Indian Journal of Palliative Care
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   2009| January-June  | Volume 15 | Issue 1  
    Online since July 17, 2009

 
 
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ORIGINAL ARTICLES
Prevalence of pain in patients with HIV/AIDS: A cross-sectional survey in a South Indian state
Shoba N Nair, Theophin Regina Mary, S Prarthana, Preethy Harrison
January-June 2009, 15(1):67-70
DOI:10.4103/0973-1075.53550  PMID:20606859
Objectives: Primary - To measure the prevalence of pain in HIV/AIDS with patients. Secondary - To assess the type, site, severity, management of pain and impact of pain on quality of life in these patients. Design: Multicentre cross-sectional survey (This paper is a pilot study). Settings: ART centre at St. John's Medical College Hospital, Bangalore and Snehadan, A supportive and care centre for HIV/ AIDS patients at Bangalore. Materials and Methods: Data sheet, Brief pain inventory and Short - Form McGill pain questionnaire. Subjects: This is an ongoing study and the pilot study includes 140 HIV/AIDS patients in different stages of the disease. Results: About 66.7% (28/42) in-patients and 24.5% (24/98) out-patients complained of pain. Of the 52 patients who reported pain, 32% (14/52) reported neuropathic pain and 68% (38/52) reported noci-ceptive pain. Headache was most common followed by pain in the soles of feet and low back. Only 26.9% (17/52) received any form of analgesic. Pain severity significantly affects the quality of life. Conclusions: Pain is a common and debilitating symptom of HIV/AIDS. It is however, under-estimated and under treated.
  13 7,048 388
Palliative care physicians' religious / world view and attitude towards euthanasia: A quantitative study among flemish palliative care physicians
B Broeckaert, J Gielen, T Van Iersel, S Van den Branden
January-June 2009, 15(1):41-50
DOI:10.4103/0973-1075.53511  PMID:20606855
Aims: To Study the religious and ideological views and practice of Palliative Care physician towards Euthanasia. Materials and Methods: An anonymous self administered questionnaire approved by Flemish Palliative Care Federation and its ethics steering group was sent to all physicians(n-147) working in Flemish Palliative Care. Questionnaire consisted of three parts. In first part responded were requested to provide demographic information. In second part the respondents were asked to provide information concerning their religion or world view through several questions enquiring after religious or ideological affiliation,religious or ideological self-definition, view on life after death, image of God, spirituality, importance of rituals in their life, religious practice, and importance of religion in life. The third part consisted of a list of attitudinal statements regarding different treatment decisions in advanced disease on which the respondents had to give their opinion using a five-point Likert scale.99 physician responded. Results: We were able to distinguish four clusters: Church-going physicians, infrequently church-going physicians, atheists and doubters. We found that like the Belgian general public, many Flemish palliative care physicians concoct their own religious or ideological identity and feel free to drift away from traditional religious and ideological authorities. Conclusions: In our research we noted that physicians who have a strong belief in God and express their faith through participation in prayer and rituals, tend to be more critical toward euthanasia. Physicians who deny the existence of a transcendent power and hardly attend religious services are more likely to approve of euthanasia even in the case of minors or demented patients. In this way this study confirms the influence of religion and world view on attitudes toward euthanasia.
  11 7,929 333
REVIEW ARTICLES
Communication with relatives and collusion in palliative care: A cross-cultural perspective
Santosh K Chaturvedi, Carmen G Loiselle, Prabha S Chandra
January-June 2009, 15(1):2-9
DOI:10.4103/0973-1075.53485  PMID:20606848
Handling collusion among patients and family members is one of the biggest challenges that palliative care professionals face across cultures. Communication with patients and relatives can be complex particularly in filial cultures where families play an important role in illness management and treatment decision-making. Collusion comes in different forms and intensity and is often not absolute. Some illness-related issues may be discussed with the patient, whereas others are left unspoken. Particularly in palliative care, the transition from curative to palliative treatment and discussion of death and dying are often topics involving collusion. Communication patterns may also be influenced by age, gender, age, and family role. This paper outlines different types of collusion and how collusion manifests in Indian and Western cultures. In addition, promising avenues for future research are presented.
