A Testimony from a delegate on Kochi Home Care Experience
4th to 7th February 2019 were allotted for Kochi Home Care Experience as one of the Pre-Conference workshops organized in connection with IAPCONKochi2019 – the 26th International Conference of Indian Association of Palliative Care. More delegates chose to accompany the home care teams of various palliative care units to have first-hand-knowledge about the magic behind the Kerala Model of Home Care.
Sr. Diana Opio, Registered General Nurse from UK, was one of the participants of the above pre conference workshop. Lets go into the details of what she had experienced during these home care programmes.
Thank you for your follow up e-mail requesting feedback after taking part in the pre-conference workshops at IAPCON Kochi in February 2019.
I am very pleased to respond, as in many ways, I feel my time with the Kochi home care teams was the highlight of the conference.
Brief summary of my 3 days with the home care teams:
– Monday, I was with the Anwar Memorial PPC Clinic, visiting both the 14 bedded Palliative Care Centre and going out on home visits. The team comprised of a doctor, nurse and 2 volunteers.
– Tuesday, I attended the clinical meeting at Ernakulum Hospital, Palliative Care Centre. Here I sat in the meeting when the home care nurses fed back to Dr. Athul about their patients at home, commenting on the patient’s current situation, discussing issues and agreeing care plans, we then went out on home visits with a home care nurse, 2 volunteers and another conference delegate.
– Wednesday, I was with the Thanal Pain and Palliative Care Home Care Team, and went out on visits with 2 nurses a volunteer and another conference delegate.
The situation in Kerala is obviously different from that in the UK, where most health care is provided free by the government. Although hospices in the UK provide much end of life care, these hospices are charities mostly funded by their local communities. I have been working in a hospice as a Community Palliative Care Nurse Specialist and had a case load of 30-40 patients who I see in their homes. So this is very similar to the work of the Kochi home care teams although I work alone and drive myself to the patients’ home. But I can request a doctor or other health worker ie., physiotherapist, occupational therapist, counsellor or spiritual leader to also see the patient and family, and can even refer them for support from one of our volunteers, but I rarely see these other health workers and mostly communication is by email and computerised case notes.
Below I am sharing some of my observations mainly in relation to comparing the Kochi services with those back in the UK:
The things particularly of note were:
– Firstly, how the local community is so involved and supports their local Pain and Palliative Care teams in many ways: with their time, care, love, food, finances and resources. The care and concern of local people for their neighbours was so inspiring, and you could see people go the ‘extra mile’ to help others. It really felt like volunteers loved their role in supporting others and often had a special bond with patients and family as well as other volunteers and health workers in the team. I would love for communities in the UK to be more involved and to also feel a responsibility towards the well-being of people in their communities. My experience with the Kochi home care teams has inspired me to think about how we in the UK can more effectively involve communities. I also felt rather jealous of the team spirit you have, and which I was able to also enjoy during my time with the teams, when we sat together for tea breaks and meals prepared with love by volunteers. No one seemed to be working alone, caring for the dying and their families can lead to a lot of stress especially for those who work mostly alone.
– Secondly, observing the tasks the palliative care nurses carried out made me question the definition of ‘palliative care’, and this was a strong theme that came out during the conference sessions. What role should ‘palliative care’ play? In the West it is increasingly that palliative care is a specialised service for patients in their last 6-12 months of life, for those who have distressing symptoms which need specialist management. However, where there is limited health infrastructure, palliative care with its holistic approach so appropriately provides comfort, well- being and convenience for people living at home. I could see that many of the tasks the Kochi home care teams performed were basic nursing procedures such as changing catheters or undertaking wound care for frail patients who otherwise would have to go to a hospital or a clinic, which is often disruptive and unpleasant for them. I think that when a service is funded and supported by a community, then it should provide a service that meets the needs of that community. The Kochi home care services very much demonstrates ‘Palliative Care’ is about providing dignity, care and comfort to people whose life is limited (rather than specialist palliative care), which I feel is very appropriate in such a setting.
– Thirdly, (which links into my comments above) is the ‘type of patient’ the palliative care team sees, which differs from my experience in the UK. I was surprised that there were quite a few young men who were under palliative care after becoming paraplegic often following an accident, and their main need was really for physiotherapy in order to maximise the quality of their life and a frank discussion about their future mobility expectations. Others were the frail elderly, mostly in need of a change of catheter or wound care. I also heard in the case review meeting, that many patients had mental health problems, and again the home care teams are probably the only service easily accessible to these people, and the community support the team offers is probably far more appropriate that them going into a hospital.
– Fourthly, more procedures were carried out in the homes by the nurses such as ascitic drainage, iv fluids and pro-active pressure sore management for deep wounds. In the UK these procedures would need hospitalisation, but here many people cannot afford this or are too frail to travel. So being able to carry out procedures in the home to improve quality of life, when monitored and done in a safe manner, is accessible and affordable and certainly seems to be in the best interests of palliative care patients.
– Fifthly, the teams in Kochi have a good holistic approach. Patients not only received the care interventions from available health professionals, but also their social needs were helped especially by the volunteers, there was also an awareness of their spiritual needs, but not speaking the local language made this difficult to observe. Financial help was also available from the organisations, and indeed we saw the community had built a house of good structure for an elderly woman whose home had been destroyed by the flood last August.
Other thoughts/comments (being mindful that the UK and Kochi are very different culturally and resource-wise, and that UK patients are closer to the dying phase):
– In the UK we would try to avoid giving injections when a patient can take medicines orally, and for patients nearing the end of life we also rarely give IV fluid unless it will improve their quality of life
– We would also stop undertaking routine observations such as blood pressure and temperatures, as when someone is dying as we want the focus to be on the person not the BP or IV, and so aim to create a peaceful environment. Carrying out these procedures we feel medicalises the dying process which should be a normal process.
– I know there is a push to have physiotherapists on the Kochi teams, and I would encourage this, as this would be life changing to paraplegic patients who are often young and can still do much with their life.
– Although I didn’t understand the language, I could see everyone was kind and caring to the patients. Good communications skills can really help to give psychological support especially helping patients and families to come to terms with dying. I would suggest nurses have the opportunity to develop their communications skills to a higher level so they feel comfortable talking about end of life to the patient and family.
Seeing how effective Kerala is with its community palliative care service, I wonder how this has been achieved and am inquisitive to know if the more communist influence, or more open minded religious groups, or due to pioneers who have shouted the palliative message, or due to Kerala’s rich and diverse history, or perhaps all these aspects have made it stand out as a beacon to the rest of the world.
In summary, my observations were that the Kochi home care teams are doing an excellent job in a resource limited community setting. They were meeting the needs of their patients and families, and it was very helpful for me to see a different model of palliative care in the community setting (different from a Western definition and model of palliative care), and a setting from which I could find inspiration to look at how things could be done differently back in the UK. Community involvement and support is highly commended and the world would be a much better place if such a model of community involvement could be adopted globally.
Thank you all for the privilege of being able to share your excellent services with me and for the beautiful hospitality I received from you all. And thank you especially to the organising committee for all your hard work in coordinating such a wonderful conference which was so informative and enjoyable.
RGN, MA, BA(Hons), PGCE,
Diplomas in: Palliative Care, Health Services Management, Practical Spirituality and Wellness