End-of-Life care is a complex and controversial topic in todays healthcare environment. Many factors contribute to the difficult decisions that must be made at the end of life, including autonomy vs. paternalism, issues of advance directives, rationing of health care, cost of treatment and subsequent financial burden, physician-assisted suicide, etc. Progress has been made in caring for those who are nearing the end of their lives, but medical advancement has added further complexity to this issue. The ‘Graying of America’, a result of the baby boom of 1946-1964, contributes to the importance of well-established end-of-life care plans within the medical community. According to Sade (2012), over the next two decades, the rate of increase in the elderly population will be over 3% per year and by 2030, 20% of the US population will be over 65 years of age. Physicians and nurses alike have the responsibility to respond to the changing healthcare arena and to ensure a dignified and peaceful death for everyone. I will discuss current and common ethical issues that contribute to the complexity of end-of-life care and possible solutions.
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Age-based health care rationing is the idea that limits should be set to prevent life-extending medical care in individuals beyond a certain age for the purpose of maintaining a financially sustainable healthcare system. Daniel Callahan, a proponent of rationing health care for the elderly, at the 16th Annual Thomas A. Pitts Memorial Lectureship in Medical Ethics, argues that the rising cost of healthcare is unsustainable and explicit rationing should be instituted. He believes public funds such as Medicare should be used to facilitate palliative treatment rather than curative care. His proposal supports using quality adjusted life year calculations to set limits on what care may be offered. For example, if you are beyond a certain point in the quality adjusted life year calculation, you would only be eligible for reimbursement for palliative care and not treatment used to extend life. David Gruenewald, who was also in attendance at the medical ethics lectureship, refutes Callahan’s proposal and argues that physicians do not seek enough information in patient care and need to be more involved in shared decision making with the patient. He believes that if measures are adopted to improve communication and shared decision making, many patients would choose comfort care over curative care, thus reducing the cost of health care. The American Medical Association highlights a specific case of an active and healthy 91-year-old patient, Mr. Turner, who is being considered for an elective knee replacement. During the patient’s consultation about the surgery, the insurance company HMO committee has proposed an absolute cutoff age of 90 for this type of procedure. I believe the proposed cutoff based on age specifically is not appropriate for this situation. “It makes less medical sense to focus on age as such than to inquire which factors actually influence longevity of total knee arthroplasty. Preoperative physical function appears to be significantly associated with postoperative outcome” (Morreim, 2014). I believe rationing of healthcare services is a topic that is vulnerable to many legal accusations. The Age Discrimination Act of 1975 states that “no person in the United States shall, on the basis of age, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under, any program or activity receiving Federal financial assistance”. For as long as services are covered, for any portion of, by Medicare and Medicaid Services, I don’t think it is possible to ration care based on age, without repeal of the Age Discrimination Act. I believe this rationing would be unlawful and unethical.
Another ethical issue that arises regarding end-of-life care is physician-assisted suicide. As of July 2018, active voluntary euthanasia is legal in seven states—California, Colorado, Hawaii, Montana, Oregon, Vermont, and Washington, which comprises 18% of the US population (Lo, 2020). According to the US Supreme Court, there is neither a constitutional right to physician-assisted suicide nor a barrier making it illegal. For this reason, it is regulated by the state. Currently, active euthanasia, or the act of a physician administering a lethal dose of a medication, is illegal in all states. An important aspect to consider when discussing physician-assisted death is whether patient autonomy is respected, and self-determination upheld.
The Federal Patient Self-Determination Act (PSDA) effective since 1991 has facilitated communication between the healthcare providers and patients or consumers. The person’s right to autonomously voice their end-of-life treatment choices has to be respected ethically considering the use of advance treatment and their prognosis (Karnik & Kanekar, 2016).
The PSDA provides a straightforward view of the patient’s right to voice their choices, but ethical issues begin when there are limitations to the right of autonomy. Medical professionals are taught four basic principles of ethics, autonomy, justice, beneficence, and non-maleficence. It can be argued that denying a patient access to legal physician-assisted death is not neglecting autonomy. However, in my opinion, the stronger argument, autonomy is defined by the patient being able to make a fully informed decision and to understand all the risks and benefits and to receive care which is consistent with their preferences. Autonomy allows a patient to control their treatment based on preferences, but denying them the right to this care is inconsistent with respecting patient preference in end-of-life care. Justice is upheld by providers remaining within the scope of applicable laws and legislation when making choices. Beneficence requires that the procedure has the intent of doing good for the patient, this is difficult to discuss as the end outcome is death. However, providing this life-ending treatment could end suffering. Non-maleficence requires that a procedure does not harm the patient involved, this principle adds a unique complexity to the consideration. These four ethical principles applied to medicine have specific requirements and they are hard to meet in every circumstance. I believe certain requirements should be upheld under every circumstance, such as the patient understanding the risks and benefits under informed consent. I am not in favor of physician-assisted suicide being decided by a caregiver, even if they are the healthcare power of attorney (HC-POA). I do however believe that a power of attorney should have the ability to end treatment and allow the patient to die through passive euthanasia. Patients with terminal illness who are competent should have control over their end-of-life care. Much of the debate on physician-assisted suicide is defined within the physician community like the American Medical Association. I think nurses can play an important role in advocating for physician-assisted death as they are primarily the ones managing the symptoms and spend the most time with suffering patients. Nurses becoming more involved in end-of-life care could help identify barriers to treatment or decision-making processes.