  9 12,798 783
Breakthrough cancer pain: Review of prevalence, characteristics and management
Seema Mishra, Sushma Bhatnagar, Prakash Chaudhary, Shiv Pratap Singh Rana
January-June 2009, 15(1):14-18
DOI:10.4103/0973-1075.53506  PMID:20606850
Breakthrough pain has been associated with a reduced likelihood of adequate pain control. Despite the large and variable incidence of this phenomenon due to varied definitions of this type of pain, only a few studies have been conducted to assess and effectively treat breakthrough pain though the importance of managing breakthrough pain has been acknowledged by all. A large number of drugs from various classes and novel methods of administration like nasal and transmucosal buccal route, as in the case of fentanyl, have been used in these studies to manage this type of pain. A drug is needed with a quick onset of action and optimal duration that matches the characteristics of breakthrough pain. Some steps have been taken in earlier studies which used nasal formulation of fentanyl as it was found to achieve adequate and quick pain relief. However, further studies are required to confirm this so that in the future we can have as effective protocols for managing breakthrough pain as we have today for managing persistent pain as given by the World Health Organization.
  8 9,963 561
Treatment decisions in advanced disease: A conceptual framework
Bert Broeckaert, The Flemish Palliative Care Federation
January-June 2009, 15(1):30-36
DOI:10.4103/0973-1075.53509  PMID:20606853
This English translation, made by a professional translator in close cooperation with the author and kindly proofread by Dr. Phil Larkin, follows the original text as closely as possible. However, though we thought it was wise to maintain the official (but not unproblematic) Dutch/Belgian definition of euthanasia in the original text (written for Belgian readers), the English texts offers a new and clearer definition of euthanasia. From the very beginning of the Belgian euthanasia debate in 1999, the Flemish Palliative Care Federation has chosen not to stay on the sideline, but to take an active part in the discussion and formulate recommendations based on our expertise and experience. Time and again we have pointed out that the ethical issues at the end of life are not just restricted to those of euthanasia. We have found that there is still much confusion about, for example, the difference or the boundary between pain control and euthanasia or between euthanasia and withholding life-sustaining treatment. Therefore, we thought it appropriate to put the following conceptual framework with regard to treatment decisions in advanced illness forward.
  7 3,994 289
ORIGINAL ARTICLES
Palliative care services for Indian migrants in Australia: Experiences of the family of terminally Ill patients
Sujatha Shanmugasundaram, Margaret O'Connor
January-June 2009, 15(1):76-83
DOI:10.4103/0973-1075.53589  PMID:20606861
Background: The way that health care systems in developing countries like India care for dying patients, has an impact on the expectations of such care for those who migrate to other countries faces. At the end of life, cultural issues may impact on the quality of life remaining and for that reason, it is important that particular cultural practices are understood. This paper describes a study that investigated the cultural issues of access to palliative care services for Indian migrants in Australia. Purpose of the Study: To investigate the experiences of the family members of terminally ill Indian migrants in Victoria, Australia. Objective of the Study: To explore the issues related to accessing palliative care services for Indian migrants; to identify the effectiveness of palliative care in supporting the patient and family and to recommend strategies for improving this care. Materials and Methods: A qualitative descriptive design was utilized. Up to 6 family members were selected for in-depth interviews in understanding cultural issues related to the palliative care services for a family member. Results: Analysis of the interviews revealed that families of Indian patients experience difficulties whilst receiving palliative care services, which fell into three main categories: Indian support systems, cultural issues, and caring experiences. Although each of these issues had a direct influence on the experience of terminal care that their family member received, cultural issues and support systems also influenced the caring experiences. Conclusion: Despite the successful implementation of palliative care services across Australia, there are still problems in accessing and receiving the services among minority and disadvantaged groups like various cultural groups.
