Introduction

Palliative care prioritizes relief from suffering and improving quality of life for patients and their families during advanced stages of illness. It emphasizes holistic support, addressing physical, emotional, social, and spiritual needs. However, as the patient’s condition deteriorates, ethical dilemmas often arise, particularly around life-sustaining treatments and the extent of intervention at the end of life. In such scenarios, caregivers frequently assume the role of surrogate decision-makers, interpreting the patient’s preferences and navigating complex moral landscapes. This responsibility places caregivers at the heart of ethical decision-making in palliative care, requiring them to balance the principles of autonomy, beneficence, non-maleficence, and justice.

The caregiver’s choices and decisions are influenced by various factors, including their relationship with the patient, cultural and religious beliefs, and the healthcare system’s approach to end-of-life care. For instance, cultural norms and spiritual frameworks often shape attitudes toward suffering and death, significantly impacting caregivers’ decisions about continuing or discontinuing aggressive medical interventions (1, 2). Caregivers from cultures that emphasize familial decision-making may prioritize collective input, while those in more individualistic societies may focus on respecting the patient's stated wishes. These differences underscore the need for healthcare providers to adopt culturally competent practices to support caregivers in ethical decision-making.

Despite their critical role, caregivers frequently experience psychological and emotional strain when faced with complex ethical decisions. A systematic review highlighted that surrogates often struggle with feelings of guilt and doubt about their choices, exacerbated by inadequate preparation and lack of support from healthcare teams (3). The emotional toll can hinder caregivers’ ability to make decisions aligned with the patient’s values and preferences, emphasizing the importance of clear communication and shared decision-making frameworks. Studies suggest that healthcare providers must actively involve caregivers in discussions and provide them with clear, compassionate guidance to alleviate this decisional burden (3, 4). Moreover, caregiving during palliative care is not limited to ethical dilemmas but extends to the practical challenges of providing physical and emotional support to the patient. Research shows that caregivers often experience long-term impacts on their mental health and well-being, further underscoring the necessity of tailored interventions that address their needs (4). Integrating caregiver support into palliative care not only improves the quality of care but also ensures that decisions reflect both the patient’s and the caregiver’s perspectives, fostering a more ethically sound approach.

Review

Caregivers play an essential role in ethical decision-making in palliative care, often acting as the patient’s voice when they lose the ability to make decisions themselves. Their involvement is influenced by several factors, including their understanding of the patient’s wishes, cultural norms, and emotional responses to the situation. The stress of balancing these responsibilities can lead to significant moral distress, especially when decisions about end-of-life care, such as the withdrawal of life-sustaining treatments, conflict with personal or societal values (5). For example, caregivers may face ethical conflicts when their beliefs or expectations differ from those of the healthcare team or when the patient’s previously expressed preferences are unclear.

Effective communication between caregivers and healthcare professionals is critical in resolving such conflicts. Studies have shown that when healthcare teams engage caregivers in meaningful discussions, it helps clarify the patient’s preferences, reduces caregiver burden, and fosters collaborative decision-making (6). This approach ensures that ethical principles, such as autonomy and beneficence, are upheld while addressing the emotional and moral challenges faced by caregivers. By providing comprehensive support and involving caregivers in shared decision-making frameworks, healthcare providers can mitigate ethical dilemmas and improve the overall quality of palliative care.

Caregiver Perspectives on Balancing Quality of Life and Treatment Goals

In palliative care, caregivers often find themselves navigating the delicate balance between improving the patient’s quality of life and pursuing treatment goals. These decisions are emotionally charged and influenced by a variety of factors, including cultural values, personal beliefs, and the healthcare team's input. Caregivers’ perspectives are shaped by their proximity to the patient’s experiences, allowing them to advocate for care that aligns with the patient’s preferences and overall well-being (7). However, the stress of balancing competing priorities can create ethical and emotional challenges, particularly when caregivers must reconcile their hopes for recovery with the realities of a terminal prognosis.

