End-of-Life Care Preferences of Terminally Ill Patients: A Cross-Sectional Study

INTRODUCTION

India, with its population of 1.2 billion, faces a significant challenge with numerous individuals suffering from life-limiting illnesses. Only about 1% of its people have access to pain management and palliative care. The ‘Quality of Death’ index evaluates end-of-life (EOL) care across 40 nations, revealing that inadequate access to pain relief, insufficient national palliative care and cultural stigmas hinder the provision of an acceptable quality of death, which in turn affects the overall quality of life at the EOL. India is ranked at the bottom of the Quality of Death Index overall and performs poorly on various other metrics. Moreover, there is a general lack of awareness regarding hospice care in India, which contributes to this low ranking. There are numerous obstacles that not only encompass elements such as population density, poverty, geographic concentration, strict opioid prescribing policies and basic workforce development but also include inadequate national palliative care policy and insufficient institutional engagement in palliative care. Nonetheless, there has been consistent advancement in recent years via community-managed palliative care services. The South Indian state of Kerala, home to 3% of India’s population, is notable for its success in providing palliative care coverage. In recent years, notable changes occurred at the national level, such as the establishment of a national programme for palliative care and the parliament’s amendments to India’s complex Narcotic Drugs and Psychotropic Substances Act, which addressed numerous legal obstacles to opioid access. At first, the World Health Organisation (WHO) and now the Indian Association of Palliative Care have assumed the task of promoting palliative care in India, yet we still have a considerable distance to cover.^[1] EOL care addresses physical, psychological, social and cultural dimensions. Preferences regarding care for serious illnesses among individuals influence both the processes and outcomes of such care. Processes can encompass the administration of pain relief medications, the types of interventions that are pursued, the desired level of understanding about the condition and the extent of family participation in care decisions. Outcomes can include the objectives of treatment; adherence to prescribed treatment protocols; the extent of physical, mental and emotional burdens that patients and their families are willing to accept; considerations regarding do-not-resuscitate orders; other methods of advance care planning and ultimately, the timing, procedure and setting of death.^[2] Studies highlight cultural differences in terms of EOL care preferences^[3] and sensitivity to these cultural factors is essential in providing high-quality EOL care. Research studies have highlighted the benefits of translating EOL care preferences into actual care.^[4-7] In India, patients come from varied backgrounds. Their EOL needs/preferences differ according to their belief systems and values relating to life and death in general. Moreover, cultural variations in attitudes and values have important practical implications for individuals making crucial medical decisions. Culture plays a vital role in EOL decision-making, and there is a dearth of research exploring EOL care preferences for the Indian population.

MATERIALS AND METHODS

A descriptive cross-sectional design, a type of non-experimental research, was utilised in this study. It involved 120 terminally ill cancer patients from a hospice in Tamil Nadu. The samples were selected purposively using the following sampling criteria. Inclusion Criteria: Terminally ill patients who were inpatients during the study period in the hospice, with a survival rate of <1 year, above 20 years of age of both gender, with an advanced cancer of any system. Exclusion Criteria: Terminally ill patients who were critically ill or haemodynamically unstable, unconscious, semi-conscious or disoriented, not able to communicate fluently, not able to understand English or Tamil, not willing to participate, cognitively impaired and hearing impaired. The research tool comprised of three sections: Structured questionnaire on sociodemographic variables, clinical variables and a semi-structured questionnaire to elicit EOL care preferences which consisted of seven sub-sections, namely EOL communication preference, treatment options, death, decision making, spirituality, living wills, euthanasia and it had 25 questions, out of which 14 were dichotomous questions and 10 were multiple choice questions. The response to each of the question was interpreted individually. The tools were content validated by a panel of experts. Further, the tool was translated from English to Tamil, and translation validity was established before using it with the samples, and a pilot study was conducted to ensure feasibility. Ethical clearance was obtained from the institutional ethical committee, and formal permission was obtained from the hospice administrators. The investigator underwent training in counselling psychology and palliative care to better understand the patients’ issues. Patients were recruited purposively after screening for eligibility and written informed consent was obtained. Patients were assured of confidentiality and the right to withdraw from the study was explained. Data were collected through individual interviews, which took place in patient cubicles or in the hospice garden, ensuring minimal inconvenience to patients. Each interview lasted approximately 45 min–1 hour. Post-interview, the patients were thanked for their participation. Frequency and percentages were calculated to describe the demographic variables, clinical variables and EOL care preferences of the terminally ill patients.