  6 4,800 275
Breaking bad news issues: A survey among radiation oncologists
Milind Kumar, Shikha Goyal, Karuna Singh, Subhas Pandit, DN Sharma, Arun K Verma, GK Rath, Sushma Bhatnagar
January-June 2009, 15(1):61-66
DOI:10.4103/0973-1075.53533  PMID:20606858
Introduction: Discussion of bad news and resuscitation in terminal cancer is an important but difficult and often neglected issue in day-to-day oncology practice. Materials and Methods: We interviewed 35 radiation oncologists using an indigenous 15-item questionnaire on their beliefs about breaking bad news and resuscitation to terminal cancer patients. Results: Most responders had an oncology experience of three to seven years (20/35).Thirty-two were comfortable discussing cancer diagnosis, prognosis and life expectancy-related issues. A similar number believed all cancer-related information should be disclosed, while only four believed in imparting all information in one visit. All agreed that disclosing sensitive information did not affect survival. When requested by relatives to withhold truth from patients, 11 said they would not comply, 22 agreed to tell the truth only if asked and two agreed to avoid difficult questions. Twenty responders denied having been adequately trained in breaking bad news and were keen on dedicated classes or sessions in this area of practice. Most (33/35) believed that Indian patients were keen on knowing their diagnosis and prognosis. Although all agreed to the importance of discussing resuscitation, only 17 believed patients should be involved. Majority (20/35) agreed that the issue needs to be discussed while the patient was conscious. Patients with unsalvageable disease were deemed unsuitable for aggressive resuscitation by 30 responders while the rest believed it should be offered to all. Most (21/35) admitted to feeling depressed after breaking bad news though only seven felt disclosure was more stressful than untruthful statements. Only four knew of a law regarding resuscitation in cancer. Conclusion: Observing the widely varied beliefs and practices for disclosing bad news, it is recommended that such training be a regular part of medicine curriculum, especially in the Oncology setting.
  6 4,585 344
REVIEW ARTICLES
Fatigue in cancer: A review of literature
Vijayakumar Narayanan, Cherian Koshy
January-June 2009, 15(1):19-25
DOI:10.4103/0973-1075.53507  PMID:20606851
Fatigue is a common symptom of advanced cancer limiting one's activity and affecting the quality of life. It is a multidimensional symptom complex with subjective and objective components. Hence, its definition and assessment seems arbitrary, incomplete, and elusive. Components of fatigue often merge with other 'disease states' as anemia, depression and so on, compounding difficulty to assess it separately. Fatigue has a high prevalence rate, and lasts longer in chronic diseases like cancer. Its association with treatment modalities like chemotherapy, radiotherapy alongside the primary disease process makes it seemingly ubiquitous in many cases. Systemic manifestation of cancer causes excess demand on body resources on cell repair, uncontrolled growth with metabolite accumulation causing fatigue. Co-morbid conditions of organic and psychological nature causes fatigue. There are many assessment tools for fatigue with different uses and objectives, simple and reproducible tools like Brief Fatigue Inventory, Edmonton Symptom assessment scale seem feasible in everyday practice. Management of fatigue is not straightforward and rewarding. Although treatment of cause appears to be an attractive option, it is not possible in all cases. Therapeutic agents targeting cytokine load is in early stages of study and available results are not favorable. Specific measures aimed at pain relief, prevention/treatment of sepsis, management of depression, avoidance of drugs causing fatigue, restoring the metabolic profile are important. Methyl phenidate, megestrol, and modafinil are some drugs with promising effect to treat fatigue, though confirmatory studies are yet to be established. Non-pharmacological methods are also helpful. Forewarning patients on upcoming fatigue, active regular exercise, and stress management are some of them. Fatigue being a multidimensional entity, single mode of therapy is insufficient. Combined modality tailored to individual patient need and understanding may be the right way to battle this ill-understood symptom. This review article examines the etiopathogenesis and management strategies of fatigue in cancer.
  6 7,927 557
Dental expression and role in palliative treatment
Rajiv Saini, PP Marawar, Sujata Shete, Santosh Saini, Ameet Mani
January-June 2009, 15(1):26-29
DOI:10.4103/0973-1075.53508  PMID:20606852
World Health Organization defines palliative care as the active total care of patients whose disease is not responding to curative treatment. Palliative care for the terminally ill is based on a multidimensional approach to provide whole-person comfort care while maintaining optimal function; dental care plays an important role in this multidisciplinary approach. The aim of the present study is to review significance of dentist's role to determine whether mouth care was effectively assessed and implemented in the palliative care setting. The oral problems experienced by the hospice head and neck patient clearly affect the quality of his or her remaining life. Dentist plays an essential role in palliative care by the maintenance of oral hygiene; dental examination may identify and cure opportunistic infections and dental disease like caries, periodontal disease, oral mucosal problems or prosthetic requirement. Oral care may reduce not only the microbial load of the mouth but the risk for pain and oral infection as well. This multidisciplinary approach to palliative care, including a dentist, may reduce the oral debilities that influence the patient's ability to speak, eat or swallow. This review highlighted that without effective assessment of the mouth, the appropriate implementation of care will not be delivered. Palliative dental care has been fundamental in management of patients with active, progressive, far-advanced disease in which the oral cavity has been compromised either by the disease directly or by its treatment; the focus of care is quality of life.
