|Year : 2012 | Volume
| Issue : 3 | Page : 293-297
An experience with 156 patients attending a newly organized pain and palliative care clinic in a tertiary hospital
M Lal1, S Raheja2, S Kale2, N Das1, AR Gogia2, KT Bhowmik1
1 Department of Radiotherapy, Safdarjung Hospital and VMMC, New Delhi, India
2 Department of Anaesthesia, Safdarjung Hospital and VMMC, New Delhi, India
|Date of Web Publication||12-Dec-2012|
Department of Radiotherapy, Safdarjung Hospital and VMMC, New Delhi
Source of Support: None, Conflict of Interest: None
Context: Pain and palliative care clinic (PCC). Aims: The primary object of this study was to enumerate the demographic characteristics of patients attending a newly organized PCC. The secondary purpose was to detect symptom prevalence and frequency of different cancers in these patients. Settings and Design: Prospective cross-sectional descriptive study. Materials and Methods: A prospective cross-sectional descriptive study was done on patients referred to the PCC of a tertiary hospital in North India. Comprehensive details of all patients were recorded systematically on the first visit on a proforma specially prepared for the newly established palliative care clinic. Statistical Analysis Used: The descriptive statistics of palliative care data was presented in terms of frequencies and percentages (%) for categorical variables. Results: The data collected at our PCC showed that out of 156 patients, 87 were males and 69 were females. Patients of all ages varying from 6 to 85 years were seen. Most patients (82.1%) lived with their families, and 28 (17.1%) patients lived alone and had no financial support. The most common primary diagnoses were head and neck cancers (38.5%), carcinoma cervix (15.4%), breast cancer (10.3%), colorectal cancer (6.4%), and lung cancer (4.5%). Frequency of seven most common symptoms was pain (100%), insomnia (64.1%), loss of appetite (34.6%), nausea (32.7%), vomiting (32.1%), constipation (31.4%) and sore mouth (28.8%). Conclusions: Population-based studies determine the actual magnitude of sufferers and suffering and show that palliative care services should be included as an essential component in a tertiary care hospital. The objective should be to reach out to the patient and help in improving the patent's quality of life in every way possible.
Keywords: Diagnoses, palliative care, symptoms
|How to cite this article:|
Lal M, Raheja S, Kale S, Das N, Gogia A R, Bhowmik K T. An experience with 156 patients attending a newly organized pain and palliative care clinic in a tertiary hospital. Indian J Cancer 2012;49:293-7
|How to cite this URL:|
Lal M, Raheja S, Kale S, Das N, Gogia A R, Bhowmik K T. An experience with 156 patients attending a newly organized pain and palliative care clinic in a tertiary hospital. Indian J Cancer [serial online] 2012 [cited 2015 Sep 1];49:293-7. Available from: http://www.indianjcancer.com/text.asp?2012/49/3/293/104491
| » Introduction|| |
Demographic and epidemiological transitions and changes in lifestyle are leading to emergence of cancer and other chronic diseases as major public health problems in India. Cancer patients in North India reveal the prominence of tobacco-related cancers, which are amendable to primary prevention. Cancer registries in different parts of the country reveal that majority of cancer cases present in advanced stages and make treatment options prolonged and expensive. Therefore, the need for prevention, early detection and provision of pain and palliative care is mandatory in the holistic management of cancer.
World Health Organization (WHO) defines palliative care as the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms and psychological, social and spiritual problems is paramount. The goal of palliative care is to achieve the best possible quality of life for patients and their families. The term palliative care is used to describe supportive care when disease is no longer responsive to curative treatment.
Palliative care is in preliminary stages in northern India. Whereas the number of palliative care services along with clinical and epidemiological programs is increasing in western industrialized countries, in the developing world it remains at a dramatically low level. 
