Patient Autonomy and Healthcare decision-making

Introduction

In the spirit of respecting patient autonomy, clinicians must be ready to acknowledge that patients have the right to make decisions regarding their care, even when such decisions contradict the clinicians. But in such a scenario, the clinicians are faced with an array of ethical dilemmas, especially considering the possibility that the patient may make decisions that are detrimental to their health and well-being (Messinger, 2019). This essay refers to a case study that entails various instance of ethical dilemma healthcare professionals, patients and their families. The scenario is based on an area of the author’s experience, even though some details have been changed to conceal the patient’s identity and maintain patient’s confidentiality. This essay also seeks conduct an analysis of ethical decision-making in medical decision-making. In the process, the essay will explore the intricacies of professional healthcare when the patient does not have the capacity to approve of the medical team’s prescribed duty to promote recovery or save a life.

Other ethical questions that the essay will explore are the conflicts between the demand of commonly held morals, the conflict between the health team’s respect to patient’s next of kin’s decision, who have given explicit decisions for medical interventions towards the patient. Noteworthy though, if the patient had the mental capacity, these dilemmas would not present. As part of achieving the essay’s objectives, there will be a detailed evaluation of the human rights and mental capacity laws about adult patients, to evaluate the central concept that mental capacity law is meant to promote patient-centered care – care that respects the patient’s values, whether or not they have the capacity to make the decisions.

The Scenario

John, a 60-year-old man with COPD, has been a patient in the intensive care unit for a week. He has been sedated and ventilated (a tube placed in the airway is keeping the throat open while a machine simulates inspiration and expiration) for this whole time, requiring increasing amounts of oxygen and support.

In the last month, he has suffered pneumonia progressing to affect all lobes of the right lung. Before being sedated John was confused and lacked the capacity or ability to voice his views. All that followed was undertaken in his best interest. Despite ventilation and aggressive antibiotics, it has become clear that this event is non-survivable. Although he lives alone, he has a large extended family with two sisters being the closest relations. The family has agreed that curative therapy has failed and that the focus should now be on making John comfortable in his final days.

In keeping with the new palliative approach, life-extending interventions (antibiotics, inotropes, VTE prophylaxis etc.) have been removed. Due to the severity of his illness and the likelihood of distress, sedation and strong analgesics have been continued.

The patient remains intubated and ventilated at present. John’s sisters are increasingly acrimonious regarding whether the endotracheal (ET) tube should be removed.

On one hand, mechanical ventilation is a life-extending intervention, which risks prolonging John’s suffering. On the other hand, removal of the ET tube would expedite John’s death, which could be assistance.

Background

Blanke et al (2017) insisted that facilitating patient autonomy requires both agency and liberty and that liberty is determined by persuasion, manipulation and coercion. However, the concept of informed consent is a basic tenet of western medical ethics, some of which have legally originated from previous case laws such as Canterbury v. Spence 1972 (Chen, 2019). as such, clinicians must respect patient’s autonomy by giving them all the information they need to understand the benefits and risks of any proposed medical intervention and the available intervention alternatives so that they can independently decide (Houska & Loucka, 2019).

The patients’ independence is perhaps given the highest priority in Western bioethics. In the UK, the role of other parties who might influence the patient into making decisions and choices that do not put their interest and best wishes ahead are circumscribed by legal bioethics. Even though the main intention of these practice standards is to prevent patients from being coerced by medical professionals; they somewhat ignore that the patient is part of the family. According to Chen (2019), patients often prefer to consider their family’s opinions when making medical decisions; just as they would do in many other decisions outside the medical context. Respecting the patient’s autonomy, therefore, includes respecting how they wish to make their decisions, even if those decisions involve allowing their family’s decisions to be the final word at the expense of their own (Houska & Loucka, 2019).

The influence of family

While clinicians are often reminded to respect the patient’s liberty, they often ignore that even family members can coerce, manipulate or persuade the patient (Li & Li, 2017). However, the agency principle allows the patient to consider how their decisions will influence their family members. Consequently, it is socially acceptable and common for patients to consult their family members whenever they want to decide regarding their care. In this regard, Thyden (2017) argued that having a strict focus on autonomy and failing to recognize that patients are part of families can lead to a misunderstanding of decision-making as it pertains to informed consent.

