BLOG: Hospices across borders – Compassionate care comes to the doorstep

Jackie Butler continues her report from the Institute of Palliative Medicine in Kerala, southern India, 5,000 miles from St Luke’s. Today she joins a home care team visiting patients and families in the community.

Every year 2,000 new patients register with the Institute of Palliative Medicine in Kozhikode which serves the city and a surrounding area of 10km and a population of around 600,000. Nurses, doctors, and ancillary staff make around 20,000 patient contacts annually via the outpatient clinic, the inpatient unit and home visits.

Echoing the work of medics and volunteers in more than 100 local Pain and Palliative Care Society branches across a patchwork of rural villages, or panchayats, in the wider district, as well as hundreds more across the state of Kerala, the pioneering IPM is also a globally recognised centre of excellence, empathy, and education.

I was invited to follow some of the charitable organisation’s clinicians on their day-to-day visits and consultations. Beyond shared values and aims, it’s people who make an institution, and the professionalism and kindness I witnessed in Kerala reminded me straight away of St Luke’s own wonderful teams.

Staff here wear no uniforms or name badges, so it was initially impossible to tell the nurses from volunteers, the doctors from visitors, but all became clear once I’d been introduced. Language was tricky at times too, although compassion and respect go beyond words. Most staff here understand and speak at least some English, but day to day communication happens in Malayalam, the official language of Kerala. While I can understand simple words like hello (Namaskaram) and thank you (Nanni), the fluent flow of one of India’s most complex and hard to master tongues is way beyond me, so I was grateful for the doctors’ and nurses’ willingness to interpret and explain.

In the welcome cool of a shaded stone-built single-storey dwelling Dr Nayana stood by the bedside of an 80-year-old man. Suffering from renal problems, heart failure and diabetes, he sat silent and skeletal in a sleeveless vest and loincloth, the cracked, painful, and itchy skin on his feet and hands, arms and legs, all too obvious.

Nurse Sanjana handed the man’s wife a bottle of medicated oil and demonstrated how to gently massage it in for him – a small but significant way to make her husband a little more comfortable and ease her own concern.

Half an hour earlier we’d set off from IPM’s outpatient clinic in one of their two compact ambulance vehicles, generously sponsored by local community groups and steered by a dedicated driver with taxi-like knowledge of the area. There are usually two runs a day, backed up by an emergency service provided in association with three or four other palliative care providers in the wider district.

Masked up and ready for action, I was accompanying Sanjana and Nayana, who divides her professional time between palliative care here and her specialism in ENT at the hospital, on their morning home visits.

With a fat wadge of patient files wedged by the dashboard, we’d been bumping down narrow, windy roads fanning out from Kozhikode’s main roads, the equivalent of twisty single-track lanes in the depths of the South Hams, where grass grows in the middle of the road and rabbits play dare. Here, instead of high hedges and fields, they are lined on either side with trees, homes and paths that snake away into the undergrowth. At one point we were stalled for ten minutes by a baby calf that didn’t want to move; cows of all sizes are considered sacred by India’s Hindus.

It felt a little alarming to know that the vehicle was loaded with a plastic boxes full of controlled opioids and other commonly used drugs from Leena’s IPM pharmacy. Even though the containers were locked, I knew this scenario would never happen at home, but the priority is to give patients what they need quickly, reminiscent of the “just in case packs” often arranged for St Luke’s patients to avoid waiting for a prescription.

A nurse travelling solo would usually spend an hour or more with each patient, often once or twice daily depending on need, delivering medical and personal care, dealing with catheters, bed sores, bathing and sometimes armed with food parcels for families who are struggling. Volunteers visit separately to give psychosocial support to both patients and their families, often seeing people regularly over a period of months, like the befriending volunteers and professionals of St Luke’s Patient and Family Support Service.

But today’s were doctor-led medication and review visits – akin to duties usually undertaken by our Clinical Nurse Specialists – and time was limited. We started at 10am and by 1pm we had been to 10 patients’ homes and Nayana and Sanjana were scheduled to make another 10 visits in the afternoon.

The people we saw were approaching death for many reasons – stroke, dementia, cancer – and needed help with complex combinations of physical and mental health problems. Some had blood test results to consider, side effects of medications, both physical and psychological, to address.

Most homes here are detached and surrounded by their own land, even if small, many with just two rooms, kitchen and bathroom. Some places can only be reached on foot, and with few fences dividing territories, we traipsed through other families’ yards and gardens, negotiating menageries of dogs, cats and chickens.

Medications could generally be found lined up on the patient’s bedroom windowsill – brown paper packets of blister packs collected together in Tupperware boxes – and Sanjana’s first action was to check the patient’s blood pressure.
Nayana rested a comforting hand on the arm of a 77-year-old grandmother as she prescribed antibiotics for this family matriarch, sinking rapidly through broncho pneumonia, with added pain from swollen legs and skin lesions.

In a rundown house nearby, another elderly woman lay in bed confused, distressed and bruised after yet another fall, surrounded by photos of her son, daughter-in-law and grandchildren. Painkillers, kind smiles and reassurance were all Nayana and Sanjana could offer, acknowledging back in the ambulance that death was close.

After three hours every visit on the list was ticked off, except for one address where the only one home seemed to be a teeth-baring guard dog. We made a quick exit, and as we drove back to IPM I reflected on how comfortingly familiar my experiences with the clinical teams had been.

Barring differences in environment, heat and language – and the drugs in the back of the ambulance – the overriding feeling here, on the other side of the world, was of the same expert and human holistic support our teams deliver day in and day out at St Luke’s.

Click here to read the next instalment of Jackie’s time in India.