- Palliative care affirms life and dying as a normal process
- It neither hastens nor postpones death
It provides relief from pain and other distressing symptoms
It aims "to put life into their days and not just days into their life" - the idea is to help the person have a meaningful life, not just to live somehow till death
It aims at total care - physical, social, psychological and spiritual
- It is a team approach
It is individual specific - depends on assessment of patients and family needs
It shifts emphasis from technology to people " high touch-low tech"
- It is a partnership between the patient and team
It emphasizes an open and sensitive communication 
The primary object of this study was to evaluate the demographic data of patients attending the newly organized pain and palliative care clinic (PCC) service in a tertiary hospital in North India. The secondary purpose was to detect the frequency of symptoms and prevalence of different cancers in these patients. This may be regarded as the first step to the continuing audit program in this newly organized specialty.
| » Materials and Methods|| |
The study presents a total of 156 patients who were referred to the PCC of a tertiary hospital in North India by oncologists and radiotherapists. This was a prospective cross-sectional descriptive study. Relevant data was collected on a record sheet specially prepared for the clinic. All efforts were made to get maximum information during the first visit of the patient. The data sheets were completed exclusively by doctors who had successfully completed their basic certificate course from the Institute of Palliative Medicine (IPM), Calicut, Kerala. The proforma included the patient's history, diagnoses made based on biopsy findings, metastasis, prevalence symptoms, medications, complementary medications, intensity of pain [Visual Analogue Scale (VAS) scores 1-10], type, radiation and character of pain, and response to treatment given in our clinic. Symptoms were recorded at the first visit and then throughout the palliative care period. The main objective was to initiate totality of care as early as possible. Patients with diagnosis other than cancer were excluded. Patients visited the clinic regularly, based on the appointments made at the last visit or earlier if the patient had any complication or no relief from pain. A large number of patients came from far off rural areas and depended on family support for coming to the clinic. The descriptive statistics of palliative care data was presented in terms of frequencies and percentages (%) for categorical variables.
The survey did not involve any therapeutic interventions on the patients and did not lead to documentation of data other than that recommended for routine assessment and quality assurance. Therefore, approval of ethical committee was not sought.
| » Results|| |
Out of 156 patients, 87 (55.8%) were males and 69 (44.2%) were females. The age of these patients ranged from 6 to 85 years. Maximum numbers of patients (66.6%). having cancer were in the age group of 30-60 years.
Most patients lived with their families (82.1%) and had family support [Table 1], whereas 28 (17.1%) patients lived alone and had no financial support. The income of most patients was low, with 45 (28.8%) patients below poverty line, 63 (40.4%) in low-income group and 45 (28.8%) in middle-income group; only 3 (2%) patients were from a high-income group which implies that financial support was a major issue.
In our study, the most common primary diagnoses [Table 2] were head and neck cancers (38.5%), carcinoma cervix (15.4%), breast cancer (10.3%), colorectal cancer (6.4%), lung cancer (4.5%), and all others including osteosarcoma, Ewing sarcoma, soft tissue sarcoma, pancoast's tumor, malignant epithelial tumor, renal cell carcinoma, carcinoma gall bladder, carcinoma urinary bladder, carcinoma prostate, carcinoma stomach, carcinoma pancreas, and lymphomas were 25%.
The average number of symptoms at the first consultation was 7.8 per patient. Twelve different types of symptoms related to the illness were recorded during the first consultation. In the present study, frequency of various symptoms was recorded as pain (100%), insomnia (64.1%), loss of appetite (34.6%), nausea (32.7%), vomiting (32.1%), constipation (31.4%), sore mouth (28.8%), dysphasia (16.7%), discharge (16%), cough (10.9%), heartburn and urinary symptoms (9.6% each) [Table 3].
Pain was the main symptom. The majority of patients had pain of moderate intensity (46.8%). Severe pain was present in 39.1% patients, unbearable pain in 7.7% patients and mild pain was there in only 6.4% patients. Twenty-five percent patients had pain duration of more than 4 months. A similar number had pain for the last 2-4 months, 21% had pain for 1-2 months, 27.5% had pain for less than 1 month and 1.3% had pain lasting more than 6 months. Majority of patients (67.3%) had increased pain during the night and 25.6% had pain all the time. Radiation of pain was observed in 25.6% patients.