While most families have good intentions while giving suggestions, situations may arise where the family members become unduly manipulative, coercive and persuasive (Rodriguez & Escribano, 2019). In John’s case, the same is not true because the family has not, for example, threatened to withdraw their support if John does not make any decision that desired by them. Instead, John was confused and lacked the capacity or ability to voice his views, and the family has agreed that curative therapy has failed and that the focus should now be on making John comfortable in his final days. There seems to be, therefore, no evidence of coercion from John’s family but rather, the family members seem to have made the decision based on Beuchamp and Childress (2001) description of essential components of informed consent namely disclosure, consent voluntariness and understanding. The doctors seem to have clearly explained to John’s family that despite ventilation and aggressive antibiotics, it has become clear that this event is non-survivable; and they have now made the decision without any undue influence from the doctors that John should be placed on palliative care to ensure that he is comfortable in his final days.

Despite giving their consent, John’s family is still struggling with the conflict between their desire to avoid further aggressive therapy that prolongs John’s suffering and to ‘cut’ John’s life by removing the endotracheal (ET) tube. This conflict has caused discomforts among John’s family, but their decision should be voluntary. In case John would be in the correct mental capacity to make this decision, the dilemma could not arise because as per Kontomanolis et al (2018), some patients decide to make choices that would prolong their lives even if the treatments are harsh.

There is a plethora of research that has investigated how patients and family members prefer medical decisions should be made and the values within which these decisions should be placed. These pieces of evidence could help inform the doctors as they counsel John’s family in making the decision that protects john’s interest while maintaining a close relationship with his family. For example, Rejno et al (2020) conducted a survey among patients and family members about who should have medical information and making decisions as to how their sick relatives should receive treatment as well as how disagreements should be resolved. The study found that most of the respondents preferred that patients, their families and their doctors should collectively participate in resolving their disagreements. This evidence presents John’s doctors with the right approach in case a disagreement arises with regards to removing the endotracheal (ET) tube.

Ethical Challenges

There are several theories and principles of ethics such as the theory of utilitarianism and deontology as well as the four fundamental principles of ethics (Hannig, 2019), all of which apply to John’s case. First, the four principles of ethics include beneficence, autonomy and non-maleficence. The following section demonstrates how each of these principles and theories apply to John’s case, in terms of how they aid decision-making during ethical dilemmas as that presented in John’s case.

Autonomy

The Mental Capacity Act

The principle of autonomy requires that the patient is guaranteed their right to make decisions regarding their treatment and care – decisions which must be respected (Lee & Grube 2017). This principle aligns with the Nursing and Midwifery Council Code of Professional Conduct, section 3.2 (NMC, 2015), which stipulate that health professionals must respect patient’s autonomy – their right to decide whether they should receive treatment interventions.

The Autonomy ethical principle stipulates that patients have the rights to control their own lives and therefore can decide whether they should receive a treatment intervention or not. But some patients such as John, are classified as incompetent and therefore cannot make such decisions. But the Mental Capacity Act 2005 can be used to explain the general philosophy of whether John’s interest as a patient who is in the minimally conscious state can be served by either continued use of endotracheal (ET) tube.

Section Four of the Mental Capacity Act stipulates how the patent’s best interest observed, interpreted and applied. It challenges how the Airedale NHS Trust v Bland case conceived the application of patient’s autonomy and best interest and suggests objective ways of making decisions on behalf of an incapacitated patient that is consistent with the decision they would have made if they had the capacity. For John’s treatment to be lawful according to the Mental Capacity Act 2005, it is required that:

First, the intervention must be consistent with, or at least reflect the patient’s interests and views; and this may be established through a proven fact about John’s values

Secondly, the intervention may also be considered lawful if, in the face of professional opinion, is in the patient’s best interest; and this should specifically be based on the doctor’s assurance that the intervention is therapeutically appropriate and beneficial.

