In 1999 Ms Marie Coughlan RN Traveled to:
The Karunashraya Hospice Bangalore, India
Ms Marie Coughlan RN
Palliative Care Nurse/Educator Sydney, Australia
Highlights
After Marie's visit, our staff is conscious of practicing universal precautions and have implemented infection control and waste management policies.
Kishore Rau, Karunashraya Hospice
The main thing here is to help people do things their way. It’s great to be able to watch as people here increase their own knowledge and skills and enthusiasm and rely on their own resources – that’s the real joy.
Marie Coughlan
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Read excerpts from her report
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Excerpts from her Report
The main activity of my visit was clinical teaching of medical and nursing staff, mainly on one to one basis, in symptom control, and small group work with nurses' aides on manual handling and palliative care back care. Formal group sessions were held with registered nurses and the medical officer on infection control and HIV/AIDS.
I discovered that an immediate need was to teach occupational health and safety measures with a special emphasis on infection in HIV/AIDS patients. This took priority and required alteration of plans for teaching.
Lasting results of my visit are implementation of infection control policies and practices, development and maintenance of systematic review of patients including documentation and symptom control, increased awareness of the importance of the nurses' role by other disciplines and a long-term collaboration between the hospice and me.
My advice to other Travelling Fellows: be prepared to be flexible with teaching plans and topics, and go more slowly than you usually would, and when there is only a small staff, be prepared for interruptions to your schedule and teaching sessions as patient priorities take over.
Full Report
Report on IAHPC Travelling Fellowship to Bangalore, India.
Marie Coughlan.
Goals
1. One to one clinical teaching of palliative care to hospice and home care staff.
2. Formal education sessions on symptom control and terminal care to hospice and home care staff.
3. Group teaching of nursing staff related to occupational heath and safety in palliative care, manual handling and back care
4. Assist in developing awareness of palliative care in HIV/AIDS
5. Assist hospice in developing collaborative network with other existing services for people with HIV/AIDS.
6. Assist hospice and home care in developing infection control and universal precautions protocols.
Introduction
Karunashraya Hospice is a 55-bedded freestanding hospice opened in April 1999 offering free services for patients with advanced cancer as part of the services of Bangalore Hospice Trust. My first experience of the Hospice Trust was in 1997 when I visited Bangalore and was fortunate to meet members of the Hospice Trust's home care team and the Trust's Managing Trustee.
Bangalore is a city of between 5 and 6 million people - it is a centre for information technology industries, the defence forces and multinational corporations, and hence is more 'Western' and more cosmopolitan than many other Indian cities. With this growth come other aspects of Western life - many people move cities or go overseas for work, or move from rural to urban situations. The notion of the 'joint family' (extended families which live together) is slowly disappearing here, especially within younger generations, and the ability to care for sick family members is compromised because there are often no family members at home to do the caring. In the poor families anyone who can works, so even when family members are together they may all be out working.
In response to this perceived need plans were already under way in 1997 to build a hospice for those patients who were unable to remain at home for terminal care.
Planning and Teaching.
I arrived on September 16th. My first couple of days were spent in seeing round the hospice, discussing my timetable, planning short and long term projects (as I would be staying on after my initial three weeks' teaching) and familiarising myself with the patients' problems, the nursing practices and the availability of drugs.
At present there are 4 registered nurses (Sisters of the Holy Cross), who work in the wards on rotating rosters, and 7 nurses' aides recruited mainly from local villages and trained in palliative care by the sisters(in addition to a one year general training). Two of the aides had previously worked in another hospice in Mumbai. The sister in charge and one of the ward sisters have attended short courses in palliative care in India and in the U.K. Medical services are provided by a retired G.P. (Dr. Ramnathan) who attends daily (and voluntarily) and a weekly visit by a consultant anaesthetist (Dr. Vijayaram) who has specialised in pain control and palliative care for several years, and who conducts clinical meetings which are a combination of discussion of patients from hospice and home care and education on relevant and current topics.
The home care team consists of 2 nurses and 1 family counsellor and covers the metropolitan area of Bangalore in two autorickshaws The team sees between 3 to 5 patients daily. They have seen about 500 patients in the last our years and at any one time have between 40 to 50 patients on the register.
It became clear from our initial discussions that the focus for my teaching would take a different direction than that which I had originally planned. The sister in charge (Sister Blaise) was keen to develop nursing documentation, policies and procedures of nursing practice and a system of record- keeping which would allow for retrospective study. She was also concerned that the nurses' aides should have education in manual handling of patients and in self-care (back care and psychosocial care).