As part of treatment, 33.3% patients had undergone surgery, 89.7% had received radiotherapy and 80.8% had received chemotherapy before visiting the PCC. 85.5% patients were on palliative therapy by the time they were referred to PCC.
A total of 17.3% patients had taken some complementary therapy, other than allopathy. Maximum number (12.8%) took homeopathy, 2.6% took ayurveda and only 0.6% resorted to naturopathy. Due to lack of aggressive palliative care, patients sought alternative therapies to overcome their problems.
| » Discussion|| |
This study provides an understanding of the type of patients, their diagnosis and the symptom manifestation across a range of cancer patients who become identified as incurable by their treating physicians. The increasing number of patients attending the pain and palliative clinics shows that the specialty is evolving and other professionals are recognizing the need for the specialized palliative care service. 
Though the absolute number may be less, considering the different barriers to referral of the patients to the palliative care clinic by other disciplines, patient barriers of traveling to another clinic and lack of knowledge of the services offered, family barriers in assuming the clinic to be an end of life support clinic indicate a long way has to be traversed before palliative care can be offered to most of the patients in need. Similar studies done in other developing countries showed similar problems. ,,
The symptoms of the persons in the terminal phase of illness have been documented in a number of studies conducted in different countries. These studies show that the terminal phase of illness is associated with increased physical as well as significant psychological disturbances. ,,,
The male to female ratio in our study was comparable to other studies, which probably implies that the need for comfort care is equally appreciated for both sexes by their family members. , The wide age range shows that no age is exempt from this dreadful, life-threatening disease.
While it is not surprising that these patients present in the PCC with myriad of symptoms, it is of concern that these patients were already being treated by physicians, often specialists, and were still suffering from severe symptoms.  This could be explained by the fact that a patient who reports to have pain as the main symptom may have needs that actually go far beyond a simple physical complaint of pain. However, the complexity of patients' complaints is often underestimated by physicians and may account for a lack of referral. Altered symptom expression may be caused by factors such as impaired cognition or emotional existential or family distress and may not be recognized in busy oncological clinics. 
Moreover, as was observed, the primary care provider often addresses the therapeutic modalities like surgery, chemotherapy, and radiotherapy very aggressively till the very end of disease without really attending to the comfort issues of the patients such as pain, which often accounts for the delay in referrals. 
Though the concept of "Terminal Cancer Syndromes" is independent of age, sex, and histological cancer type as well as metastatic pattern, yet detailed evaluation and management of symptoms among patients dying from different incurable diseases will be helpful to the clinicians and contribute to improved patients' quality of life. ,
In our study, pain was the most common presenting complaint which was found to be moderate to severe in majority of our patients, and unbearable in a few in spite of some basic analgesic care that the patient was already taking. This clearly shows the lack of concern to this most distressing symptom. The second most common symptom in our group of patients was insomnia, which is similar to the findings of others who find it as a major concern after pain. , Insomnia was found to be the consequence of pain in most of our patients. The other two important symptoms observed in most studies were that of fatigue and loss of appetite Two multicenter analyses done abroad, one by Kutner et al. showon lack of energy as the commonest symptom, and another one by Vainio et al. found tiredness as an prominent symptom These symptoms significantly affected the patient's daily routine and "quality of life." Although professional psychological assessment could not be done in our patients, most patients did have obvious signs of depression. This appeared to be both due to physical symptoms and also awareness of the prognosis of the disease. A psychological support system in this respect would provide them better care.
Most of the patients had complaints of nausea, vomiting, anorexia, heartburn, urinary symptoms, oral ulcers, sore mouth and constipation. In accordance with the findings in other studies, we observed that pain, nausea, vomiting and anorexia were more easily treated than fatigue and depression. 
