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Original Article
17 (
1
); 24-32
doi:
10.4103/0973-1075.78446

Impact of Pain and Palliative Care Services on Patients

Post Graduate Department of Commerce and Research Centre, St. Peter’s College, Kolenchery, Ernakulam Dist., Kerala, India
Address for correspondence: Dr. Santha S; E-mail: saraswathysantha@yahoo.com
Licence

This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Disclaimer:
This article was originally published by Medknow Publications and was migrated to Scientific Scholar after the change of Publisher; therefore Scientific Scholar has no control over the quality or content of this article.

Source of Support: Nil

Conflict of Interest: None declared.

Abstract

Background:

Palliative care has become an emerging need of the day as the existing health-care facilities play only a limited role in the care of the chronically ill in the society. Patients with terminal illness in most cases spend their lives in the community among their family and neighbors, so there is the need for a multi disciplinary team for their constant care. Volunteers are primary care givers who originate normally from the same locality with local knowledge and good public contact through which they can make significant contributions in a team work by bridging the gap between the patient community and outside world.

Aim:

The present study has been undertaken to analyze the impact of palliative care services on patients by considering 51 variables.

Materials and Methods:

The respondents of the study include 50 pain and palliative care patients selected at random from 15 palliative care units functioning in Ernakulam district. The analysis was made by using statistical techniques viz. weighted average method, Chi-square test, Friedman repeated measures analysis of variance on ranks and percentages.

Results:

The study revealed that the major benefit of palliative care to the patients is the reduction of pain to a considerable extent, which was unbearable for them earlier. Second, the hope of patients could be maintained or strengthened through palliative care treatment.

Conclusion:

It is understood that the services of the doctors and nurses are to be improved further by making available their services to all the palliative care patients in a uniform manner.

Keywords

Friedman repeated measures analysis of variance on ranks
Hospice
Neighborhood network in palliative care
Palliative care
PPC units

INTRODUCTION

Palliative care is a holistic care which fulfills the requirements of chronically ill patients. Those who need continued supportive care spend their lives not in the hospital, but in the community among their family and neighbors. Hence, the community has a major role in the care of these individuals. Yuen et al.,[1] in their study “Palliative care at home: general practitioners working with palliative care teams” stated that home care was the preferred option for most people with a terminal illness, and providing home care relies on good community-based services, a general practice workforce competent in palliative care practice, and willing to accommodate patients’ need. Devi, et al.,[2] in a study, “Setting up home-based palliative care in countries with limited resources: a model from Sarawak, Malaysia,”, described the set up of a home-care program in Sarawak (the Malaysian part of the Borneo Island), where half the population lives in villages that are difficult to access. The program had been sustainable and cost efficient, serving 936 patients in 2006. The results showed that pain medication could be provided even in remote areas with effective organization and empowerment of nurses, who were the most important determinants for the set up of this program. Zerzan et al.,[3] in their study, “ Access to Palliative Care and Hospice in Nursing Homes”, stated that hospice improves end-of-life care for dying nursing home residents by improving pain control, reducing hospitalization, and reducing use of tube feeding, but it is rarely used. Hospice use varies by region, and rates of use are associated with nursing home administrators’ attitudes toward hospice and contractual obligations.

Data show that 80% of all palliative care services in the country are delivered in Kerala, reaching 30% of the needy patients, whereas these services reach only to 2% in India. Kerala’s attempts at caring for terminally ill patients have been regarded as a model for the rest of the world. Kerala Government is the only State Government in Asia which has introduced a palliative care policy in the State for the first time. The Neighborhood Network in Palliative Care (NNPC) is a volunteer-driven movement that has gained momentum in Kerala, especially in Malabar Region, where the volunteers are the arms of the community, supporting the patient in collaboration with governmental and nongovernmental agencies in Kerala.

Significance of the study

Palliative care is a prerequisite for a complete medical care. It provides the best care to the patients and their families. In India, the present medical and hospice systems do not have the capacity to guarantee quality of life for the majority of people with life-limiting illnesses or for their care givers and survivors, which focuses upon the identification and control of observable and predictable physical symptoms. The existing healthcare facilities are more attuned to caring for acute health problems and they play only a limited role in the care of the chronically ill in the society. Patients with terminal illness need a multidisciplinary team and constant care. This has lead to a mounting need for palliative care.

