Imagine someone who has lost the ability to make decisions due to a traumatic car accident. What would happen if they did not have an advance directive? Who decides whether to continue life support, pursue surgery, or withdraw treatment? How do they make these difficult and life-altering decisions? What ethical principles and values could guide them?
These are some of the questions that arise in surrogate decision-making, the process of making decisions on behalf of a patient who is unable to do so for themselves. Surrogates are called to use the patient’s values and preferences to navigate these challenging circumstances. These situations involve daunting ethical dilemmas. In this essay, I will explain what surrogate decision-making is and how ethics is critical in navigating these distressing situations. I will propose that human dignity is the root of ethics and that we have a duty to respond to the dignity of the person with charity.
What is Surrogate Decision Making?
Surrogate decision-making is the process of making decisions on behalf of a patient who is unable to do so. It is not an easy task to interpret the values and preferences of a patient who has not explicitly expressed them. This leads to morally distressing situations involving value-based ethical dilemmas.
There are different types of surrogate decision-making, depending on whether the patient has appointed a health care proxy or not, and whether the patient’s preferences are known by way of another advanced directive. A health care proxy is a person who has been authorized by the patient to make health care decisions for them when they are incapacitated. If the patient has a health care proxy, then the surrogate decision maker is the proxy. If the patient does not have a health care proxy, then the surrogate decision maker is typically a family member or a close friend, according to state laws that specify the order of priority. But this gets tricky when there is not an obvious choice for an appropriate surrogate decision-maker. What if the two surviving adult children disagree about what is best for their parent?
Standards of Surrogate Decision Making
There are also different standards for surrogate decision-making, depending on whether the patient’s preferences are known or not. If the patient’s preferences are known, then the surrogate decision maker should use the standard of substituted judgment, which means making decisions based on what the patient would want if they were able to decide. If the patient’s preferences are not known, then the surrogate decision maker could use the standard of best interests, which means making decisions based on what would promote the patient’s overall welfare.
Ethical Situations in Surrogate Decision-Making
Surrogate decision-making can involve ethical situations that arise when the wishes of the surrogate decision-maker do not appear to represent those of the patient, or when there is a conflict or disagreement among different stakeholders in the decision-making process. Some of the common ethical situations that occur in surrogate decision-making and could be supported by a clinical ethicist are:
Determining the patient’s preferences and values when they are not clearly expressed or documented
Sometimes, the patient may not have an advance directive, or their advanced directive or past expressed values are inconsistent or vague. In such cases, the surrogate decision-maker may face uncertainty or difficulty in applying the standard of substituted judgment. They may have to rely on their own interpretation of the patient’s values and beliefs, or on other sources of information such as family members, friends, health care providers, etc. The difficulty is found when these sources are not seen as accurate or reliable. The sources may even be subject to the surrogates’ own interpretation which may be influenced by their interests over the patient’s.
Balancing the patient’s autonomy and best interests when they conflict
Other times the patient’s preferences may not align with what the surrogate decision maker or the health care provider thinks is in the best interest of the patient. For example, the patient may have refused a life-saving treatment that had a high chance of success, or request a treatment that had a lower chance of success or a high risk of harm. In such cases, the surrogate decision-maker may face a dilemma between respecting the patient’s free choice and acting in their best interest. The surrogate should consider whether the substituted values they are using are informed and rational; whether they reflect their patient’s values and goals, whether they are consistent with the patient’s cultural or religious beliefs, and whether they are inappropriately or appropriately influenced by external factors, etc.
Resolving disagreements or conflicts among surrogate decision-makers or between surrogates and healthcare providers
Sometimes, there may be more than one surrogate decision-maker for a patient, such as multiple family members or friends who have equal priority according to state laws. In such cases, there may be disagreements or conflicts among them about what the patient would want or what is best for them. Alternatively, there may be disagreements or conflicts between the surrogate decision maker and the health care provider about the diagnosis, prognosis, treatment options, goals of care, etc. In such cases, the care team may face challenges in reaching a consensus or a compromise with other parties involved. They may have to deal with emotional stress, communication barriers, power dynamics, legal implications, etc.
Respecting the patient’s cultural, religious, or personal beliefs and values
Patients’ preferences are always influenced by their cultural, religious, or personal beliefs. There are times when these values differ from those of the surrogate decision maker or the health care provider. For example, the patient may belong to a culture or religion that prohibits certain treatments such as blood transfusions, organ donations, etc., or that prescribes certain rituals or practices such as prayer, fasting, etc. In such cases, the surrogate decision-maker may face challenges in respecting the patient’s beliefs and values while also considering their medical needs and interests. They may have to understand and appreciate the patient’s worldview, perspective, and identity, and avoid imposing their own assumptions, or judgments.
Dealing with uncertainty or ambiguity in the patient’s prognosis or treatment options
The patient’s condition is often uncertain or ambiguous, such as when they are in a persistent vegetative state, a minimally conscious state, or a locked-in syndrome. In such cases,
the surrogate decision-maker may face uncertainty or ambiguity about the patient’s chances of recovery, quality of life, or suffering. They may also face uncertainty or ambiguity about the benefits and burdens of each treatment option, such as life-sustaining treatments, palliative care, or withdrawal of treatment. They may have to deal with conflicting evidence, expert opinions, or ethical arguments.
