“And lo, in that house of misery, a lady with a lamp I see” – from “Santa Filamena”, by Henry Longfellow
For some reason, I woke up this morning thinking about Heidegger. This doesn’t happen to me very often, I put it down to extreme jet lag. Cambodia is 14 hours ahead of California, so although my journey here took around 18 hours, I arrived over a day after I left. I still haven’t worked out the implications of this for my longer-term prognosis.
Anyway, Heidegger was on my mind, and his idea about human becoming. This notion is a little opaque in Heidegger’s original words, but Rosemarie Parse presented an alternative model of nursing in 1981 which adopted the idea of human-becoming. The theory centres around three themes: meaning, rhythmicity and transcendence, each of which is permeated by four postulates – illimitability, paradox, freedom and mystery. Parse’s theories require that nurses focus on quality of life as it is experienced and lived by people and their families. The goals, according to Parse, are to accompany the person on their journey which is acknowledged to be ever-changing, and in which the person is continually making choices about how to live and how to interpret their living. In constant interaction with their environment, the person creates meaning through their interaction with others and with the world around them. This meaning is in a state of flux and the world is created by the person just as the person is created by the world.
I had no time to think further on the matter – I was due to be at the offices of Douleurs Sans Frontieres by 8am. I arrive very early (I realised yesterday that although some streets and numbered, and some houses, these numbers are not sequential. Some streets have both a number and a name). I watch the streets from the third floor as the roads and alleyways gradually fill with sounds and smells. A woman is sweeping a tiny tiled area at the front of her apartment with a palm brush. There is a shrine tucked between two small potted trees and a fronted cabinet of dusty cans of drink, a small symmetrical pile of spiky fruit. Two plastic chairs are placed beside the cabinet. She will spend today selling her produce from the front of her apartment, as will many others. There are shrines everywhere, with pots of gravel and clusters of burning incense. Around 95% of Cambodia’s population are Theravada Buddhists. Nearly all Cambodian men over the age of sixteen spend some time as bhikku’s; joining and leaving a sangha is a matter of choice and is very easy. Spending just one year as a bhikku is considered to bring honour to ones’ parents. Monks provide the lay people with opportunities to gain merit for reincarnation, although in recent years this has been fraught with corruption as this merit has become synonymous with money. Buddhism exists alongside other belief systems including animism and Brahman practices.
Belief systems strongly influence the experience of dying with cancer. For example, beef is considered to be a good food for growing strong tissue, but for many Cambodian’s it is presumed that this feeds the tumour as the meaning of tissue and tumour are similar. It is therefore common to find terminally ill people being fed only on rice soup as it is believed that this is the purest and safest food. Many also take traditional medications for their cancers. On the whiteboard in the DSF office there are figures representing monthly activity – some of these are people they strongly suspect will return to hospital with problems, who have perhaps decided to try traditional medicine first.
The hospital is the source of the majority of patients supported by DSF. They are identified in the Oncology Unit at Calmette and Khmer Soviet hospitals, and once the team have met them, they are followed up when they are home again. Home is where most people wish to be. Here, the decision about chemotherapy is rarely questioned by clinicians, patients or families. There is no free healthcare and families must fund treatments themselves. This often means that they can only afford a sub-therapeutic dose of chemotherapy, and often they stop treatment when they run out of money. One patient we saw this morning in the hospital had undergone two cycles of six before having to discontinue her treatment.
For people seen by DSF, there are five categories of payment. On the first consultation, a social assessment is made. This includes factors such as income, number of dependents, the type of house, employment status and so on. The wealthiest are category “A” – these number around 10% of consultations. Category A patients are charged $40 per week and this includes medication and consultation, regardless of the quantity of medication that is required. There are a further four categories along a sliding scale. The vast majority of patients are in the “E” category, and there is no charge for service for them. The income from patient payment is around $1600 per month. The budget for drugs alone is twice this, and then there are the costs of staffing the service and other overheads such as the office and the single vehicle used by DSF. “This revenue covers 15% of budget”. The system is flexible, and if they cannot pay on one visit that is okay, perhaps next visit they can pay more. If more people accessed the service who were able to pay, it would help to balance things out, but in general those people who are better able to afford care choose instead to spend their money on curative treatments, hydration and parenteral nutrition.
We visit the hospital first. The rooms have six beds and an extra camp bed has been put up in the centre of the room for an extra patient. Family members camp out in the hospital grounds. There are no healthcare assistants – all “care” such as washing and feeding is done by family members. I ask what would happen if a person came here with no family, and am told “there is no such thing, everyone has family here”.
DSFs role in the hospital is twofold; firstly, they visit to advise and support the attending clinical team. Secondly they use this as a means of identifying those patients who require follow-up once they are in the community. There are no other community services.