Lastly, the intervention may be considered lawful if, in reference to the principles of public decision-making, is worth executing depending on the available resources and financial constraints.

It is the nurse practitioner’s role, in this scenario, to explain to John’s sisters these legal requirements and the extent to which their influence any decision made by both themselves and the doctor. The decision to remove or retain the endotracheal (ET) tube would therefore be strictly based on these legal principles, for as long as John remains to be unconscious and unable to make his own decision. Meanwhile, this decision would also still consider the other three ethical principles of non-maleficence and beneficence.

Paternalism

According to Davs & Mathison (2020), the principle of paternalism implies that any instance when the patient’s consent for intervention or treatment is not sought, then the patient’s life is devalued. As such, any time a paternalistic stance is. Any time a paternalistic stance is taken, honesty, truth and individual freedom cannot be exercised, meaning that harm has been done to the patient (Olsen et al, 2017). The principle of paternalism applies in John’s case because it proposes that decisions can be made on behalf of patients by those who have their best interest at heart. Therefore, John’s sisters are seen to be taking a paternalistic approach. In other instances, according to Hannig (2019), medical consultants and nurses who are seen to be aware of all the facts may take the position of experts who know the best view. However, in totality, this principle might result in denying the patient their autonomy and right to fully participate in decisions about their treatment based on the belief that the patient is either not well informed or not in the best capacity than their doctors or families to make best decisions (Liddell & Johnson, 2018). That said, taking a paternalistic stance in John’s case may bring the principle of autonomy into conflict with the other ethical principles of non-maleficence and beneficence.

Utilitarianism

The theory of utilitarianism states that in most situations, actions are considered right in proportion to the extent that they promote happiness, and wrong depending on the extent to which they produce the reverse of happiness – that’s why it is also termed as the ‘greatest happiness principle (Liu et al, 2018). ideally, according to Smart (2020), utilitarianism offers a test that can be useful in deciding whether a decision or action is right or wrong. It provides a mechanism for making decisions in each situation as that of John, regarding removing the endotracheal (ET) tube. Proponents of the utilitarianism theory suggest that nature has awarded mankind with two masters namely pleasure and pain. Consequently, pain and pleasure have evolved into the goals and motivations of all human actions (Schneewind, 2019). However, some moral decisions do not involve getting happiness at all. For example, John’s is undergoing prolonged distress, sedation and strong analgesics resulting from the treatment he is receiving. Similarly, he is currently under mechanical ventilation as a life-extending intervention, which risks prolonging his suffering. Even though his condition is continuing to deteriorate, and John’s life is losing its value, the doctors can prove that it is the only way to minimize John’s pain.

With the development and refinement of the theory of utilitarianism, two branches of utilitarianism have emerged namely Rule utilitarianism and act utilitarianism. Act utilitarianism is more primitive than rule utilitarianism because it basically requires that people examine the consequences of any action in any situation when evaluating what is moral. A typical utilitarian would argue that the correctness of the decision depends several on other aspects of the situation. For instance, in John’s case, the doctor would decide to remove the endotracheal (ET) tube because, considering other aspects of the individual situation like his prolonged suffering, this is the best decision to make.

In conclusion, there is no simple, read the answer to the dilemma that John’s sisters and the care team are in. Identifying the right thing to do in a situation like John finds himself in can take all forms of sensitivity, reasonableness and thoughtfulness. Thinking hard about such situations can help increase our sensitivity, and develop our moral skills, bearing in mind the moral theories that inform the responses to such scenarios. Nonetheless, this paper raises the awareness that patient autonomy is of great significance not only in English health practice but also in English law. To this end, it is justifiable to claim that the principle of patient autonomy is the ultimate ethical principles useful in critical healthcare situations because it advocates for the patient’s interest to be the ultimate basis for the decisions made regarding their treatment and care.

Take a deeper dive into Patient Assessment and Care Planning in Critical Illness with our additional resources.

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The patient remains intubated and ventilated at present. John’s sisters are increasingly acrimonious in regards to whether the endotracheal (ET) tube should be removed.

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