There had also been discussion among the trustees about admitting patients with HIV/AIDS and a patient with AIDS had already been referred for home care. We agreed that education in infection control and basics of HIV/AIDS and palliative care were essential for hospice and home care staff prior to a decision about admitting patients with HIV/AIDS.
I had come prepared with teaching packages on palliative care in cancer but realised this teaching needed to be postponed until after our education sessions on the above topics. I rearranged my plans to incorporate one to one teaching on symptom control on a daily basis with the doctor and individual nursing sisters. The nurses' aides speak Kannada (Karnataka language), Malayalam (Kerala language) or Hindi, so we decided to focus on practical sessions in the mornings with these staff then progress to group sessions on infection control in palliative care.
At the time of my visit there were only between 6 to 10 patients which gave me a daily opportunity to discuss patients with the doctor and also to run the teaching sessions described above. I was also able to go out on several visits with the home care team. I contacted or visited doctors and non-government organisations working with people with HIV/AIDS and organised teaching sessions by them for the hospice staff and set up some meetings to discuss future collaboration.
The Experience.
In some ways Karunashraya is fortunate compared to most palliative care services in India. Certainly there was opportunity in the building of the hospice to design spacious grounds and verandahs (the grounds will be planted in the future with fruit trees and vegetables to allow the hospice to be as self-sufficient as possible in food supplies).
In other respects there were certainly difficulties to contend with; with respect to implementing infection control for example, each ward had been built without a sluice room posing real problems for disposal of waste (this is in the process of being redressed). The frequent power cuts in monsoon can cause frustration; on one occasion I was in the middle of attempting to suction a patient who had aspirated fluid (her whole soft palate was destroyed by carcinoma) when as they say in India 'current was gone' and we all passed several anxious minutes while the generator was organised. Also, since palliative care has only recently begun in India one of the tasks which faces Bangalore Hospice Trust is raising awareness both in the medical and nursing professions and in the general community.
From my point of view there were many things to which to adjust; here are a few of them.
Drugs
Many of the drugs which we routinely use in palliative care in Australia are either not available in India, or are combined with other unnecessary drugs in a compound e.g. Spasmo-proxyvon - Dicyclomine Hcl 10mg, dextropropoxyphene Hcl 65mg, acetaminophen 400mg is a regularly used analgesic - the concept of using only the drugs that are required may take some time to filter down through the pharmaceutical companies.
Drugs may be available but are prohibitively expensive necessitating use of cheaper and sometimes less effective drugs. Octreotide, for example, is available but management of bowel obstruction may rely on use of Buscopan and Haloperidol as although most common drugs are supplied free as part of the service of the hospice, patients need to buy their own drugs in the community. There is little point in starting a drug regime which cannot be continued if the patient decides to go home to die. Many of the patients have already spent significant amounts of money, sometimes all their savings, on intensive and questionable courses of chemotherapy before arriving at the hospice or being referred to home care.
Many drugs only come in injection or tablet form. There is a genuine and strong belief in India that injection is more effective than other routes, patients often not only prefer i.v. or i.m. injections, they actively ask for and expect them. Suppositories are rarely available. Giving drugs by alternative routes, e.g. subcutaneously, sublingually or rectally is a new concept and something that will take a little time for staff to get used to. Given that one of the priorities we identified in the course of our infection control sessions was to minimise injections to prevent needlestick injuries we are at present working on making our own suppositories for drugs like Valium, Morphine, Clonazepam, and anti-emetics.
Morphine
Morphine injections are available quite easily through a licensing system, ironically it is oral morphine which has taken so much work to obtain. In Bangalore we are fortunate that one of the local teaching hospitals makes oral morphine so supplies are consistently available. The difficulty arises when a patient would like to go home and needs to continue on morphine subcutaneously - morphine injection is licensed to the hospice and patients have to be registered here. A specific amount only is granted for each year (supplementary quotas can be ordered but can take some time to come through). Patients cannot obtain morphine from local doctors (or any other hospitals unless they are registered with that hospital). Home care does not visit on Sundays so even if one of the two donated syringe drivers is used, and morphine obtained from the hospice, daily reloading becomes a problem - many of the patients' relatives are illiterate and teaching them to load a syringe is difficult. Having to accept that patients going home might have to be managed on Step 2 drugs was hard.
