Navigating end-of-life conversations: A reflection on goals of care in Nepal

Introduction

Goals of care (GOC) is a commonly used term to describe the process of discussing a patient’s medical condition and prognosis with the patient, their surrogate, or both. ¹ These conversations focus on aligning medical decisions with the patient’s values, life goals, and preferences. When such discussions involve planning for future medical care, the process is referred to as advance care planning (ACP). ² ACP becomes crucial for patients receiving end-of-life care (EOLC). The National Hospice and Palliative Care Organization defines EOLC as care provided when curative treatment is no longer an option in a patient with a terminal illness and less than 6 months to live. ³ An advance directive (AD) is a legal document made during a period of capacity that guides care in alignment with the patient’s wishes if they become incapacitated. ⁴ There are two types of ADs: a living will and a healthcare proxy. In the absence of a patient’s decision-making capacity, a surrogate decision-maker, referred to as a healthcare proxy or medical power of attorney, may make medical decisions on the patient’s behalf. ⁵ Additionally, a living will is a legal document that outlines a patient’s preferences for life-saving interventions prior to incapacitation, such as cardiopulmonary resuscitation, mechanical ventilation, hemodialysis, and tube feeding.^4,6

The life expectancy of a patient serves as a crucial factor in initiating discussions about their care goals. Various prognostic tools are available to help physicians estimate the disease-specific survival risk. Additionally, if the answer to the question, “Would you be surprised if the patient were to die within the next year?” is “No,” it signals the need to engage in discussions about care goals. ⁷ While the prognostic reliability of the surprise question varies, it remains a straightforward method to prompt these conversations. ⁸

According to the Centers for Medicare & Medicaid Services (CMS), a federal agency in the United States that provides national healthcare insurance to eligible American citizens, two primary guidelines trigger discussions related to EOLC for patients.^9,10 The first pertains to disease progression, which manifests through deteriorating status, worsening symptoms, observable signs, and changes in laboratory results. The second set of guidelines is non–disease-specific and considers baseline criteria. These criteria also include significant comorbidities such as chronic obstructive pulmonary disease, congestive heart failure, and diabetes, among others. Both sets of guidelines play a pivotal role in determining the need for initiating EOLC discussions. ⁹

In a given circumstance, GOC discussions can serve as a gateway to improving the quality of life for patients who prefer not to pursue aggressive treatment. ⁹ A GOC discussion is recommended to be conducted in a chronological sequence, often structured using an effective framework such as REMAP (Reframe, Expect Emotion, Map the future, Align with patient values, Plan treatment). ¹¹ The discussion of GOC is one of the most difficult communication tasks and requires a skillful approach. It is usually preceded by a discussion of prognosis and should usually occur separately from the delivery of serious news to a patient. ¹²

Effective communication about EOLC goals is crucial not only for terminally ill patients but also for their families. Costly treatments during critical phases can impose significant financial and emotional burdens, especially on patients in developing countries and in some developed countries, such as the United States, where patients are often expected to pay substantial portions of their medical bills despite having insurance.^13–15 Engaging in GOC discussions with both patients and caregivers is essential to consider financial implications and patient preferences, helping to prevent undue pressure on families to pursue aggressive treatments when the patient cannot express their wishes. ¹³

While situations may arise in which patients’ and/or their families’ preferences for medical care conflict with the physician’s treatment plan, physicians are not ethically obligated to continue treatments they consider medically unnecessary. ¹⁶ Failing to address GOC may result in a mismatch between the treatments provided and the patient’s preferences, potentially leading to unnecessary interventions. Furthermore, treatments that do not align with the patient’s actual goals may increase patient dissatisfaction along with increased healthcare costs from futile care. ¹⁷ GOC holds the potential to enhance patient satisfaction by aligning care with ethical principles, particularly those related to patient autonomy, while concurrently contributing to the reduction of healthcare costs. ¹⁸

Conversations regarding GOC and ACP vary widely across the world in terms of their integration into clinical practice and public acceptance. This article compares the global state of GOC and ACP conversations with Nepal’s current practices and explores the need for a standardized framework to support patient-centered approach to EOLC discussions in Nepal.

Global situation in terms of GOC discussion

In the past, discussions about terminal illness diagnoses were infrequent, and conversations regarding GOC were almost nonexistent. A survey of the doctors in the United States in the early 1960s revealed that only 10% of healthcare professionals (HCPs) discussed cancer diagnoses with their patients. ¹⁹ However, this percentage dramatically increased to 97% two decades later. ²⁰ Currently, there is a global trend showing an increase in discussions related to ACP and GOC, especially among those with serious illnesses or chronic conditions. Medicare in the United States has made efforts to reimburse HCPs who engage in ACP discussions with patients. ²¹ Fifteen out of nearly 28 European Union nations have their specific rules on AD. ²² Belgium and the Netherlands prioritize patient autonomy in their legal formulations concerning EOLC and have well-established palliative care systems. ²³ The Centers for Disease Control and Prevention (CDC), time and again, conducts surveys and collects data on EOLC discussions from healthcare centers.^24,25