One of the main difficulties caregivers often face is interpreting and honoring the patient’s wishes when they are unable to communicate effectively. Advance care planning can help mitigate this uncertainty, but its implementation remains inconsistent across healthcare settings. Caregivers often report feeling torn between the desire to prolong life and the recognition that aggressive interventions may diminish the patient’s comfort. Research suggests that caregivers who lack adequate preparation or knowledge about the implications of various treatment options may inadvertently prioritize curative measures over palliative goals, even when such interventions may not improve the patient’s quality of life (8, 9). Another layer of complexity arises from cultural and religious factors that shape caregivers’ perceptions of suffering, death, and dignity. For example, in cultures where life is regarded as sacred and interventions to prolong it are prioritized, caregivers may advocate for continued aggressive treatments despite limited clinical benefit. Conversely, caregivers from cultures that emphasize comfort and holistic care may be more likely to opt for treatments that prioritize the patient’s quality of life over longevity (10). These cultural nuances highlight the importance of healthcare providers adopting culturally sensitive communication strategies to better understand and address caregivers’ values.

Caregivers also grapple with their own emotional and psychological burdens, which can influence their decision-making. Feelings of guilt, fear, and grief are common, and these emotions can complicate the process of balancing quality of life with treatment goals. A caregiver’s personal desire to “do everything possible” often clashes with the recognition that such efforts might lead to increased suffering for the patient. Additionally, the stress of navigating these decisions can have long-term implications for caregivers’ mental health, with many reporting heightened risks of anxiety, depression, and even post-traumatic stress following the loss of a loved one (11). Effective communication between healthcare teams and caregivers plays a critical role in easing this burden. Studies indicate that when healthcare providers engage caregivers in open, empathetic discussions about treatment goals and care priorities, it can foster a shared understanding and reduce decisional conflict. Caregivers who feel supported by the healthcare team are more likely to make choices that align with both the patient’s preferences and their own values, reducing the emotional toll of decision-making. This underscores the need for structured frameworks that involve caregivers as active participants in care planning, ensuring that their perspectives are integrated into the ethical decision-making process (12).

Ethical Challenges Faced by Caregivers in End-of-Life Decision-Making

In Muslim societies, ethical decisions in palliative care are guided by the sanctity of life, which prohibits practices such as euthanasia and deliberate life-shortening interventions. However, dilemmas still arise in scenarios such as deciding on do not resuscitate orders. While Islam permits withholding or withdrawing futile medical interventions if they prolong suffering without offering meaningful benefit, caregivers often struggle with these decisions. The emotional burden of deciding whether to fight for their loved one’s life or accept the inevitable end is profound, particularly when the patient is in the advanced stages of a terminal illness, such as cancer (13).

One of the most difficult conversations healthcare providers often face is helping families understand the implications of shifting a patient to intensive care at the end of life. For example, placing a terminally ill patient in the intensive care unit often involves invasive procedures, such as intubation, central lines, and repeated blood draws. While these measures might temporarily sustain physiological functions, they frequently add significant physical suffering for the patient and emotional distress for the family. Families may feel obligated to “do everything possible,” yet this approach can unintentionally deprive them of meaningful time with the patient when they are still conscious and capable of connecting emotionally (14). Empathy and time are critical when addressing these issues with families. Doctors must take a patient-centered and compassionate approach, carefully explaining how aggressive interventions may limit the patient's quality of life during their final days. For example, in advanced cancer, where the prognosis is grim, families need to understand that prioritizing comfort through a palliative care plan can provide the patient with dignity and relief from suffering. Families often find peace in knowing that the patient can remain at home, surrounded by loved ones, rather than in a sterile hospital environment, isolated and heavily sedated (15, 16).

