Dodging Mortality's Inevitable Grasp: A Chat with Medical Ethicist Alena Buyx
Humans universally tend to shy away from contemplating their finite existence
Let's Talk Death and Dying
For many, the name Alena Buyx brings to mind her time as chair of the German Ethics Council. Yet, she's a little-known figure in the world of medical ethics, an area that's surprisingly relevant to everyone. Buyx penned a book on the subject: "Life and Death" delves deep into the colorful questions surrounding mortality, raising more questions than it answers.
ntv.de Wonders: What's the hottest medical ethical question on people's minds?
Buyx: "The two main questions are: How do I want to live and how do I want to die? The first one falls more into the realm of private lifestyle, but also into the realm of medicine, illness, and health. And the second one is central to my field. 70% of people die in healthcare facilities and not necessarily peacefully in their beds as they wish. 11% of Germans even die while being artificially ventilated."
Facing Our Fears
Why do so many people shy away from advance directives and healthcare proxies when they profess a desire to control their own end?
Buyx: "We all don't really want to think about our own mortality. Studies show that clinical ethics consultation often leads to patients living longer. Anecdotally, I can say that in the cases we deal with, people are often treated longer than they would like."
Preparing for our Final Act
Knowledge of these facts can help in making better decisions.
For the individual, preparation brings more peace and clarity. And the better people know what a person wants for their last days, the easier it is to make decisions on their behalf when necessary. Some people want to fight until the very end and use every chance to wake up again. In that case, a longer period of artificial ventilation is obviously necessary. Another person might say: I don't want to be artificially ventilated anymore, I don't want to go to an intensive care unit, I have cancer. I know it's life-shortening, and I don't want to experience this phase. These are completely different attitudes. If they are discussed and known beforehand, ideally arranged in advance and documented, it makes many things easier.
A Pandemic Lesson
According to Buyx and Christian Drosten in the "ntv Salon," we've learned that tough, stressful situations, like the ongoing pandemic, can make us a bit more prepared — and that can be liberating.
Age and Circumstance
It's crucial to reflect our specific life situation in our decision-making and ask ourselves, what do I want for my end? What do I want the last days of my life to look like, and what do I find worth living?
Advice
- Prepare for preemptive care planning if you receive a diagnosis of a chronic and/or life-threatening illness. Talk to friends, family, or seek professional advice.
- If you're young and suddenly find yourself in a difficult situation, the key is open communication about the difficult questions, even when delayed.
- In the hospital, it helps not to come with a hard attitude of entitlement. Instead, collaborate with the healthcare team.
Solveig Bach spoke with Alena Buyx
Religion's Role
In an increasingly less religiously bound world, end-of-life decisions are often strongly justified religiously. But this reveals something about us: we resort to something that is no longer that important to us at this point. Religious value systems offer a kind of reservoir in these fundamental questions. As a new pluralistic world emerges, we should reflect on principles like self-determination, care, avoiding harm, and justice to develop our own views on end-of-life care.
The Future of Medical Ethics
According to Buyx, the next major medical ethical question will revolve around how to deal with new technologies in medicine. The AI regulation provides the first major guidelines. Inexorably moving into an area in medicine where we are extremely vulnerable, where it's about health, illness, and highly personal decisions, we have to use these technologies, but we must also balance their use with individual control. This may be a question keeping medical ethicists busy for the next 10 to 20 years in healthcare.
Source: ntv.de
- Medicine
- Death
- Hospital
- Organ donation
- Health
- Healthcare system
Enrichment Data:
Overview:
End-of-life decisions are among the most complex and ethically sensitive areas of medicine, raising multiple current ethical concerns. The prominent ethical issues in this field include patient autonomy, quality of life vs. prolonging life, decision-making capacity and surrogate decision-makers, medical aid in dying (MAID), and resource allocation and justice.
Core Ethical Questions in End-of-Life Care:
- Patient Autonomy and Consent: Should patients have full control over decisions to withhold or withdraw life-sustaining treatments, or does the medical team have a role in overriding those decisions if they believe it is not in the patient's best interest?
- Quality of Life vs. Prolonging Life: Is it ethical to prioritize quality of life over the extension of life through aggressive medical interventions?
- Decision-Making Capacity and Surrogate Decision-Makers: When patients are incapacitated, who should make decisions on their behalf, and what standards should be used (substituted judgment vs. best interest standard)?
- Medical Aid in Dying (MAID): What ethical safeguards are necessary if MAID is allowed? How should eligibility be determined, and how can the risk of coercion or misuse be minimized while respecting the patient's autonomy?
- Resource Allocation and Justice: How do we fairly allocate limited healthcare resources at the end of life, especially in settings of scarcity?
Approaches to End-of-Life Decision-Making:
- Early and Continuous Communication: Engage patients and families early in discussions about goals, values, and advance directives.
- Transparency and Medical Information: Provide clear and comprehensive information about prognosis, treatment options, and expected outcomes to enable informed decision-making.
- Ethical Frameworks: Use established bioethical principles—autonomy, beneficence, non-maleficence, and justice—to evaluate and make decisions.
- Ethics Consultations: Seek input from ethics committees or consultants in cases of disagreement or complex circumstances to clarify issues and support morally sound decisions.
- Legal and Institutional Safeguards: Rely on advance directives, living wills, and durable power of attorney to uphold patient autonomy when they can no longer express their wishes. In jurisdictions where MAID is legal, implement strict eligibility criteria and safeguards to prevent coercion and misuse.
Application in Various Life Situations:
- Terminal Illness: Focus on patient-centered care, symptom management, and clear communication about prognosis and options, including MAID where legally permitted and desired by the patient.
- Sudden or Unexpected Illness: Engage surrogates early, review prior directives, and use best interest or substituted judgment standards to guide decisions.
- Chronic Debilitating Conditions: Assess ongoing interventions for benefit and burden, ensuring that treatments align with patient values and quality of life goals.
- Pediatric or Incapacitated Patients: Rely on family and legal surrogates, but prioritize the child's best interests and, when possible, involve them in decision-making to the extent their capacity allows.
- As the medical community continues to explore the ethics of new technologies, such as artificial intelligence, they must carefully balance their use with individual control, ensuring that advancements in health and science align with principles of self-determination, care, avoiding harm, and justice.
- In light of the increasing importance of mental health in the broader health-and-wellness landscape, vocational training programs could be expanded to incorporate modules focused on mental health awareness, allowing individuals to better understand and respond to medical-conditions that may arise in the workplace, fostering a more supportive and empathetic community policy in various industries.