Even though terminal diagnoses are now more openly addressed, there remains a need to further emphasize and normalize discussions about GOC. Despite HCPs acknowledging the significance of these discussions, there’s a gap in translating this awareness into practice. For instance, a 2006 United Kingdom survey found that 80% of surgeons recognized the necessity of GOC discussions before surgery, yet only 34% actually engaged in these conversations. ²⁶ The condition in Asian countries is even more challenging due to low awareness of ACP among HCPs. A study by Martina et al. revealed that only 20% of HCPs in Sri Lanka have heard about AD and only half in Hong Kong and South Korea understood their meaning. ²⁷ Even when the HCPs are aware, they often face difficulties in addressing ACP due to cultural norms favoring life-prolonging measures, concerns about legal consequences and inadequate institutional support. ²⁸

The Asian patient population is heavily influenced by family dynamics and cultural practices. Martina et al. emphasized the family’s role in ACP, particularly in Asia, where family voices often outweigh those of patients, especially when patients lose decision-making capacity and have expressed divergent wishes for future care compared to their family members. ²⁷ The emphasis on family harmony, a crucial aspect in collectivist cultures like those in Asia, contributes to this approach.^27,29 However, the study noted that patient involvement in ACP is less valued in certain Asian countries, including China, India, Pakistan, and Thailand. ²⁷ While India legally validated AD in 2018, practical implementation only began in January 2023. ³⁰ A survey in 2018–2019 among highly educated graduates in India revealed that less than 30% were aware of AD and within the medical community, only 63% had heard of AD. ³¹ This is concerning, especially considering that the highly educated group, which represented only 6.92% of the total population of India, had a low awareness rate, with nearly half of HCPs remaining unaware of this important aspect. ³¹

While the awareness and acceptance of ACP are growing globally, cultural variations influence how this planning is implemented. As noted in a study by Martina et al., HCPs in China followed a do-not-resuscitate (DNR) orders only 42% of the time. ²⁷ Similarly, a study by Lee et al., involving Korean medical professionals, found that 52.6% of HCPs who were doctors discussed ADs with terminally ill patients less than one-quarter of the time, indicating limited utilization of ADs despite their implementation. ²⁸ The gap between awareness and practical implementation, along with cultural and legal considerations, contributes to the varied adoption of ACP across different regions.

Situation in Nepal

As a lower-middle-income country, Nepal faces significant challenges in accessing adequate healthcare. Despite the introduction of health insurance by the government of Nepal, its effectiveness has been limited due to implementation hurdles. ³² As a result, many Nepalese still grapple with substantial out-of-pocket expenses when confronted with major illnesses. ¹⁴ The cost of yearly health insurance premiums adds to the financial strain, impeding healthcare accessibility for a majority of families in Nepal. ³³

As a developing country, a substantial proportion of the country’s healthcare expenditure is directed toward the elderly population. ³⁴ A study by Acharya et al. revealed a concerning finding: nearly one-third of patients admitted to Patan Hospital, a leading tertiary care center in the Kathmandu Valley, required palliative care. ³⁵ This study highlighted the fact that a significant portion of a tertiary hospital’s resources are utilized to provide symptomatic care for patients with a limited life expectancy. This observation is particularly concerning in the context of Nepal, where the number of tertiary care hospitals available to serve the entire population is limited. ³⁶

The concept of palliative care and EOLC was introduced in the late 20th century, and Nepal has made significant progress in the field of palliative care.^37,38 In 2000, Hospice Nepal was established, serving as the pioneering modern hospice center.^38,39 Several other hospice organizations like Sattighatta Hospice, Sonja Kill Memorial Hospice, Nava Kiran Plus, and the Blue Diamond Society have also been established, which not only provide hospice to cancer patients but have also extended their services to patients with HIV/AIDS, spinal injuries, and survivors of human trafficking.^38,40 Additionally, religious hospices like Pashupatinath Hospice and Shechen Monastery at Bouddha also contribute to providing palliative care to patients in need.^37,38

Despite remarkable progress, much of the Nepalese population remains unaware of the benefits of palliative care services due to a significant communication gap between patients and HCPs.^38,41 GOC discussions are not often done, even for patients in palliative care settings. ⁴² A study done by Gongal et al. revealed that 63% of hospice care patients were unaware of the seriousness of their illness, yet 80% desired knowledge about their disease status, even if terminal. ⁴³ This study portrays the realistic picture of patients receiving palliative care services, which are mostly located in the capital city, Kathmandu. The condition of palliative care services in rural areas is even more concerning. In 2018, Gongal et al. conducted a study in a mountainous district of Nepal and found that a substantial number of patients with terminal illness were grappling with pain and suffering, unaware of their diagnosis and prognosis, and wishing for euthanasia. ⁴² Limited knowledge about care goals compelled midlevel health workers to refrain from discussing terminal prognosis, as they had a fear of patients having unexpected responses that could trigger “heart attack”, causing earlier death. These scenarios equate to patients perceiving their suffering as punishment, which could have been prevented if an effective GOC discussion had been done at the time of diagnosis. ⁴²