  5 11,853 464
The palliative care movement in India: Another freedom struggle or a silent revolution?
Cherian Koshy
January-June 2009, 15(1):10-13
DOI:10.4103/0973-1075.53495  PMID:20606849
The message of palliative care in India has become a movement in several parts of India in a short span of time. The past two decades have seen palpable changes in the mindset of health care providers, and policy makers with respect to the urgency in providing palliative care. With a population of over a billion spread over a vast geo-political mosaic, the reach and reliability of palliative care programmes may appear staggering and insurmountable. Nonetheless we have reasons to be proud in that we have overcome several hurdles and is presently in a 'consolidation mode'. It is only a matter of time before the 'aam admi' has access to good palliative care. Easing narcotic licensing procedures, creation of standard operating procedures for morphine availability and the passing of the 'Palliative Care Policy' by the Government of Kerala are commendable milestones. We are today having more of 'silver linings' and less of 'dark clouds'.
  4 3,870 391
ORIGINAL ARTICLES
Role of percutaneous nephrostomy in advanced cervical carcinoma with obstructive uropathy: A case series
Kamlesh Mishra, Ava Desai, Shilpa Patel, Meeta Mankad, Kalpana Dave
January-June 2009, 15(1):37-40
DOI:10.4103/0973-1075.53510  PMID:20606854
Aims and Objective: Over 70% of the cases present in advanced stages of the disease and are associated with poor prognosis and high mortality rates. In many of them, it is difficult to offer definitive treatment as they present in uremia due to associated obstructive uropathy. There are no clear-cut guidelines for performing percutaneous nephrostomy (PCN) in patients of advanced cervical cancer. The results are unpredictable in terms of benefits achieved in these cases. Thus, we evaluated our experiences with PCN in the management of cervical cancer patients presenting with obstructive uropathy. Material and Methods: 15 patients of cervical cancer with obstructive uropathy and deranged renal functions were retrospectively evaluated for the role of PCN in their management Results: PCN was done in 15 patients of advanced cervical cancer. The mean age of patients was 44.5 years. Twelve (80%) patients presented primarily with advanced cervical carcinoma and obstructive uropathy. Three (20%) were already treated. Symptomatic improvement and significant fall of mean serum creatinine value from 7.5 mg% to 0.9 mg% over a period of 1-3 weeks was noted post PCN. Out of 12 patient with primary untreated advanced disease, curative treatment was possible in 3, palliative radiotherapy/chemo-therapy in 7 and only symptomatic treatment in 2 cases, after obstructive uropathy was managed with PCN insertion. Out of 3 already treated patients, 2 were disease free after curative radiotherapy/surgery. PCN was done to prevent permanent kidney damage in them. One patient was defaulter of curative radiotherapy. She had progressive residual disease. Complications like hemorrhage (20%), infection (26%), reinsertion for dislodgment/misplacement (53%), percutaneous leak or perinephric leak (20%), blockage of PCN (33%) were noticed. Conclusion: In spite of inherent, albeit manageable complications, PCN is a simple and safe technique. One of the major benefits observed was ability to administer either curative/palliative radiotherapy or chemotherapy in 85% of patients (11 out of 13 with disease). There was no active disease in remaining 2 patients. Therefore, the decision to attempt PCN in carefully selected cervical cancer patients is justified.
  3 4,630 333
CASE REPORT
Pain management in pediatric age group
R Namrata, PV Ramamani, G Saroja
January-June 2009, 15(1):84-85
DOI:10.4103/0973-1075.53590  PMID:20606862
The management of pain in palliative care of children is somewhat different from that in adults.The use of opioids in pediatric palliative care presents some unique challenges. Confident and rational use of opioids, illustrated by WHO Guidelines is essential for adequate management of pain in children with life limiting conditions.