Pain and palliative care units (hereafter referred as PPC Units) are committed to being responsible centers of the communities where they operate by making a visible impact on billions of lives across the world with their renowned products. They also touch the lives of those who are in need of care and attention. In Kerala, the tremendous developments made in palliative care in the State have made the end-of-life phase of the terminally ill more bearable. Palliative care remains the only and indeed the most appropriate form of treatment for the patients presenting at incurable stages. There is a need to advocate adequate policy development and effective program implementation in the area of palliative care. Moreover, the review of earlier literature revealed that most of the studies in palliative care have been conducted in the field of medical science. No study has so far been conducted for analyzing the impact of palliative care services on patients. In this context, the present topic entitled “Impact of Pain and Palliative Care Services on Patients” assumes greater importance.

Scope of the study

The present study has been undertaken to analyze the impact of palliative care services on the patients availing such services. The assessment has been made by considering the perception of patients in Kerala. However, the focus of the study is the palliative care patients of Ernakulam District, Kerala.

Objective of the study

The main objective of the study is to know the impact of palliative care services on the patients availing such services in Kerala.

Hypothesis of the study

HO1There is no difference in the level of satisfaction among the PPC patients with regard to services of medical professionals in Kerala.

Selection of sample

The PPC patients have been selected from the data base maintained by the PPC units of the Ernakulam district, Kerala State. There are in all 22 PPC units functioning in Ernakulam district as on July 31, 2009. Only 15 units in Ernakulam are offering home care services. Convenience sampling method was adopted for selection of sample. A sample of 50 patients (of 2000 patients) was selected from these 15 units for the purpose of study.

Collection of data

The data required for the study were collected from both primary and secondary sources. The primary data were collected from the respondents based on structured questionnaire. The secondary data were collected from reports, books, and journals published by the consortium of PPC Units in Ernakulam District, Institute of Palliative Medicine, and from various web sites.

Tools of analysis

For the purpose of analysis, statistical tools like averages, percentages, rank test, and Friedman repeated measures analysis of variance on ranks were used. To study the level of satisfaction in the palliative care services among patients in Kerala, the relevant questions were asked in five point scale with the following options: highly satisfied, satisfied, not satisfied, dissatisfied, and no opinion. These questions were scored in the order of magnitude from 5 to 1. Overall score of each respondent was found out, which form the basis for comparison. The Friedman repeated measures analysis of variance on ranks (nonparametric test) was used to compare the effects of a series of different experimental treatments on a single group. Each subject’s responses were ranked from smallest to largest without regard to other subjects, and then the rank sums for the treatments were compared.

Period of the study

The study covers a period of six months, that is, from July 2009 to January 2010.

Impact of palliative care service – Analysis

For analyzing the impact of PPC services on patients, 51 variables have been considered. The study revealed that the majority of the patients (52%) under palliative care treatment were men in the age group of above 60 years. It is understood that in Ernakulam District, palliative care is mainly provided to cancer patients because 50% of the beneficiaries of palliative care services are cancer patients. Table 1 reveals that the major physical problem of the patients is pain and the problem of incontinence is ranked as second. The Friedman Chi-square test result [Table 2] revealed that there is significant difference in the type of physical problems faced by the patients of different age groups (Chi-square = 345.495 with 22 d.f.at 1% level). Most of the patients are not able to stay in their job and their children could not continue their schooling because of their illnesses which they ranked as the major social problem, and they also have fear on account of illness [Table 3]. Huge medical expenditure is the major financial problem faced by the patients, followed by intractable debt which is ranked as second [Table 4]. The major medical care provided by the doctors is prescribing medicines. They also help the patients to reduce their sufferings through touch and closeness [Table 5]. Most of the patients, irrespective of their age, are either highly satisfied or satisfied with the services of the doctors [Table 6]. Chi-square test result [Table 6] revealed that there is no significant relationship between the age of the patients and their level of satisfaction in the services of the doctors (Chi-square = 1.531 with 1d.f. at 5% level). The major service provided by the nurses is attending to the bed sore of the patients. They also give medicines to the patients as per the directions of the doctors, which is ranked as second by the patients [Table 7]. It is revealed that all the patients in the age group of 20 to 40 years are highly satisfied and patients in the age group of above 40 years are either highly satisfied or satisfied with the services of nurses [Table 8]. There is no significant relationship between the age of the patients and their level of satisfaction in the services of the nurses (Chi-square = 0.045 with 1 d.f. at 5% level) [Table 8]. The Chi-square test results given in Table 6 and Table 8 revealed that there is no significant difference in the level of satisfaction among the patients with regard to the services of doctors and nurses. Therefore, the null hypothesis (HO1) stating that there is no difference in the level of satisfaction among the PPC patients with regard to services of medical professionals in Kerala stands accepted.