RESULTS

The study sample of terminally ill patients was evenly split by gender, with a quarter aged 21–40. Most were married (74.16%), literate (75.82%), employed (74%) and Hindu (78.33%). About half earned Rs 10,000–15,000. Most were from nuclear families (86.66%) and had social support (74.16%). Clinically, half had <6 months to live, 58% were diagnosed within the past year, and treatments included radiation (73.33%), surgery (7.5%) and chemotherapy (45.83%).

Table 1 portrays that most terminally ill patients (69.16%) had not communicated their EOL preferences; 16.66% told family, 9.16% told health care professionals (HCPs), and 5% told friends. Figure 1 shows a nearly equal preference for family members (48.33%) and HCPs (44.16%) to initiate EOL care discussions, with few preferring clergy (2.5%) or friends (1%).

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Figure 1:

Distribution of terminally ill patients based on preferred person for end-of-life (EOL) communication.

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Figure 2 portrays that most patients preferred pain control (82.5%) and artificial hydration (56.66%), but rejected cardio pulmonary resuscitation (CPR), ventilators (72.5%) and trying the latest treatments (74.16%).

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Figure 2:

Distribution of terminally ill patients based on preference for EOL treatment options.

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In Figure 3, 40.83% preferred home care, 34.16% preferred hospice, 19.16% preferred hospitals and 5.83% preferred religious centres for EOL care.

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Figure 3:

Distribution of terminally ill patients based on their preference for EOL care.

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Figure 4 shows that 77.5% preferred to die at home, 10.83% in a hospital, 7.5% in hospice, 2.5% in a religious centre and 1.66% had no preference.

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Figure 4:

Distribution of terminally ill patients based on the preferred place of death.

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Table 2 depicts that 91.66% preferred early death over suffering, 88.33% opposed artificial life prolongation, and the group was split on sharing death fears (49.16% vs. 50.83%). Figure 5 shows that 60% preferred family at death, 11.66% preferred HCPs and 26.66% preferred to die alone.

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Figure 5:

Distribution of terminally ill patients based on the preferred person at the time of death.

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Table 3 illustrates that when cognitively intact, 43.33% preferred HCPs and self for EOL decisions, 19.16% preferred self and 20.83% preferred HCPs. When impaired, 46.66% preferred HCPs, 33.33% preferred HCPs and family and 19.16% preferred family.

Table 4 shows that 73.33% preferred integrating spiritual beliefs into EOL care. Top preferences: religious songs (65%), reading holy books (47.5%), clergy visits (31.66%) and religious rituals (28.33%).

Figure 6 shows comparable attitudes towards euthanasia and physician-assisted suicide (PAS), with 40.83% and 37.5%, respectively, agreeing on legalisation. Similar numbers disagreed (32.5% for euthanasia, 33.33% for PAS), whereas a quarter remained neutral. Furthermore, the study revealed that 71.66% preferred to write a living will for their loved ones/HCPs to know about their EOL care preferences.

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Figure 6:

Distribution of terminally ill patients based on their attitude towards euthanasia and physician-assisted suicide.

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DISCUSSION

The majority (69.16%) of terminally ill patients had not discussed EOL preferences; 16.66% had discussed with family. Family (48.33%) and healthcare professionals (44.16%) were preferred initiators. This highlights taboos surrounding death discussions in India and trust in family and medical systems for EOL care decisions. In the current study, 82.5% of patients preferred pain control medication, even if it left them muddled. Most did not want CPR (72.5%), ventilators (72.5%) or the latest treatments (74.16%). These preferences align with other studies where the majority rejected CPR and ventilators.^[8-10] However, preferences for artificial nutrition varied. EOL discussions allow patients to set their medical care goals. Chan et al. found that EOL discussions led to reduced aggressive interventions and earlier hospice enrolment.^[11]

The study found that most terminally ill patients preferred EOL care at home (40.83%) or in hospice (34.16%). A majority (77.5%) preferred to die at home, with 91.66% favouring an early death over prolonged suffering and 88.33% rejecting artificial life prolongation. Preferences varied on discussing death fears, with 60% wanting family present at death and 26.6% preferring to die alone. These findings align with studies on various cultural groups^[12,13] and highlight the need for enhanced home-based palliative care, reflecting the deep family-centred nature of Indian culture.