Ethical Frameworks for Surrogate Decision Making
To analyze and evaluate the ethical situations that arise in surrogate decision-making, we can use different ethical theories that provide us with frameworks and guidelines for moral reasoning and action. Some of the main ethical theories and principles that are relevant for surrogate decision-making are:
- Focuses on duty to respect patient rights and dignity.
- Actions are inherently right or wrong.
- Act according to universal moral rules.
- Example: Honor advance directive or proxy’s decision, even if against our own judgment.
- Focuses on outcomes and consequences.
- Act to maximize happiness or well-being of everyone affected.
- Example: Choose treatment option with highest benefit-to-burden ratio, even if violates wishes or values.
- Focuses on character and motives of surrogate decision-maker.
- Act according to moral virtues.
- Example: Act with charity towards patient and surrogate, even if conflicts with own views or interests.
- Focuses on four principles: autonomy, beneficence, nonmaleficence, and justice.
- Balance and weigh principles according to relevance and importance.
- Example: Apply standard of substituted judgment when possible, switch to standard of best interests when necessary, while also considering benefits and harms of each treatment option.
These ethical theories can help us understand and address the ethical situations that arise in surrogate decision-making. However, they may not always be consistent or compatible with each other or with the patient’s wishes or values. Therefore, we need to use critical thinking and moral judgment to apply them appropriately and respectfully in each case.
Human Dignity and Charity as the Basis of Ethics
I would like to propose a different perspective on ethics than these common modalities. I see the foundation of ethics as human dignity and charity as our duty to respond to the dignity of each patient.
Human dignity is the inherent worth and value of every human being regardless of their condition or circumstances. It is based on the idea that humans are created in the image and likeness of God and that they have a unique and irreplaceable role in God’s plan. Human dignity is not something that can be earned or lost, but something that is given and recognized by God and by others. This dignity implies that humans have certain rights and responsibilities that stem from their nature and destiny as God’s children.
Charity is the virtue of loving God above all things and loving our neighbor as ourselves. It is based on the idea that God is present in the other. As Jesus said, “What you did not do for one of these least ones, you did not do for me.” (Matt 25:45) Charity is not just a feeling or an emotion, but an action to will the good of the other as other. It implies that we seek to know, understand, respect, serve, and help others according to their needs and desires. This is all done without expecting anything in return.
Human dignity and charity relate to ethics because they provide us with a foundation and a motivation for moral action. They help us answer the questions: why should we act morally? what should we do? how should we do it? Human dignity tells us that we should act morally because we respect ourselves and others as persons with inherent worth and value. Charity tells us that we should act morally out of love for God and neighbor. A charitable response to the human dignity of the other calls us to: act in ways that protect, promote, and enhance human dignity in ourselves and others. They call us to manifest goodness through our deeds with generosity, compassion, mercy, forgiveness, justice, and peace.
Human dignity and charity, as applied to surrogate decision-making, calls us to:
- Recognize that every patient has innate dignity that deserves respect and protection. We should treat people as subjects and ends in themselves not as objects or means to an end but as. We should respect their will or interests as far as possible, and not impose our own will or interests on others.
- Act with charity towards patients by willing their good as they determine it to be good. We should concern ourselves with our neighbor’s flouring and avoid acting out of selfishness or indifference. We should seek to fulfill them as best as we can in alignment with their good, and not ignore or neglect their needs or desires.
- Avoid intrinsically evil actions that violate human dignity such as euthanasia, abortion, etc. We should preserve and protect life and health as much as possible not intentionally cause or hasten death or harm to any human being. This is true even if the patient desired it themselves. Desiring a patient’s good implies a holistic perspective. This perspective includes respect for their wishes, but this does not include an expectation to cooperate with them.
- Promote charity as the ultimate goal of ethics. We should act out of love not out of fear or duty alone. We should pursue the other’s good, and not individual satisfaction. We are often content with doing the minimum required by law, but charity calls us to do more than what is expected with grace and virtue.
I propose that we focus on the fundamental elements of relationships and dependencies in human life, charity, and human dignity. This is fulfilled by contextualizing and promoting the well-being of caregivers and care-receivers in a network of social relations. This form of ethics emphasizes the themes of relationality, viewing situations from multiple perspectives, learning from others, and mutual problem-solving. It gives precedence to contextual, concrete knowledge and to values such as attentiveness, responsibility, competence, inclusion, and responsiveness. For example, I would argue that we should act with empathy and compassion towards both the patient and the surrogate by considering their needs, feelings, and perspectives, even if it requires us to deviate from strict rules or principles.
Surrogate decision-making is when someone makes choices for another person who cannot do so themselves. It can raise ethical questions about what is best for the person and how to respect their wishes. In this essay, I argued that ethics is based on human dignity, which means recognizing the value and worth of every person. I also suggested that charity, or love, is the proper response to human dignity. I used these ideas to explain how we can approach ethical dilemmas in surrogate decision-making.
Let me know if you enjoyed reading this essay and learned something new about surrogate decision-making. If you want to know more, you can look for real-life examples and cases of surrogate decision-making and think about how you would apply human dignity and charity in those situations. You can also share your opinions and questions with me by leaving a comment below or tweeting me at @PaulWagle. I would love to hear from you and learn from your perspective. Thank you for your time and attention!