The lack of concern of the primary treating team toward the symptom complex and the stress laid only on the definitive treatment led the patients to seek various modes of alternative therapy such as homeopathy, ayurveda and naturopathy before presenting to the PCC.
| » Conclusion|| |
To conclude, palliative care services should be included as an essential department right at the inception of a tertiary care hospital. The palliative care clinic should have a multidisciplinary approach with aspects of psychological, social and financial support given equal emphasis. Last but not the least, awareness and sensitization of the primary health care providers in recognizing and treating pain and other symptoms occurring due to malignancy or due to treatment given for the disease and the need for early referral to palliative care clinic and not as a terminal resort is mandatory. The objective should be to reach out to the patient and help in improving the patient's quality of life in every way possible.
| » References|| |
|1.||Paleri A, Kumar S, Thankam K. Principles of Palliative Care. In: Cherian Varghese editor. Manual for palliative care, 1 st ed. New Delhi: Directorate general of health services Ministry of health and family welfare; 2005. |
|2.||Clemens KE, Kumar S, Bruera E, Klaschik E, Jaspers B, De Lima L. Palliative care in developing countries: What are the important issues? Palliat Med 2007;21:173-5. |
|3.||Ahmad NU, Haque MF, Khan F, Kamal MM. Palliative care out patient consultation service in a teaching hospital in Bangladesh. Mymensingh Med J 2011;20:98-103. |
|4.||Miyashita M, Hirai K, Morita T, Sanjo M, Uchitomi Y. Barriers to referral to inpatient palliative care units in Japan: A qualitative survey with content analysis. Support Care Cancer 2008;16:217-22. |
|5.||Morita T, Akechi T, Ikenaga M, Kizawa Y, Kohara H, Mukaiyama T, et al. Late referrals to specialized palliative care service in Japan. J Clin Oncol 2005;23:2637-44. |
|6.||Houts PS, Yasko JM, Harvey HA, Kahn SB, Hartz AJ, Hermann JF, et al. Unmet needs of persons with cancer in Pennsylvania during the period of terminal care. Cancer 1988;62:627-34. |
|7.||Vachon ML, Kristjanson L, Higginson I. Psychological issues in palliative care: The patient, the family and the process and outcome of care. J Pain Symptom Manage 1995;10:142-50. |
|8.||Cassileth BR, Lusk EJ, Walsh WP. Anxiety levels in patients with malignant disease. Hosp J 1986;2:57-69. |
|9.||Ingham JM, Porteonoy RK. Patient evaluation and outcome measures, the measurement of pain and other symptoms. In; Doyle D, editor. Oxford Textbook of Palliative Medicine. 3 rd ed. New York: Oxford University Press; 2007. |
|10.||Higginson IJ, Hearn J. A multicenter evaluation of cancer pain control by palliative care teams. J Pain Symptom Manage 1997;14:29-35. |
|11.||Morita T, Fujimoto K, Tei Y. Palliative Care Team: The First Year Audit in Japan. J Pain Symptom Manage 2005;29:458-65. |
|12.||Bruera E, Watanabe S. New developments in the assessment of pain in cancer patients. Support Care Cancer 1994;2:312-8. |
|13.||Nezamuddin A, Mustafa K, Mostak A, Shafiqur R. Needs of terminally ill patients and their families: An experience with fifty three patients attending a newly organized palliative care service in Bangladesh. Journal of BSA 2006;19:38-43. |
|14.||Vainio A, Auvinen A. Prevalence of symptoms among patients with advanced cancer: An international collaborative study. Symptom prevalence group. J Pain Symptom Manage 1996;12:3-10. |
|15.||Bruera E, Michaud M, Vigano A, Neumann CM, Watanabe S, Hanson J. Multidisciplinary symptom control clinic in a cancer center: A retrospective study. Support Care Cancer 2001;9:162-8. |
[Table 1], [Table 2], [Table 3]
|This article has been cited by|
|| result 1 Document Healthcare workers knowledge and attitude toward palliative care in an emerging tertiary centre in South-West Nigeria
| || Fadare, J.O., Obimakinde, A.M., Afolayan, J.M., (...), Aduloju, T., Adegun, P.T. |
| ||Source of the Document Indian Journal of Palliative Care. 2014; |