A well-communicated palliative care plan involves explaining the benefits of managing symptoms such as pain and breathlessness at home. For families, the realization that they can create a peaceful and loving environment, where the patient remains as alert and comfortable as possible, often alleviates the guilt associated with foregoing intensive interventions. However, reaching this level of acceptance requires healthcare providers to offer continuous support and reassurance. These discussions must be free of judgment, acknowledging the family’s deep emotional struggle and their instinct to fight for their loved one’s survival (17). Healthcare teams must also address cultural and religious considerations. In Islam, accepting a natural death without unnecessarily prolonging suffering aligns with the principle of mercy. Families often draw strength from understanding that providing comfort and companionship during a loved one’s final moments is deeply valued in both faith and medical ethics. Doctors play a pivotal role in bridging the gap between medical realities and emotional needs, guiding families through these challenging decisions with respect, patience, and sensitivity (18).

Collaborative Approaches to Integrating Caregiver Input in Ethical Choices

In palliative care, the role of caregivers in ethical decision-making cannot be overlooked, especially as their insights often provide a vital link to the patient’s preferences and values. Integrating caregivers into the decision-making process requires a deliberate and empathetic approach that respects their unique perspectives and emotional challenges. Healthcare teams that foster collaboration with caregivers ensure that decisions are grounded in both medical evidence and the cultural and emotional realities of the family (19).

Facilitated discussions between caregivers and healthcare providers create an environment where information can be shared transparently. These discussions are more effective when healthcare professionals focus on creating mutual understanding, explaining the patient’s condition in clear terms, and outlining the available options without imposing decisions. Such conversations reduce misunderstandings and ensure caregivers feel supported as they navigate complex choices. When caregivers are actively involved in these discussions, they are better equipped to contribute meaningfully to care planning while feeling reassured that their concerns are heard (20).

Caregiver perspectives are often shaped by deep emotional bonds and cultural influences. In Muslim societies, decision-making frequently involves extended family members, reflecting collective values and religious considerations. Healthcare providers must engage with these dynamics, ensuring that conversations about care align with ethical and cultural frameworks. For instance, in cases where the continuation of invasive medical interventions could prolong suffering, discussions should focus on how Islamic teachings emphasize compassion and the alleviation of distress. By addressing the family’s spiritual concerns, healthcare teams can build trust and promote ethical choices that respect both the patient’s dignity and the family’s values (21).

Informed and collaborative decision-making frameworks help caregivers understand the implications of various options. Presenting medical facts alongside compassionate guidance allows caregivers to reflect on how different choices might impact the patient’s well-being. For example, when deciding between intensive hospital care and home-based palliative support, caregivers benefit from understanding how remaining in a familiar environment might enhance the patient’s comfort and create opportunities for meaningful family interactions. This collaborative approach shifts the focus from solely clinical outcomes to a holistic view of the patient’s remaining time (22). Engaging caregivers in decision-making processes also involves addressing their emotional vulnerabilities. Healthcare providers who approach these interactions with empathy and patience help caregivers process their feelings of doubt, guilt, and fear. Support systems, such as family meetings or counseling sessions, can provide caregivers with the confidence to voice their concerns while making decisions rooted in the patient’s best interests. These interventions ensure that caregivers are not isolated in their roles but rather guided and empowered as key contributors to the care process (23).

Conclusion

Involving caregivers in ethical decision-making is essential for ensuring that palliative care aligns with both the patient’s wishes and the family’s values. Through empathetic communication and culturally sensitive collaboration, caregivers can navigate complex choices with confidence and support. Balancing medical realities with emotional and spiritual needs fosters decisions that uphold patient dignity while strengthening family bonds. Such an approach emphasizes the importance of compassion and trust in end-of-life care.

Disclosure

Conflict of interest

There is no conflict of interest.

Funding

No funding.

Ethical consideration

Non applicable.

Data availability

Data that support the findings of this study are embedded within the manuscript.

Author contribution

All authors contributed to conceptualizing, data drafting, collection and final writing of the manuscript.