Table 1: Type of physical problems faced by the patients
Physical problem Mean Rank
Pain 21.868 1
Breathlessness 20.538 4
Fatigue 20.550 3
Drowsiness 19.587 6
Insomnia 19.333 8
Dehydration 18.200 17
Constipation 19.133 11
Anorexia 19.830 12
Nausea 17.000 20
Physical losses 18.333 16
Edema 18.857 13
Incontinence 20.929 2
Loss of function 18.000 18
Vomiting 19.833 5
Bed sores 18.833 14
Loss of mobility/dependency 19.250 9
Fumigating wounds 17.500 19
Disfigurement 19.167 10
Difficult to swallow 19.444 7
Itching 18.500 15

Source: Primary data

Table 2: Type of physical problems of patients and age of the patients (Friedman repeated measures analysis of variance on ranks)
Category 20–30
30–40
40–50
50–60
Above 60 years
Mean Rank Mean Rank Mean Rank Mean Rank Mean Rank
Pain 21.0000 2 22.0000 1 21.600 2 21.846 2 22.000 1
Breathlessness 21.0000 2 19.0000 7 21.0000 4 20.778 3
Fatigue 20.0000 3 20.250 6 20.714 5 20.625 4
Drowsiness 19.0000 4 19.0000 7 19.0000 8 20.500 5
Insomnia 17.500 8 19.0000 8 19.727 9
Dehydration 21.0000 2 21.0000 4 21.333 3
Constipation 21.0000 4 19.143 7 18.857 12
Anorexia 20.500 5 18.333 9 19.000 11
Nausea 16.250 14 17.000 14
Physical losses 16.500 10 19.000 8 19.500 10
Edema 18.500 5 0.0000 17.667 12 21.000 2
Incontinence 22.0000 1 21.250 3 22.000 1 20.286 6
Loss of function 20.000 3 16.000 6
Vomiting 22.000 1 22.000 1 18.000 10 19.000 11
Bed sores 18.0000 5 21.000 4 17.667 13
Loss of mobility/dependency 19.000 4 18.500 5 21.000 4 17.750 11 20.000 7
Fumigating wounds 20.000 3 16.500 13 17.667 13
Disfigurement 21.000 2 21.000 4 20.000 6 17.667 13
Difficult to swallow 17.000 9 19.750 8
Itching 16.500 10 20.000 7

Source: Primary data; χ2= 345.495 with 22 degrees of freedom. Significant at 1% level

Table 3: Type of social problems faced by the patients
Type of social problem Mean Rank
Not able to stay in my job/go to school 15.350 1
Social isolation 14.524 3
Not able to fulfill my prior role in the family/society 14.375 4
Sadness 13.350 10
Not able to be active in the society/community 14.318 5
Depression 14.111 7
Not able to keep up friendships 12.000 12
Anger 12.500 11
Anticipatory bereavement 10.167 14
Lack of social safety 14.167 6
Fear 15.125 2
No relatives available for help 13.923 8
Neglect 12.500 11
Change in faith/beliefs 13.714 9
Loss of social roles 11.600 13

Source: Primary data

Table 4: Type of financial problems faced by the patients
Type of financial problems Mean Rank
Poverty due to absence of income earning member 5.231 3
Huge medical expenditure 5.732 1
Children dropped out of school 4.000 5
Intractable debt 5.313 2
Family member gave up work due to illness 4.333 4

