Jackie Butler continues her report from the Institute of Palliative Medicine in Kerala, southern India. Today she’s shadowing the outpatient and inpatient clinical teams.
Six days a week, on the dot of 8.30am, staff throw open the doors of the outpatient clinic at IPM and check who is waiting outside. Like our UK A&E departments, people are generally seen on a walk-in, first come, first served basis, although an emergency will, of course, be bumped to the front of the queue.
This is the institute’s all-important hub for triaging, registering a patient and determining their needs, something like the St Luke’s hospital team assessing and caring for patients at Derriford.
While most people will have a terminal diagnosis, the criteria to be eligible for care are blurrier in Kerala than in the UK. Physical or mental deterioration stemming from old age rather than illness, for example, is considered a valid reason to be seen. Individuals can refer themselves or bring in a family member they are concerned about, although many arrive on recommendation from the Medical College’s nearby oncology centre.
A sports hall style temporary building in the grounds of the institute, the clinic’s modest design belies its vital role. There’s just one big open space, crudely sectioned off with a reception desk, shelf units and filing cabinets, a handful of beds, a few screens, chairs and a central table where doctors, nurses and interns study patient notes and discuss options.
One corner houses Leena’s dispensing pharmacy, with the nerve centre for the home care teams tucked in behind. It’s a temporary solution that would, no doubt, be frowned upon in Britain but, in a place where so much of life is lived in the open, personal privacy isn’t such a huge issue, especially when people’s wellbeing is at stake. There are long-term plans for a purpose-built clinic but for now they make do.
If it’s a patient’s first visit then there’s lots of paperwork to fill in as the doctors and nurses build up a comprehensive picture of their life and personal circumstances, not simply a record of their symptoms, diagnosis, or medications. Once registered, the patient keeps their own logbook to chart their IPM journey so all information is available one place. Digital notes are still some way off here.
A dedicated team of six to eight doctors and 15 nurses is shared with the institute’s inpatient unit, creating a welcome continuity. On duty when I visited was Shyni, a staff nurse so passionate about providing the very best palliative care for patients that she’d recently undergone two weeks intensive training at the esteemed St Christopher’s Hospice in London.
“The atmosphere is very different in palliative care and nurses have a specific and important role. We are attached to the patient and their relatives, and you get to know them very well,” she said. “This work also gives me great scope to improve myself and it has certainly helped my confidence levels.”
In common with St Luke’s doctors, nurses, health care assistants and social support teams, clinicians at IPM take a holistic view of each patient.
“What we always look for is the thing that is most distressing them. How do they feel about their disease and their prognosis? Is their priority something physical, mental, spiritual or social? We are guided by that to address their most important issue first, because that will make the biggest difference to them,” said Shyni.
“If they are desperate to reduce breathlessness, then we will look at that. If they are in serious mental distress, we can arrange for them to see the psychiatrist who is in the clinic one day a week.”
One of her encounters soon illustrated that ethos perfectly. Lying on one of the beds was a 74-year-old widower with late-stage cancer who appeared to be in a lot of pain, accompanied by his worried son. Shyni sat on the bed and, speaking gently in Malayalam, she managed to put them both at ease, even coaxing brief smiles. After checking his records, she swiftly set up a morphine drip to ease his physical discomfort, knowing there was more to uncover.
The man was distressed, and it wasn’t about the pain. Shyni perched on the bed again, with her hand resting gently on his knee. That’s when he blurted out that he didn’t want to leave his own home, but his daughter-in-law was insisting he should move in with her and his son to be cared for.
“He is struggling emotionally and what he wishes is important. If he wants to stay at home, then we can arrange that. We can put him on an end-of-life plan and provide homecare with 24-hour cover, as well as educate his relatives to help care for him when they can,” explained Shyni, rushing off to confirm with one of the doctors and make the necessary arrangements.
Despite the crowded space, the lack of privacy, the rising heat and the important decisions being made, the pervading atmosphere was one of calm, diligence, and patience that would continue through to 4.30pm when the queue outside was gone, but only until the next morning.
Some of the patients seen during the session I witnessed here were admitted to the institute’s inpatient unit, my next stop.
In the corridor of the Institute’s inpatient unit, a three-year-old girl ran round and round in circles, laughing as she played chase with her elder brother, oblivious to the significant family event unfolding nearby. Yards away on one of the wards, her anxious parents sat by grandfather Babu’s bedside, counting his big rasping breaths. A cluster of close relatives sat on a ledge outside the room, chatting in hushed tones, sipping drinks, sharing snacks, and keeping a watchful eye on the children.
Large groups gathering to say goodbye is nothing unusual in this place where the end of life is an everyday occurrence. For Dr Ashna, it was a top priority on her rounds to reassure the family that they were witnessing the natural process of dying and that Babu was not in any pain or discomfort. By evening he would be gone.
“It’s distressing for the family and the staff more than the patient,” Ashna explained later. “He will not be so aware of the impression he is giving.”
There are 30 beds in the unit, grouped in wards of three cubicles each with a patient bed, a put-you-up for visitors and a cabinet for belongings, but they are rarely more than half occupied to keep things manageable. Like St Luke’s at Turnchapel, the unit is generally reserved for the most complex of cases, patients needing special pain or symptom management or those who have no family to support them at home at the end of life. The unit also provides regular respite care for those living with life limiting illnesses and injuries.
Turnover can be rapid. When Ashna came on duty at 9am after a few days away, almost every one of the 12 inpatients was unknown to her. Care coordinator Meena, a calm and reassuring presence, updated her on all the new arrivals, mostly referred from the onsite outpatient clinic or the nearby Medical College Hospital, and they talked in detail through each person’s clinical notes together.
As the two women set out to visit patients, a trail of six student doctors and visiting clinicians tagged along, ready to look and learn, confirming the institute’s commitment to sharing knowledge and expertise through specialist education.
Among them, Dr Dum Kumari from Green Pastures NGO Hospital in Nepal in the Himalayas was there with a colleague for ten days as a hands-on element of IPM’s specialist National Fellowship course for clinicians.
“I’m very interested in palliative care, but the concept is so new in Nepal and there’s huge potential for development,” she said. “We have an Australian palliative specialist at the hospital who has encouraged us to take the course, and it’s been excellent.”
We trailed from bed to bed, patient to patient – several in the late stages of cancer – witnessing Ashna’s purposeful and thoughtful engagement and Meena’s motherly understanding, making sure everything was being done for each person to be as content and comfortable as possible, and answering their loved ones’ questions.
As the round drew to a close, a young woman arrived with a baby on her hip to take her husband back to Assam in the north of India. The 37-year-old labourer had been working on a construction site in Kozhikode, sending all his earnings back to his family, when he became very sick and was given a terminal diagnosis. His wife had left their three other children with relatives to accompany him on his final journey home.
I checked to see who else had a tear in their eye and it was universal. Death may be normal here, but people’s stories pull on the heartstrings of the most seasoned professionals, just as they do at St Luke’s.
As a charity we know well that making this kind of care available, free of charge for all, relies on the loyal support and goodwill of an army of fundraisers and volunteers. We’ll meet some of IPM’s recruits and discover how education is a top priority in the final part of this series, which you can read here.