Question

Paper is a about an ethical dilemma clinical scenario between a son and daughter of a patient that disagree about end of life decisions.

1. Identify Key Participants/stakeholders
   • Who is legitimately empowered to make this decision?
   • Who is affected and how?
   • What is the level of competence of the person most affected in the situation?
   • What are the rights, duties, authority, context, and capabilities of the participants?

Answer 1

ANSWERS

Ethical Dilemmas at the End of Life. : 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.

This is especially common during end-of-life (EOL) care, where patients and caregivers may experience charged emotions, grief, and loss.

“Nurses need to practice communication techniques so that they become more comfortable and skilled with having these difficult conversations with patients and families.

1. Identify Key Participants/stakeholders

A Team Approach to Ethical Dilemmas

• As with much of the care provided at critical situations, interdisciplinary work is crucial at EOL as well.
• Using the expertise of team members during the late stages of disease can help eliminate potential ethical issues and encourage patients and their families to understand, cope, and accept an uncertain or limited prognosis.
• “Caring for patients at EOL requires close collaboration between all members of the healthcare team.
• “Nurses can help to recognize patients’ values, beliefs, culture, and support systems so that their dignity can be honored at EOL,” “Chaplains, psychologists, child life specialists, social workers, and others often have a tremendous amount of skill in assisting nurses to support families as well.”
• When faced with difficult ethical conundrums, it’s important to remember that resources are available to nurses. Moreover, they not alone. “Ethics consultations are available in most settings, and it’s always helpful to seek the guidance of colleagues.
• 2. Who is legitimately empowered to make this decision?

End-of-life (EOL) decision making in acute care is complex, involving difficult decisions, such as whether to initiate or discontinue life support, place a feeding tube or a tracheostomy, or initiate cardiopulmonary resuscitation (CPR) in the event of a cardiac arrest.

Because of the severity of illness and the nature of treatments, acutely ill patients often lack decision making capacity, which puts the family members in the role of decision-maker .

One of the biggest challenges to EOL decision making is prognostic uncertainty and determining when to initiate EOL discussions with family members .

Nurses and physicians express fear of removing all hope, making the wrong decision or giving up too soon. Further, it is difficult emotionally for both family members and health care professionals to give up on curative care.

Thus, EOL discussions may begin when the physician decides to discuss a do-not-resuscitate (DNR) order, which often takes place when the prognosis is poor and the patient is no longer able to participate

Although it is the role of the physician to make a diagnosis and to communicate the diagnosis to the patients or family members, other health care professionals, such as nurses, social workers, and chaplains, have legitimate roles in the EOL decision making process.

Nurses are at the bedside during the dying process; they spend entire shifts with patients and families, they develop trusting relationships, and they are competent to assess patient and family needs.

Nurses gain a unique perspective that allows them to become aware when a patient is not responding to treatment .This perspective places nurses in a position to facilitate EOL decision making.

A systematic understanding of what roles nurses enact and what strategies they use in EOL decision making is necessary to ensure that decisions made are consistent with the patient's and family's goals of care.

3) Who is affected and how?

End-of-life decisions were primarily guided by

• · Clinical factors,
• · The patient-related physical factors
• · Emotional, and cognitive symptoms that are sequelae of the underlying disease or medical treatments.

. The physician was the healthcare provider most likely to be involved in decision making with patients, family members, and caregivers.

• Individual factors, such as personal beliefs, influenced end-of-life decision making.
• Religion and spirituality did not consistently influence decision making

End of Life decisions are made by considering following aspects

Understanding the options, and a person's desires, can give guidance to

• 1. Determine the best course to take.
• 2. Make sure every decision is clear.
• 3. Issues faced.
• 4. Talking about end-of-life wishes.
• 5. Advance directives and other documents.
• The ethical principles include autonomy, beneficence, nonmaleficence, justice, and fidelity. Physicians should encourage dialogue about end-of- life care and use of advance directives so that autonomy can be preserved even if patient's decision- making capacity is lost.

End of Life decisions are made by :-

Without legal guidance, the most frequent hierarchy is the spouse, then the adult children, and then the parents.

Physicians should encourage the decisions that best incorporate the patient's values, realizing that the most appropriate source for this information may not be the next of kin.

4) What is the level of competence of the person most affected in the situation?

• Competency is a global assessment and legal determination made by a judge in court. Capacity is a functional assessment and a clinical determination about a specific decision that can be made by any clinician familiar with a patient’s case.
• Hospitalists frequently encounter situations in which a patient’s capacity is called into question; in most cases, this is a determination a hospitalist can make independent of consultants.
• The four key components to address in a capacity evaluation include: 1) communicating a choice, 2) understanding, 3) appreciation, and 4) rationalization/reasoning.
• Communication. The patient needs to be able to express a treatment choice, and this decision needs to be stable enough for the treatment to be implemented. Changing one’s decision in itself would not bring a patient’s capacity into question, so long as the patient was able to explain the rationale behind the switch. Frequent changes back and forth in the decision-making, however, could be indicative of an underlying psychiatric disorder or extreme indecision, which could bring capacity into question.
• Understanding. The patient needs to recall conversations about treatment, to make the link between causal relationships, and to process probabilities for outcomes. Problems with memory, attention span, and intelligence can affect one’s understanding.
• Appreciation. The patient should be able to identify the illness, treatment options, and likely outcomes as things that will affect him or her directly. A lack of appreciation usually stems from a denial based on intelligence (lack of a capability to understand) or emotion, or a delusion that the patient is not affected by this situation the same way and will have a different outcome.
• Rationalization or reasoning. The patient needs to be able to weigh the risks and benefits of the treatment options presented to come to a conclusion in keeping with their goals and best interests, as defined by their personal set of values. This often is affected in psychosis, depression, anxiety, phobias, delirium, and dementia.