Source: Primary data

Table 5: Type of physical care provided by the doctors
Type of physical care Mean Rank
Medicines 4.946 1
Exercises and aids 3.625 4
Touch and closeness 4.000 2
Discussion between me and family members 3.692 3

Source: Primary data

Table 6: Age of the respondents and their level of satisfaction in the present services of the doctors
Age Highly satisfied Satisfied No opinion Total
20–30 1 - 1
30–40 1 1 1 3
40–50 2 5 7
50–60 6 5 2 13
Above 60 years 10 13 3 26
Total 19 25 6 49

Source: Primary data; χ2 = 1.531 with 1 degree of freedom. Not significant at 5% level

Table 7: Type of physical care provided by the nurses
Type of physical care Mean Rank
Bathing 7.0000 3
Attending to the bed sore 8.0000 1
Changing clothes 5.0000 7
Giving medicines 7.7050 2
Dressing the wounds 6.3333 5
Changing the “condom catheter” 6.8700 4
Training the family members in simple nursing tasks 5.8333 6

Source: Primary data

Table 8: Age of the respondents and their level of satisfaction in the present services of the nurses
Age Highly satisfied Satisfied No opinion Total
20-30 1 - - 1
30-40 3 - - 3
40-50 2 4 1 7
50-60 9 4 13
Above 60 years 17 8 1 26
Total 32 16 2 50

Source: Primary data; χ2 = 0.045 with 1 degree of freedom; Not significant at 5% level

“Attending to the bed sore” is the major physical care provided by the volunteers to the patients, which is ranked as first by the patients. Second, volunteers also help the patients to change clothes and give them medicines as prescribed by the doctor [Table 9]. The major psychological care provided by volunteers is chatting with the patients. Volunteers also listen to the sorrows of the patients, which is ranked as second by the patients [Table 10]. The major financial care provided by the volunteers is supply of medicines to the patients at free of cost. Second, they supply rice and provisions to the patient’s family [Table 11]. The major spiritual care provided by the volunteers to the patients is psychological boost [Table 12].

Table 9: Type of physical care provided by the volunteers
Type of physical care provided by the volunteers Mean Rank
Bathing 7.000 4
Attending to the bed sore 7.800 1
Changing clothes 7.500 2
Giving medicines 7.630 3
Dressing the wounds 6.556 7
Changing the “condom catheter” 6.688 5
Training the family members in simple nursing tasks 5.429 8
Others 6.667 6

Source: Primary data

Table 10: Type of psychological care provided by the volunteers
Type of psychological care Mean Rank
Chatting with the patients 4.786 1
Listening the sorrows and fears of patients 3.913 2
Listening to the concerns of the family members 3.400 3
Sharing of problems with patients and the family counselling 3.263 4

Source: Primary data

Table 11: Type of financial care provided by the volunteers
Type of financial care Mean Rank
Supply medicines at free of cost 4.966 1
Supply rice and provisions for the family 4.250 2
Provide wheel chairs/water beds, commodes, etc 4.143 3
Books, clothes, and school fees for the kids 3.000 4

Source: Primary data

Table 12: Type of spiritual care provided by the volunteers
Type of spiritual care Mean Rank
Psychological boost 9.759 1
Helped to establish/re-establish a sense of meaning 8.818 3
Encourage to reminisce with family and friends 7.0000 5
Prepare advance directives 8.778 4
Love and affection 8.917 2

Source: Primary data

All the patients in the age group of 20 to 40 years are highly satisfied with the services of the volunteers. Patients in the age group of above 40 years are either highly satisfied or satisfied with the services of the volunteers [Table 13]. There is no significant relationship between the age of the patients and their level of satisfaction in the services of the volunteers (Chi-square = 0.199 with 1 d.f. at 5% level [Table 13]). 56% of the patients are highly satisfied with the present medicines. Of which, 50% of them are in the age group of above 60 years and 32% of them are in the age group of 50 to 60 years [Table 14]. The majority of the patients in the age group of 40 to 50 years are satisfied with the medicines. Chi-square test result [Table 14] revealed that there is no significant relationship between the age of the patients and their level of satisfaction in the present medicines (Chi-square = 1.469 with 2 d.f. at 5% level).