Wound Management
Management of fungating wounds without the sophisticated dressings we take for granted in the West is a real test for the creative palliative care nurse. Metronidazole gel is available so there is usually some success in controlling malodorous wounds but no chance of cleaning away slough unless by surgical debridement (in itself fraught with difficulties due to the huge size of the wounds, and also because the sharps bin is a cardboard box so cutting down on sharps generation is a priority). Ooze and odour are the two main problems in wound management and this is often compounded for home care staff by the poor conditions in which patients live. One lady we visited lived in a single room with use of a room across the hall about 5ft x 5ft which served as kitchen, bathroom and storeroom. She had a fungating breast tumour which covered the entire left axilla down over half the chest wall and her daughters (who lived elsewhere) somehow managed to give her a shower each day prior to the visit of the home care team. This was by no means the poorest accommodation, some patients lived in slums or hutments which were so small that there was not even enough room to lie down fully stretched out.
Food and fluids.
Eating and drinking are of immense cultural importance in India. When someone is dying the hardest thing for relatives to accept is that the patient no longer requires food and drinks and it requires a great deal of patient explanation to get the message across. Even when patients are moribund, relatives will continue to feed with the result that aspiration pneumonia is not uncommon. Some of the patients of home care died from aspiration pneumonia during my stay. Even for nursing staff it is difficult to accept that the patient no longer needs to be fed or will suffer more problems if feeding and fluids continue (e.g. in bowel obstruction) - everyone feels better if the patient eats.
The Patients.
Most patients with cancer in India are first seen at an advanced stage of disease. Relatives will still attempt curative measures exhausting funds, the patient and themselves. A young man arrived in my first week at the hospice with acute leukemia, he was 28, had a wife of 23 who had finished her schooling at 14 and they had a little girl of 4 years. All of their savings had been spent on investigations. When he was told there might be some remission if he underwent chemotherapy he made the decision to come straight to the hospice - they had no more money for any treatments. He died of overwhelming infection ten days later.
There is no public health scheme, even in the Government hospitals' 'general wards' which theoretically provide free services the patient is expected to 'tip' for everything - nursing care, food, medicines, medical care - those who cannot afford 'tipping' are left in the bed and ignored unless some individual takes pity.
One of our ladies was referred from just such a hospital - she was in her sixties, was confused, immobile, incontinent, had head lice and had not even been washed in days.
Another gentleman arrived having been given chemotherapy in hospital and discharged two days later - he came to us moribund with every i.v. site infected, arms and legs where drips had been blown up like balloons, and in intense pain - he died of septicaemia.
Gaining a referral history or even some basic information is a struggle - the patients often arrive with a note stating 'this patient has advanced cancer - please give palliative care'! Then you start trying to piece the information together from the patient and relatives - a job made doubly difficult by the fact that the doctors do not usually tell the patients much, if anything, and their relatives are sometimes not much better informed.
There are many similarities with palliative care in Australia. It is a myth that Indian people grow up accepting the inevitability of death. In my second week a well-educated gentleman was admitted for symptom control. He had had a pancoast tumour of the left lung removed 6 months ago, he now had bone metastastes, neuropathic pain radiating down his right arm, dyspnoea, constipation and sleeplessness. He and his wife had spent months 'doctor-shopping', and by the time he arrived at the hospice had seen most of the oncologists in Bangalore and had dismissed them after various intervals, sometimes complying with treatments and sometimes not. He spent most of his days vacillating between refusal to discuss his symptoms, feelings, or proposed treatment and frantic anxiety, usually at night. He never slept and only once admitted his terror of dying to the night sister. His wife, who also often avoided discussing his problems or treatment discharged him from the hospice some days after his admission just as his symptoms were improving and they continued their fruitless search for more interventions.
Conclusion
My experience at Karunashraya was certainly worthwhile; I think I learned as much if not more than I taught. I feel I achieved most of the goals I had set for my three weeks although I would advise anyone teaching in this way to expect to go slowly and to be flexible to changes and disruptions to plans. Obviously, and especially when working with a small group of staff, the needs of the patients, (e.g. new patients arriving in the middle of a teaching session) are a priority. My 3-week stay was a little different in that I am still here and will be remaining at Karunashraya for another two months - it was obvious though that even after my first 3 weeks this would become a long-term collaboration between the hospice and me. I recommend anyone who has the time to spare to assist partners in palliative care in this way. The experience is a very humbling and moving one and we in the West come back the richer for it
Submitted by: Ms Marie Coughlan RN