Common law dictates that individuals possess autonomy and self-determination, which encompass the right to accept or refuse medical treatment.

Management of medical treatment can be complicated in situations when the ability of the patient to make reasonable decisions is called into question. Our legal system endorses the principle that all persons are competent to make reasoned decisions unless demonstrated to be otherwise.

The role psychiatric consultants take in capacity assessment can assist the primary care physician confronting the complexities encountered when attempting to treat the incapacitated or incompetent patient.

A corollary to the basic foundation established by the Bill of Rights is the common-law principle of self-determination that guarantees the individual's right to privacy and protection against the actions of others that may threaten bodily integrity. An extension of self-determination includes the right to exercise control over one's body

                     For example, the right to accept or refuse medical treatment. It is expected that when one freely accepts or refuses treatment, he or she is competent to do so, and is, therefore, accountable for the choices made. However, concerns naturally arise when an individual is deemed to be incompetent, specifically, to protect the patient from the consequences of imprudent decision making. An individual determined to be incompetent can no longer exercise the right to accept or refuse treatment.

To ensure that individuals retain as much autonomy or self-determination as is legally possible, the court makes a determination of one's competence in a task-specific manner. For example, one can be determined to be incompetent to execute a will, but may be deemed competent to make treatment decisions.

Capacity refers to an assessment of the individual's psychological abilities to form rational decisions, specifically the individual's ability to understand, appreciate, and manipulate information and form rational decisions. The patient evaluated by a physician to lack capacity to make reasoned medical decisions is referred to as de facto incompetent, i.e., incompetent in fact, but not determined to be so by legal procedures. Such individuals cannot exercise the right to choose or refuse treatment, and they require another individual, a de facto surrogate, to make decisions on their behalf.

5) What are the rights, duties, authority, context, and capabilities of the participants?

Right _: Autonomous Decision Making

“Decision making” is itself a very complex process of thoughts and sets-up various challenges for patients and their families to make up an end-of-life care decision.

Persons have a right to put forward their end-of-life treatment preferences. 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 treatments and their prognosis. This right of autonomy has some limitations, and hence faces an ethical dilemma. The healthcare professional should respect the patient’s autonomy while considering its limitation and carry out their duties to benefit the patient without doing harm.
• To elaborate further, autonomy gives patients’ a right to control their treatment according to their preferences, though many a times their autonomy is not respected. They receive end-of-life care which is in-consistent with their end-of-life care preferences . This gives importance to the ethical issue of autonomy surrounding end-of-life care preferences.

Duty and Authority: Physician’s Role and Responsibilities to Resolve the Issue

Healthcare professionals can play an important role by providing detailed information about an advanced medical treatment which can be used during end-of-life care.

Physicians can perform their duties rightfully by providing patients detailed information about the benefits, limitations and drawbacks of that treatment.

Physician can work according to “deontological theory” and perform their duties to gain greatest good for the patient and act for patients benefit .Even though the patient has autonomy to choose a treatment, physician can explain its implications and try to emphasize on its consequences. Here, the patient has to perform a self-beneficence duty to take an autonomous decision as a competent individual to undergo the treatment and prolong life or forgo a futile treatment for the greatest good of society by saving cost and emotional stress.

If the patient insists to prolong life with medically advanced treatment intervention, which according to physician evaluation might be futile, physician has the upmost responsibility to explain the information facts about withholding or withdrawing the medical treatment and see to it that there is no unnecessary utilization of resources for the futile treatment without causing harm to the patient.

Physicians should respect the beliefs and values of that patient before withholding or withdrawing a treatment or giving an order for DNR (do not resuscitate) or resuscitation. Physician, additionally has a duty to preserve patient’s life but this duty is not to be confused with unnecessary use of resources and inflicting more harm than good to the patient by continuing medically futile treatments .

Physicians have to reach a mutual agreement with the patient about withholding or withdrawing a futile treatment and explain the drawbacks of unrealistic expectations from the treatment.

Communication between patient and families, discussing patient’s goal regarding treatment and care, can be helpful to bridge a gap between the patient, their families and the physician.

Capability of participants

Patients are often encouraged to participate in treatment decision-making. In the last phase of life treatment decisions differ as they often put more emphasis on weighing quantity against quality of life, such as whether or not to start treatment aimed at life prolongation but with the possibility of side effects.

Ill patients wanted their physician to participate in the treatment decision-making process. The extent to which patients themselves preferred to participate seemed to depend on how patients saw their own role or assessed their own capabilities for participating in treatment decision-making. Patients foresaw a shift in the preferred level of participation to a more active role depending in the later phase of illness when life prolongation would become more limited and quality of life would become more important.

Patients vary in how much involvement they would like to have in upcoming treatment decision-making. Individual patients' preferences may change in the course of the illness, with a shift to more active participation in the later phases. Communication about patients' expectations, wishes and preferences for participation in upcoming treatment decisions is of great importance.

Thus, an individual determined to be incompetent can no longer exercise the right to accept or refuse treatment. Competency is a legal term referring to individuals “having sufficient ability, possessing the requisite natural or legal qualifications” to engage in a given endeavor.

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