Next, I would like to discuss medical futility and its implications during end-of-life care. Before I discuss futility in depth I will provide a brief history of how this problem arose and its linkage to autonomy. It was in the 1960’s that a new revolution of life-sustaining treatment began. Medical futility was forever changed when innovations such as cardiopulmonary resuscitation (CPR) was invented. During these years, patients with chronic renal failure received advancements in medicine that allowed them to live longer, positive pressure mechanical ventilation as well as extracorporeal life support resulted in creation of Intensive Care Units (ICUs). Soon after, most US hospitals had ICUs and were able to sustain patients in critical condition. Suddenly, a midpoint of life and death was the unfortunate case for many patients as new technology could sustain life for indefinite periods but may not lead to improvement or cure (Youngner, 2016).
The development of new life-sustaining technology for critically ill patients led to the rise of patient autonomy. As the field of bioethics emerged in the 1960s, a new framework that was patient-centered defined medical ethics in terms of individual rights and patient autonomy. Informed consent was an important manifestation that became from this. Many “right to die” cases occurred during the next two decades that resulted from conflicting viewpoints between families and health-care providers. The right for patients to refuse life-sustaining treatment was now firmly established. Patients who are unable to are now able to have surrogates make the decision for them based upon their own values and the situation at hand. (Youngner, 2016).
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Today, hospital ethics committees are consulted frequently because of futility disputes. There are different reasons for futility disputes to occur, but I will give a common example. A surrogate requests aggressive treatment intervention for a dying patient, but the provider does not believe the treatment is medically or ethically appropriate. This type of situation occurs for many reasons, the surrogate may not trust the providers judgement, they may not understand the medical situation due to issues with healthcare literacy, emotions may interfere, or even religious preferences. One way to resolve ethical dilemma in a case of medical futility is to identify the cause of the dispute. With a clear understanding of the surrogates’ reasoning for resisting the providers recommendation, a new plan or intervention may be within reach. Ethics committees are an important part of the hospital system for this reason. The committee, which may consist of physicians, nurses, social workers, chaplains, community members, etc. can gather with the family to identify obstacles and motivations for each side of the dispute.
“During EOL care, ethical dilemmas may arise from situations such as communication breakdowns, patient autonomy being compromised, ineffective symptom management, non-beneficial care, and shared decision making” (Pirschel, 2019). Nurses can navigate ethical dilemmas by establishing a trusting relationship with the patient and family members involved. End-of-life care demands that trust be established, and clear lines of communication are kept. Family members and caregivers should be given the opportunity to express their concerns and remain involved in the care of a loved one. Following these principles will provide the patient and family with dignity and further contribute to the trust that is needed for shared decision making.
In summary I believe end-of-life care is a very complex topic that requires many resources. From the first realization that a loved one may be transitioning to the end of their life to physician-assisted death, patients need advocates. Whether they be a family member acting as a surrogate, a physician explaining a prognosis, or a nurse on an ethics committee, shared decision-making, and interdisciplinary communication are vastly important in providing dignity and respect for the patients’ preferences. These preferences are to be respected by the basic ethical principles previously discussed and the Patient Self Determination Act. Albeit end-of-life care is not a time for a one-size fits all approach, each patient situation will require a sequence of evaluation that is in line with the same goal, respecting autonomy and a dignified, peaceful death.
- Karnik, S., & Kanekar, A. (2016). Ethical Issues Surrounding End-of-Life Care: A Narrative Review. Healthcare (Basel, Switzerland), 4(2), 24. doi:10.3390/healthcare4020024
- Lo, B. (2020). Resolving ethical dilemmas: a guide for clinicians. Philadelphia, PA: Wolters Kluwer Health.
- Morreim, H. (2014, May 1). Should Age Be a Basis for Rationing Health Care? Commentary 1. Retrieved from https://journalofethics.ama-assn.org/article/should-age-be-basis-rationing-health-care-commentary-1/2014-05.
- Pirschel, C., & Ons. (2019, November 19). Ethical Dilemmas at the End of Life. Retrieved November 30, 2019, from https://voice.ons.org/news-and-views/ethical-dilemmas-at-the-end-of-life.
- Sade R. M. (2012). The graying of America: challenges and controversies. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 40(1), 6–9. doi:10.1111/j.1748-720X.2012.00639.x
- Youngner, S. J. (2016). The Oxford handbook of ethics at the end of life. New York: Oxford University Press.
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