A survey of the domiciliary situation of urban and rural patients of a palliative care unit in south India
Aim: A demographic study was conducted to understand the social status of the urban and rural patients attending a palliative care unit in South India.
Keywords: Home care, India, palliative care, social status
It is important to have an understanding of the social status and living conditions of patients receiving palliative care in order to administer care appropriately. Medical personnel and facilities are scarce in India, with only 34% physicians and 25% hospital beds located in rural areas. 
The rural population of India is 742,617,704 and the urban population is 286,119,689. The rural and urban population in Tamil Nadu is 34,921,681 and 27,483,998, respectively (2001 census). 
The per capita income in Tamil Nadu is Rs 20,975/-  and 21.1 million live below the poverty line. This study was undertaken to assess the social situation and living conditions of urban and rural patients attending palliative care services.
Subjects were chosen by sequential attendance to the Palliative Care Clinic of the Christian Medical College and Hospital (CMCH), Vellore, India, between June 2005 and May 2006, limited to those residing within a 50-km radius. After obtaining consent, structured interviews and observations of palliative care patients were conducted during home visits and information was recorded in a survey format. The social and demographic parameters are summarized in [Table 1].
The study population comprised of 50 urban and 50 rural patients (49 male and 51 female) who were visited at home [Table 1]. The rural and urban population of Vellore district is 2,169,319 and 1,307,998, respectively.  The gender ratio in Tamil Nadu is 987 and that of India is 933, according to the 2001 census. 
Seventy percent of the people receiving palliative care were less than 60 years of age and the majority were unskilled laborers or housewives. Only 3% had been educated beyond high school. Younger patients and the economically well off were more likely to be better educated [Figure 1],[Figure 2],[Figure 3],[Figure 4],[Figure 5],[Figure 6],[Figure 7], [Table 2].
Eighty percent were Hindus and about 57% of them resided in villages as compared with the majority of Christian and Muslim patients who were in urban areas. Eighty percent of Indians and 88% of the population in Tamil Nadu are Hindus.  Christians and Muslims comprise 2% and 13% of the population in India and 6% and 5% of the population in Tamil Nadu, respectively. ,
Forty-seven percent lived in joint families, the majority in small houses with one or two rooms and minimal facilities. Over half the houses had no toilets and residents used the open fields. Fifty-one percent did not have a source of water supply within the house although 95% had an electrical connection. Fifty percent of the patients slept on the floor [Table 1].
The following parameters were found to be significantly different between the urban and rural patients: occupation, religion, caste, housing, electricity, toilet, number of buses to the nearest hospital, distance to the hospital and the palliative care clinic [Table 1].
Economic status was a strong predictor of sleeping place and education of the patients. Education was additionally predicted by gender and age, where age was the most significant predictor ([Table 3], multivariate analysis).
Sixty-five percent of the male patients and thirty-five percent of the female patients were the main decision-makers in the family. The male patients had their spouse as the main caregiver in 89.5% in contrast to women patients for whom the daughters were the caregivers in 70% [Figure 8].
Rural patients had to travel a greater distance to the hospital than urban patients. The majority of the patients had a bus stand within 1 km of their residence. In urban areas, the closest health provider was a private clinic but these were fewer in rural areas, where primary health centers were the closest health care facility.
This survey was conducted to study the social situation of rural and urban patients attending the palliative care services of CMCH. In Tamil Nadu, the rural population constitutes 55.95% of the total population. 
A clear finding from the survey was that poverty was a significant problem in a large proportion of the patients attending the palliative care clinic. In Tamil Nadu, 21.1 million people are below the poverty line and the projected poverty ratio by 2011-2012 for Tamil Nadu and India is 3.59 and 4.37, respectively.  It is noteworthy that there were no rich patients below 40 years of age attending the palliative care clinic possibly because the rich young were on active anticancer therapy. Poverty was reflected in the poor housing facilities, lack of access to toilets and water, non-availability of beds and limited education. The majority of the poor patients (69%) use open spaces for toilet purposes, 68% use water from a common source and 67% sleep on the floor. Poverty was a more significant predictor of education and housing facilities than the rural urban divide.
The factors predicting higher educational levels were younger age, male gender and better economic status ([Table 3], multivariate analysis). It was encouraging that younger patients had better education, indicating better access to education and improvement in the education status over time. In Tamil Nadu, literacy rates for males are 77.47% and 88.4% and for females 55.84% and 75.64% in rural and urban areas, respectively. 
Gender continues to play a significant role. Although women were the main caregivers, they were rarely the main decisionmakers. Ninety percent of men were cared for by their wives but only 10% of women had their husbands as their primary caregivers. Daughters (70%), not daughters-in-law, were the main caregivers for women. Palliative care services should provide women with information and training in home care.
A few encouraging trends were the higher educational levels in the younger age group and the near-universal availability of electricity.
This study has various limitations. The sample represents only patients attending a particular hospital and within a radius of 50 km. Nevertheless, it highlights the need for palliative care providers to be aware of the deprived circumstances from which many patients come. Providing homecare for patients who do not have sufficient space at home, no toilets, no beds, difficulties with access to water and toilet is challenging. Recommendations need to be tailored to the living condition of the patient through subsidized medication, simple nursing techniques, empowering and informing the primary caregivers. Additionally, services should explore options for income generating activities for the bereaved family and aim for better awareness and coverage.
[Figure 1], [Figure 2], [Figure 3], [Figure 4], [Figure 5], [Figure 6], [Figure 7], [Figure 8]
[Table 1], [Table 2], [Table 3]