Table 13: Age of the respondents and their level of satisfaction in the present services of the volunteers
Age Highly satisfied Satisfied No opinion Total
20-30 1 1
30-40 2 2
40-50 2 4 6
50-60 7 1 1 9
Above 60 years 22 3 7 32
Total 34 8 8 50

Source: Primary data; χ2 = 0.199 with 1 degree of freedom. Not significant at 5% level

Table 14: Age of the respondents and their level of satisfaction in the present medicines
Age Highly satisfied Satisfied No opinion Total
20-30 1 1
30-40 2 1 3
40-50 2 4 1 7
50-60 9 4 13
Above 60 years 14 11 1 26
Total 28 20 2 50

Source: Primary data; χ2 = 1.469 with 2 degrees of freedom; Not significant at 5% level

All the patients in the age group of 20 to 40 years are highly satisfied with the present medical treatment [Table 15]. Chi-square test result [Table 15] revealed that there is no significant relationship between the age of the patients and their level of satisfaction in the present medical treatment (Chi-square = 0.142 with 1 d.f. at 5% level). All the patients in the age group of 20 to 40 years are highly satisfied and patients in the age group of above 40 years are either highly satisfied or satisfied with the overall services of the units [Table 16]. Chi-square test result [Table 16] revealed that there is significant relationship between the age of the patients and their level of satisfaction in the overall services of the units (Chi-square = 3.907 with 1 d.f. at 5% level).

60% of the patients in the age group of above 60 years and 23% of the patients in the age group of 50 to 60 years have the opinion that the present services are qualitative and do not require any improvement [Table 17]. 31% of the patients in the age group of below 50 years and 69% of the patients in the age group of above 50 years demand for improvement in the quality of present palliative care services. Chi-square test result [Table 17] revealed that there is no significant difference in the opinion about the improvement in the present care among patients irrespective of their age (Chi-square = 2.973 with 1 d.f. at 5% level).

Table 15: Age of the respondents and their level of satisfaction in the present medical treatment
Age Highly satisfied Satisfied Total
20-30 1 1
30-40 3 3
40-50 2 5 7
50-60 10 3 13
Above 60 years 16 10 26
Total 32 18 50

Source: Primary data; χ2 = 0.142 with 1 degree of freedom; Not significant at 5% level

Table 16: Age of the respondents and their level of satisfaction in the overall services
Age Highly satisfied Satisfied Total
20-30 1 1
30-40 3 3
40-50 5 2 7
50-60 11 2 13
Above 60 years 15 11 26
Total 35 15 50

Source: Primary data; χ2 = 3.907 with1 degree of freedom. Significant at 5% level

Table 17: Age of the respondents and their opinion about improvement in the present care
Age Yes Percentage No Percentage Total Percentage
20-30 1 5 1 2
30-40 1 5 2 7 3 6
40-50 4 21 3 10 7 14
50-60 5 27 7 23 12 24
Above 60 years 8 42 19 60 27 54
Total 19 100 31 100 50 100

Source: Primary data; χ2 = 2.973 with1 degree of freedom. Not significant at 5% level

83% of the patients in the age group of above 50 years and 17% of the patients in the age group of 30 to 50 years do not require any services other than those offered by the units [Table 18]. However, 55% of the patients in the age group of above 50 years and 38% of them in the age group of 20 to 50 years need other services. Chi-square test result [Table 18] revealed that there is no significant relationship between the age of the patients and their need for other services (Chi-square = 1.941 with 1 d.f. at 5% level). 28% of the patients in the age group of above 50 years and 7% of the patients in the age group of 20 to 50 years feel that palliative care is very essential for the society. However, 74% of the patients in the age group of above 50 years and 26% of the patients in the age group of 40 to 50 years feel that these services as essential to the society [Table 19]. Chi-square test result [Table 19] revealed that there is no significant difference in the opinion about the need for PPC services in the society among patients of different age group (Chi-square = 0.549 with 1 d.f. at 5% level).

