS) define hospice as “a comprehensive, holistic program of care and support for terminally ill patients and their families,” in which the focus of care transitions from cure to palliation. In addition to managing physical symptoms such as pain, modern hospice services also employ interdisciplinary teams that collectively address the psychosocial and spiritual needs of patients and caregivers. 

Under Medicare Part A — the most basic set of benefits available — eligible patients are entitled to two 90-day periods of hospice care and unlimited 60-day periods afterward. One 2021 evidence review suggests that home-based palliation at the end of life produces multiple benefits through improvements in patient outcomes and resource utilization. Despite these individual and societal goods, however, recent data from the National Palliative Care and Hospice Organization indicate that only half of decedent Medicare patients in 2018 were enrolled at their time of death. Of these, more than a quarter used services for 7 days or fewer, a length of time considered insufficient to provide full benefits. Additionally, hospice programs primarily served a Caucasian patient population, with all other racial groups being underrepresented relative to figures from the U.S. Census

To be sure, the prevailing consensus in biomedical ethics holds that living is good; the prevention of death remains a critical pillar of the clinical mission. Nevertheless, it is equally valuable to recognize the patient who is overmastered by their health circumstances and provide compassionate support in the process of dying, a complex transition often accompanied by both grief and meaning. The enhancement of patient autonomy, beneficence, and justice during this sensitive period demands an expansion in hospice availability and accessibility, and, more broadly, highlights an urgent need for informed conversations about non-beneficial intervention (NBI) and hospice values among palliative care specialists, health care providers, and patients. 

Futility remains a contentious topic in medical ethics; there is no generally accepted definition, and courts have tended to uphold patients’ ability to request overtreatment via non-beneficial intervention as an exercise of autonomy. Additionally, some physicians report pursuing NBI out of a desire to do everything possible, while others may be reluctant to refuse the wishes of patients and their families. Some analysts have argued that patients should be able to freely request all of the NBI that they can afford, yet this “pay-to-play” approach overlooks the considerable harms to others that may result, including healthcare professionals’ moral distress, the unjust allocation of healthcare resources, and care that ultimately exacerbates suffering or fails to align with patient values and priorities. 

One large 2011 study found that approximately 18% of Medicare patients underwent inpatient surgery in their last month of life. These aggressive interventions were correlated with an increased likelihood of hospital admission and longer ICU stays, leading the authors to question whether the patients’ goals for treatment were truly taken into account. In situations where clinicians and terminally ill patients are able to reach a shared understanding that it is impossible for continued care to achieve agreed-upon goals, hospice can avoid these undesirable outcomes and provide the most morally satisfying course of action. 

Accessing the full benefits of hospice care will require us to address misconceptions held by both patients and providers. While hospice permits the progression of a terminally ill patient’s disease course, it is nonmaleficent in that it does not hasten death, but merely withdraws an ineffective therapy that fails to produce significant benefit. Furthermore, while hospice patients sometimes receive opiates to comfort pain and breathing problems, they are not euthanized; thus, hospice ought not to be equated to the more controversial issue of medical aid in dying. 

When applied appropriately, patients’ lives are not shortened, and many find greater satisfaction in their final days, are more capable of exercising their autonomy, and may be more likely to die in their place of choosing (usually at home). If we are to encourage increasing utilization, we must ensure concomitant Medicare funding and investment in hospice services themselves, including the strict enforcement of penalties on resource-sapping fraud. 

Achieving a more equitable system for care at the end of life will also require building trust: the U.S.’s diverse aging population and history of bias and discrimination in medical practice will require linguistically and culturally sensitive messaging that candidly addresses deeply held concerns. Finally, clinicians across the continuum of care should be trained to educate patients on end-of-life options. 

Promoting the hospice ethic will impose costs on our collective time and resources. But we must ask ourselves, what is at stake? Ultimately, it is the patient’s opportunity to self-efficaciously define what a “good death” means for them and their loved ones, as well as their ability to put a plan into action that approaches these ends. In spite of the many schisms in our society, most Americans agree that empowering patients to make this decision is worth their while. 

 

Jun 6, 2022

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