Nearly 45% of the patients wanted to make the EOL decisions along with healthcare professionals when they are mentally competent. This finding clearly parallels with the self-esteem dimension on the hierarchy of the dying person’s needs.^[14] When the cognition is impaired, they prefer HCPs and family members to make the EOL decisions.

Spirituality is crucial in terminally ill care, with 39.16% of patients preferring family discussions on spiritual needs and 19.16% opting for healthcare professionals. Most (73.33%) wished to integrate their spiritual beliefs into EOL care. Preferred spiritual support included listening to religious songs (65%), reading holy books (47.5%), clergy visits (31.66%) and religious rituals (28.33%). Cancer patients often use spiritual coping methods^[15,16] when other methods fail. Many believe physicians should enquire about religious beliefs in grave illness, and qualitative studies^[17] have shown that spirituality and spiritual practices create a framework for defining and fostering hope. Indian culture’s deep spiritual roots necessitate incorporating spiritual care into palliative care education programmes.

Even though there is no Patient Self-Determination Act in India, surprisingly, 71.66% of the patients preferred to complete an advance directive if it was available. In quality EOL care, care is tailored to match the patient’s clinical circumstances and preferences. Advance directives are one way to formally specify surrogate decision-makers and preferences. Prior research studies^[4-6] highlight the benefits of translating EOL care preferences into care, and the findings of the current study point to the need for enacting laws related to patient self-determination. More or less a similar attitude prevailed among the terminally ill patients, with 40.83% and 37.5% agreeing for euthanasia and PAS to be made legally available, while 26.66% and 29.16% of them remained neutral towards euthanasia and PAS, respectively. A major development took place on 7^th March 2011, where the Supreme Court of India passed a landmark judgement allowing passive euthanasia.^[18] There’s still much progress to be made in this area, but what should always remain constant is our dedication to welcoming our terminally ill patients with compassion and understanding, along with a readiness to accompany them through whatever pain they might experience.

Because of demographic and disease transition, there is a dire need for improvement in EOL care. Despite this need, there is a lack of awareness of quality EOL care among healthcare professionals, including nurses. Training the practising nurses in EOL care would ensure the provision of optimal EOL care, the outcome of which would be ‘good death’ for the patients. According to Matzo, the EOL Nursing Education Consortium emphasises how decisions regarding palliative care are influenced by factors such as age, gender, sexual orientation, ethnicity and spirituality.^[19] When nurses and other healthcare professionals receive thorough training on cultural concerns in EOL care, patients receive better care and eventually pass away in a dignified, peaceful manner that is sensitive to their cultural requirements and expectations. Indian culture is intertwined with spiritual beliefs, and needs integration of spiritual care into EOL care. Professionals have little or no training on how to deal with this aspect, especially in the EOL. Palliative care education programmes should have sufficient training inputs on cultural aspects, spiritual aspects and inclusion of family in every aspect of decision-making and care, which will ensure quality EOL care. Quality EOL care is the need of the hour, The Indian Nursing Council can collaborate with the Government of India, WHO and Palliative Care Organisations to design and implement a program called ‘Training of Nurses on End-of-Life Care’ at the National level like Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM).

CONCLUSION

This pioneering study on EOL care preferences among the Indian population underscores the importance of cultural sensitivity in health care. It reveals diverse beliefs and approaches to EOL care, emphasising respect for cultural values in patient decision-making. Comprehensive education on cultural considerations, as advocated by the EOL Nursing Education Consortium, enhances care quality. Recognising cultural and religious practices around death aids in delivering culturally appropriate palliative care amidst increasing globalisation. Despite a modest enhancement in the accessibility of palliative care services in India, significant challenges remain. Continuous efforts are needed to enhance awareness, improve access to essential medications and develop infrastructure to ensure that all individuals in need can receive quality EOL care.