  1 4,321 339
EDITORIAL
A new beginning to excel
Sushma Bhatnagar
January-June 2009, 15(1):1-1
DOI:10.4103/0973-1075.53484  PMID:20606847
  - 2,435 481
ORIGINAL ARTICLES
Palliative care in Parkinson's disease: Role of cognitive behavior therapy
Samput Mallick
January-June 2009, 15(1):51-56
DOI:10.4103/0973-1075.53512  PMID:20606856
Background : Parkinson's disease (PD) is a chronic, progressive, neurodegenerative disorder that leads to the classic features of akinesia (encompassing hypokinesia and bradykinesia), tremor, rigidity and postural instability. Other non-motor complications include depression, fatigue, pain, and sleep disturbances. For the management of these complications, non-pharmacological techniques, such as Cognitive-behavioral therapy (CBT) can be used. This can focus on overt behavior and underlying cognitions and train the patient in coping strategies to obtain better symptom control. Objectives: To review studies on CBT as palliative care in PD patients. Materials and Methods: A survey was conducted for all available English-language studies by means of a MEDLINE search. Keywords in the searches included Parkinson's disease, palliative care, and cognitive behavior therapy. All articles that reported the cognitive behavior therapy and palliative care in a group of PD patients regardless of the method used by the researchers were identified and analyzed. Result and Conclusion: CBT has a strong evidence base for its use and has proven to be an effective treatment in management of people with chronic pain, fatigue syndrome, depression and sleep disturbances, with efficacy that lasts beyond the duration of treatment. Although PD patients suffer from these complications, there are only a few studies on administration of CBT on them. Considering its effectiveness, CBT can be used as an option for palliative care for PD patients, directed toward improving the patient's functional status, clinical disability and quality of life. Further studies are required in this area.
  - 5,746 419
The functional status of patients with AIDS attending antiretroviral treatment center
TJ Thejus, MC Jeeja, T Jayakrishnan
January-June 2009, 15(1):57-60
DOI:10.4103/0973-1075.53513  PMID:20606857
Aims: To assess the functional status of patients with Acquired immunodeficiency syndrome (AIDS) registered in the Anti-Retroviral Treatment (ART) center. Materials and Methods: Design: Descriptive study. Study setting: ART center in Calicut Medical College, Kerala, India. Subjects: Cohorts of AIDS patients attending the ART center during the year 2007. Data collection: Done prospectively from the secondary data available from the center. Outcome measures: The demographic, morbidity, functional status and laboratory parameters were collected. Data processing was done using Excel datasheet and analysis were done using Epi info 2003. Results: One hundred and ninety-five patients received care during this period; 69% were males. The mean age was 389 years; 80% of them were married and in 50% of their spouses also tested positive for HIV. The mean CD4 count was 127 cells/microliter. The majority (90%) were categorized as WHO Stage 3 or 4 of HIV. Only 52% of them were able to perform their usual work in or outside their house; the rest were not able to lead an economically productive life. Thirty-six per cent were only able to perform activities of daily living; 12% were bedridden.The functional status of the patients positively correlated with WHO disease stage ( P = < 0-0001), and CD4 count and hemoglobin levels negatively correlated with staging ( P = <0.001). 62% are having any of the opportunistic infections. Conclusion: Fifty per cent of the AIDS patients are disabled and need support and care. As AIDS is a growing problem, community-based palliative care for AIDS patients should be strengthened in India.
  - 3,456 275
Role of palliative radiotherapy in brain metastases
Ramesh S Bilimagga, S Nirmala, Karthik S Rishi, MG Janaki, Arul Ponni, AG Rajeev, Suman Kalyan
January-June 2009, 15(1):71-75
DOI:10.4103/0973-1075.53588  PMID:20606860
Background: Brain metastases are a common manifestation of systemic cancer and exceed primary brain tumors in number and are a significant cause of neurologic problems. They affect 20-40% of all cancer patients. Aggressive management of brain metastases is effective in both symptom palliation and prolonging the life. Radiotherapy has a major role to play in the management of brain metastases. AIM: The aim of the study was to know the outcome of palliative radiotherapy in symptomatic brain metastases in terms of improvement in their performance status. Materials and Methods: This is a retrospective study of 63 patients diagnosed to have brain metastases and treated with palliative whole brain radiotherapy to a dose of 30 Gy in 10 fractions over two weeks between June 1998 and June 2007. Diagnosis was done in most of the cases with computed tomography scan and in a few with magnetic resonance imaging. Improvement in presenting symptoms has been assessed in terms of improvement in their performance status by using the ECOG scale. Results: Fifty-four patients completed the planned treatment. Eight patients received concurrent Temozolamide; 88% of patients had symptom relief at one month follow-up; 39/54 patients had a follow-up of just one to three months. Hence survival could not be assessed in this study. Conclusion: External beam radiotherapy in the dose of 30 Gy over two weeks achieved good palliation in terms improvement in their performance status in 88% of patients. Addition of concurrent and adjuvant Timozolamide may improve the results.
  - 7,389 315
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