INTRODUCTION

The challenges of making medical decisions at the end-of-life present a profound and intricate dilemma as patients confront the limitations of their aging bodies. In many cases, aggressive treatments are no longer tenable, and the time required to derive benefits from such interventions may exceed the patient’s remaining life expectancy. As a result, patients nearing the end-of-life often find themselves grappling with an alarming frequency of avoidable emergency department visits and hospital admissions. These encounters not only fail to enhance their well-being but also serve to diminish their quality of life. There is a pressing need for culturally sensitive approaches to navigate these complex end-of-life medical decisions, regardless of the diverse settings in which they occur. By acknowledging and respecting cultural differences, healthcare professionals can better align their care with patients’ goals and values, thereby providing a more compassionate and personalized approach to end-of-life care. The central focus of this chapter is to delve into various facets of end-of-life.

PATIENT’S CHALLENGES AT THE END-OF-LIFE

As patients get older, their body may not be able to withstand an aggressive or invasive treatment, or the time to benefit from treatment may exceed their life expectancy. The importance of proper end-of-life care is underlined by the fact that patients at the end-of-life currently experience high rates of avoidable hospitalizations and emergency department visits. These occurrences are linked to poor quality of life, emphasizing the need for better medical decision-making. The way forward is to embrace palliative care. It goes beyond relieving suffering and aims to prevent possible suffering. With proper palliative care intervention, studies have documented reductions in emergency department visits, hospital admissions, and intensive care unit admissions. For patients with cancer, and also for patients with noncancer illnesses related to chronic organ failure, e.g., heart failure, chronic obstructive pulmonary disease, chronic kidney disease, palliative care increases the likelihood of death at home.

GOAL-CONCORDANT CARE

A core theme in healthcare and palliative care in particular is “Goal-Concordant Care”, which is care that is closely aligned with individual patients’ goals, respecting their cultural context and personal values. Effective communication and collaboration between clinicians, patients, and families are vital in ensuring goal-concordant care. Several preconditions need to be met to facilitate end-of-life medical decision-making. Understanding the disease trajectory, prognosis, and patient preferences are critical. Although several distinct disease trajectories have been recognized, the course of disability in the last year of life does not follow a predictable pattern based on the condition leading to death, particularly for patients with multiple comorbidities. The current single disease models are problematic, because many patients with chronic illness have multiple comorbidities. The surprise question, “Would I be surprised if this patient died in the next year?” has a high negative predictive value, but low positive predictive value, indicating a clear need for better prognostic models to make informed decisions, as is also the case with the clinical frailty scores that predict the 1-year survival after acute care presentation to the emergency room.

END-OF-LIFE CONVERSATIONS

Timely end-of-life conversations has been shown to lead to better quality of life, reduced use of life-sustaining treatments, early hospice referrals, and better quality of death with less physical distress. Preparing for the end-of-life also results in improved bereavement outcomes for families. Evidence shows no increased depression, anxiety, or hopelessness related to such discussions. Nonetheless, our communication about serious illness care is clearly deficient, while there are good tools and guidance available. When a doctor indicates that the end is near, patients and family find it often hard to believe. Surveyed physicians perceive cultural barriers, family member-related factor, and patient-related factor as the most important barriers to goals of care discussions. Notably, physicians view, in general, their own limitations of less importance, while proper end-of-life discussions ask for a particular set of communication skills. Physicians should educate patients and families on the importance of discussing goals and values about care and encourage discussions beyond medical goals, considering nonmedical aspects of life that hold significance for patients. Patient and family must feel free to share their concerns and fears with the doctor. The physician should have a systematic approach to identify at-risk patients and initiate end-of-life discussions before crises occur.

PHYSICIAN’S ETHICAL DILEMMA IN DECISION-MAKING AT THE END-OF-LIFE

A physician faces a dilemma in medical decision-making at the end-of-life. There is a need for balancing individual patient care with societal and economic considerations. Physicians are bound to act in the best interests of the patient both by law and by professional codes; their primary duty is always to the patient. Physicians should acknowledge, however, that they are well placed to make informed decisions toward patient care that can include economically smart choices, as long as patient care does not suffer. For individual patients, interventions such as admissions to hospital, admissions to intensive care, or visits to emergency departments might be justifiable, given specific care needs and circumstances. On a large scale, however, these interventions are often medically futile, costly to society and individuals, and even potentially harmful to patients with life-threatening illness at the end-of-life. This may conflict with one’s duty to the patient versus a duty to the public healthcare system and society. It is important to define “meaningful recovery” or “meaningful life” considering patients’ values, beliefs, and quality-of-life factors. Meaningful recovery of life includes being aware of oneself and others, the ability to interact in a meaningful and real way with others and the surrounding environment, and a level of quality of life that the patient deems acceptable, or to that which the average, reasonable person deems acceptable. Physicians should respect cultural perspectives that may influence what patients consider acceptable levels of quality of life.

In addressing challenging end-of-life decisions, such as withholding or withdrawing medical interventions in clinical practice, guidance can be found in the four pillars of medical ethics, i.e., respecting the autonomy of the patient (self-determination), doing good (beneficence), promoting fairness (justice), and avoiding harm (nonmaleficence).

GUIDING QUESTIONS ADDRESSING PROFESSIONAL INTEGRITY

In this decision-making process, physicians should reflect on their own professional integrity when confronted with medical decision-making in complex health issues. The following questions can be used for guidance:

• How do we make a care plan, when we are still uncertain about the diagnosis or prognosis but need to act now?
• What care options should be offered?
• What should we do when the patient’s or family’s goals seem inconsistent with traditionally recognized goals of care?
• How do I resolve professional issues, such as truth-telling, coercion, or conflict of interest?

Several professional organizations have published a position statement providing guidance on how to handle situations where patient’s or family’s goals are conflicting with what the treating healthcare team deems appropriate.

CONCLUSION

This chapter emphasizes that navigating end-of-life medical decisions with cultural sensitivity is not merely a healthcare aspiration but an imperative. Cultural nuances and individual values must be at the forefront of these critical deliberations, as they profoundly impact the patient’s quality of life and the ethical considerations that guide medical decisions. By embracing palliative care, improving communication, and fostering early conversations, healthcare professionals can contribute to a higher quality of life for patients and their families during this challenging phase. The ethical framework provided by the four pillars of medical ethics offers guidance in addressing difficult decisions, ensuring that autonomy, beneficence, justice, and nonmaleficence are upheld. Ultimately, recognizing and respecting cultural and social differences in end-of-life care is fundamental to delivering compassionate and patient-centered health care, upholding the principles of medical ethics, and enhancing the well-being of those facing the end-of-life.

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