Table 18: Age of the respondents and their need for other care not provided by the unit
Age Yes Percentage No Percentage Total Percentage
20-30 1 11 1 2
30-40 3 7 3 6
40-50 3 27 4 10 7 14
50-60 4 44 9 22 13 26
Above 60 years 1 11 25 61 26 52
Total 9 100 41 100 50 100

Source: Primary data; χ2 = 1.941 with1 degree of freedom. Not significant at 5% level

Table 19: Age of the respondents and their opinion about the need for PPC services in the society
Age Absolutely essential Percentage Essential Percentage Total Percentage
20-30 1 3 1 2
30-40 3 9 3 6
40-50 3 9 4 26 7 14
50-60 11 30 2 13 13 26
Above 60 years 17 49 9 61 26 52
Total 35 100 15 100 50 100

Source: Primary data; χ2 = 0.549 with1 degree of freedom. Not significant at 5% level

57% of the female patients and 43% of male patients opined that palliative care service is absolutely essential for the society, whereas, 73% of male patients and 27% of female patients feel that these services are essential [Table 20]. Chi-square test result [Table 20] revealed that there is significant difference in the opinion about the necessity of PPC services in the society among the male and female patients (Chi-square = 3.907 with 1 d.f. at 5% level). After undergoing palliative care treatment, the pain suffered by the patients earlier could be reduced to a considerable extent, which they ranked as first. The hope of patients could be maintained or strengthened through palliative care treatment, which was ranked as second by the patients [Table 21]. It is understood that the services of the doctors are to be improved further by making available their services to all the palliative care patients in a uniform manner as and when the patients need it [Table 22]. Similarly, services of the nurses should also be improved, which was ranked as second by the patients.

Table 20: Sex of the respondents and their opinion about the necessity of PPC services in the society
Sex Absolutely essential Percentage Essential Percentage Total Percentage
Male 15 43 11 73 26 52
Female 20 57 4 27 24 48
Total 35 100 15 100 50 100

Source: Primary data; χ2 = 3.907 with1 degree of freedom; Significant at 5% level

Table 21: Type of relief to the patients after undergoing treatment
Type of relief after undergoing treatment Mean Rank
My hope is maintained/strengthened 12.0067 2
Pain is reduced 12.429 1
I feel more comfort 11.800 3
I am relieved from physical/mental suffering 10.571 7
I feel more secure 11.000 6
I feel relaxed 11.758 4
Feeling of independence 11.600 5
A good mental support system to help my family 8.800 11
The quality of my life is improved 9.429 9
I could get tremendous psychological boost 9.867 8
A great financial help to me and my family 9.000 10

Source: Primary data

Table 22: Areas where palliative care services are to be improved
Areas where services are to be improved Mean Rank
Services of the doctors 8.0000 1
Services of the nurses 7.667 2
Services of the volunteers 7.0000 4
Medicines 7.167 3
Increase in the frequency nurse’s visit 5.0000 5
Increase in the frequency of volunteer’s visit 7.0000 4

Source: Primary data

CONCLUSION

In Ernakulam district, the majority of the patients under palliative care treatment are cancer patients in the age group above 60 years. It is revealed that the male patients who need palliative care outnumber the females. Volunteers play a major role in increasing the awareness of palliative care services among the community. After undergoing palliative care treatment, the pain suffered by the patients earlier could be reduced to a considerable extent and the hope of patients could be maintained or strengthened. It is understood that the services of the doctors and the nurses are to be improved further by making available their services to all palliative care patients in a uniform manner as and when the patients need it.

First of all, I thank University Grants Commission for giving me the opportunity to conduct a study on pain and palliative care units in Kerala by providing the necessary financial and other supports. My sincere thanks to Dr. M.R. Rajagopal, Chairman, Pallium India, Thiruvananthapuram and Dr. Suresh Kumar, Director, Institute of Palliative Medicine, Calicut for their valuable advice, suggestions, and support given to me for drafting the questionnaires. I am very much grateful to Dr. Hyder Ali, Managing Director, Anwar Memorial Hospital, Aluva; Mr. Lal, Trainer, Anwar Memorial Hospital, Aluva; and Mr. Radhakrishna Menon, Consortium of Pain and Palliative care Units, Ernakulam District, for their whole-hearted support and encouragement in doing this project successfully and also for providing all necessary help to collect data from various units and patients. I am also thankful to Mr. Arun George, Project fellow, for the assistance given to me during survey. Finally, I take this opportunity to thank all those who helped me to complete my research work successfully.

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