The absence of palliative care education in most medical schools is the likely root of this issue, leaving a vast number of physicians unaware of the early benefits of setting care goals.^41,44 Knowledge of palliative care helps distinguish patients who require palliative care from those who may actually benefit from aggressive medical therapy. Patients in Nepal are seldom proactive in EOLC decision-making, as demonstrated by a study by Hari et al., in which only one in seven patients wished to participate in EOLC decisions. The study also reported that while two-thirds of patients sought information about their diagnosis, only half wanted to know their prognosis. ⁴⁵

As individuals approach the end of life, there is a common desire among the Nepalese population to return to their home and be surrounded by their loved ones. ⁴⁶ To enhance the acceptance of palliative care, it is crucial to provide patients with the option of living comfortably at home in a respectful manner. Additionally, home health care or home hospice is a relatively new concept in Nepal and has been started only in select cities. Home hospice aligns with the fundamental principle of staying with family, making it more culturally acceptable in the Nepalese community. ⁴⁷ In the absence of cost-effective government-run home hospice, affording the services of private HCPs for home care is prohibitively expensive. ³⁸ Therefore, most people depend on their family members for healthcare support. Family members often make decisions on behalf of the patient, prioritizing aggressive medical interventions despite financial constraints. ⁴³ This puts unnecessary emotional and financial pressure on the family members.

On a different note, it is important to acknowledge the ongoing shift toward nuclear families in Nepal. ⁴⁸ Based on a study done by Ghimire et al., the elderly population of Nepal seems to be more satisfied with the joint family as compared to the nuclear family. ⁴⁹ However, further exploration of these changing family structures and their impact on EOLC is essential for a comprehensive understanding of the evolving dynamics in Nepalese society.

Way forward to integrate GOC discussion in health care in Nepal

This article highlights the urgent need for a structured approach to GOC and ACP within the healthcare system of Nepal. Integrating GOC discussions is imperative not only from a clinical perspective but also in recognition of the significant contributions made by the country’s geriatric population to the national economy. As a nation, it becomes our responsibility to address the unique health needs of this demographic group. This article aims to raise awareness among HCPs, policymakers, and educators about the substantial gaps in EOLC, largely driven by a lack of awareness, limited training, and inadequate infrastructure.

Before the nationwide implementation of mandatory GOC discussions, it is crucial to acknowledge the disparities in Nepal’s healthcare services, as most palliative and hospice centers are concentrated in urban areas. ³⁸ Efforts to initiate these conversations among the Nepalese population require addressing challenges in palliative care, including the provision of basic palliative care medicines and resources, particularly in remote regions. To facilitate these conversations effectively, HCPs should have a strong command of palliative care and a thorough understanding of the significance of GOC discussions and the benefits of ACP.

This article calls on the scientific community to conduct a prevalence study to gather precise data on knowledge, attitude, and practice regarding GOC and ACP among HCPs. We also aim to draw the attention of medical curriculum boards to the critical need for incorporating palliative care education into medical school curricula, recognizing that early exposure will shape the attitudes and competencies of future HCPs nationwide.

It is also necessary that the concept of GOC be understood by patients and their surrogates so that they can decide between medical interventions and palliative care and opt accordingly. A critical step in advancing GOC discussions is to emphasize the importance of clear documentation in healthcare facilities. If a patient desires family involvement in decision-making, these preferences should be discussed and documented. Additionally, it is important to conduct GOC discussions in separate visits dedicated explicitly to such matters, distinct from visits focused on primary health concerns. In the hospital setting, initiating GOC discussions during admission allows for private conversations with patients, fostering a better understanding of their preferences and values. Cultivating a routine of inquiring about GOC on every admission is key, and documenting these discussions ensures continuity of care.

To facilitate nationwide access to GOC information and documentation, establishing a centralized record system is imperative. When issuing geriatric identity cards, detailed inquiries about AD and code status, including options like “do not resuscitate/do not intubate (DNR/DNI),” can be integrated. This approach helps prime individuals about the importance of GOC discussions in their lives. This would further enable any healthcare facility across the country to retrieve GOC information by entering the patient’s identifier number. This not only enhances continuity of care but also ensures that HCPs are well informed about patients’ preferences, contributing to a more patient-centered and compassionate healthcare system.

This article also advocates for policy reforms to create comprehensive EOLC plans, particularly for patients with chronic diseases or terminal illnesses who may qualify for hospice care. We also advocate for the provision of insurance coverage or government support for patients admitted to hospice care facilities. In addition, home hospice, being culturally acceptable, should be promoted at the government level in a cost-effective manner. ⁵⁰

In conclusion, by enhancing professional training, standardizing documentation, expanding public awareness, and developing centralized systems to record and honor patient preferences, Nepal can move toward a more compassionate, equitable, and patient-centered EOLC framework. Through these efforts, patients and their families will be better equipped to make dignified, informed decisions at the end of life, ensuring that their healthcare needs and preferences are prioritized and respected throughout the continuum of care.