In hospital, the medication side of things is relatively straightforward in this resource-poor country. They have one strength of injectable morphine available – 10mg/1ml – so all prescriptions are written as number of vials rather than dose in milligrams. They do not have access to transdermal preparations, syringe drivers or sublingual preparations. When someone becomes to weak to swallow, they will crush sevredol tablets and give them with some fluid. It is usually very quick from the time that a person becomes this weak and the time that they die – probably as a consequence of dehydration, debility and the extreme heat – but this means that there are rarely any problems with terminal respiratory secretions. There are different problems with those who are wealthy, who often receive hydration and chemotherapy until death, and arguably have increased suffering as a consequence.
The £1800 I raised will pay for around three weeks of basic medications here – this is the priority. The aim of the team is to have a totally Cambodian clinical team providing the service – they are well on the way, with Leng, a newly qualified doctor, having just joined the team along with two Cambodian nurses. There is no formal palliative care content on the medical curriculum, so Leng was taught “on the job” using the World Palliative Care Associations palliative medicine textbook. After three months of this she was able to consult independently.
We see a man in his forties whose bed is surrounded by family. A half-full bowl of soup sits on an upturned bucket beside him. He is hiccupping, his abdomen distended. He lifts his shirt to show me his surgical scar. He had a pelvic tumour, diagnosed when he came to the hospital in severe pain. He also has multiple vertebral metastases, lymphedema in his legs and worrying signs of spinal cord compression. There is little radiotherapy that is given with an explicitly palliative intent – although the majority of patients are palliative at diagnosis. A conservative estimate is 60%, although in reality one doctor told me that her colleague had only ever had two patients who he considered to be in remission.
In the afternoon, we set off in the DSF car to visit a patient at home – Faustine, on the left, is a French palliative care doctor. Neath is a Khmer translator and Lida is a nurse.
Driving is .. erm …interesting here…Faustine tells me that the team decided against using mopeds for visits despite their affordability – because of the significant dangers posed by the busy streets and lack of traffic rules.
We arrive eventually at a village nestled between the Mekong and the Tonlesap rivers. The house is hard to find, mainly because it has no address. We telephone her daughter when we are nearby and she comes to meet us on a scooter to guide us to the home. It is a two-floor wooden construction, open to the air. The family are outside on a wooden platform; one grandchild sleeps on the platform, a toddler rests in a hammock suspended from the ceiling.
The patient, a woman in her fifties, has been referred by “word of mouth” to the team. Diagnosed two years ago with uterine cancer, she now has metastases to her clavicle and significant problems with pain. As with many patients, she stopped chemotherapy because the family could no longer afford it and was discharged from oncology services. Currently, a minority of patients are referred in this way, but Faustine is hopeful that this can increase as it provides another means of picking up patients in need who may not attend hospital or be lost to follow up. She has a large swelling on her clavicle – a metastasis from a uterine primary cancer. It is affecting her voice and her breathing, and she has developed numbness in her right arm. There is no option for palliative radiotherapy. She says she feels breathless all of the time. Sometimes the swelling obstructs her swallowing as well. Faustine explains that she can use the sevredol for her breathlessness as well. She is tachycardic and tachypnoeic.
The team carry a bag of medications. Supplies are scarce and sometimes decisions need to be made based more on practicalities and cost than clinical evidence. For example, I am told about a patient with cranial metastases who needed to take twelve prednisolone tablets because that was the cheapest way to provide the therapeutic dose of corticosteroid. Medications are purchased from overseas as this is around ten times cheaper than buying from local pharmacists. There are also significant problems in regulation and quality of local drugs, and particular concerns about opioids.
Faustine is hopeful that next year DSF will be able to access transdermal preparations of opioids – they see patients around once a week and it is very rare for them to be managed with subcutaneous medications. On her wish list is the availability of affordable sublingual preparations – at present they crush sevredol. Diazepam is the only anxiolytic used, and only orally. The rectal route is rarely used due to cultural barriers. They do not use midazlolam although they have it in the emergency box. There would be little purpose in administering it in the community on account of its’ rapid half-life.
When the visit is finished, her family thank the team and we are all given a bottle of water. She is smiling. As we leave, four children are playing in the mud by the river. They shout “hello! hello!” loudly as we pass, and jump up and down, grinning. The patient and her family are waving goodbye, smiling broadly. They are so grateful for the visit, and for the advice – there was no complex palliative care here, but potentially an enormous difference made by a single intervention.
We bump and shake our way back to the office, and I leave to find a cafe to write my blog and digest some of what I have observed today. I am conscious that today has sparked in me an understanding of global palliative care that I had never grasped before, other than by proxy through marking assignments by staff at Nairobi Hospice. Here, all “care” is provided by the family and what is lacking is the technology and pharmacological interventions to manage even fairly simple pain. Yet nobody dies alone. And across the pond in the United States, the situation is in some ways the reverse. The priorities there in palliative care are to tackle social isolation and psychological distress, whilst infusions of expensive opioids are titrated milligram by milligram to achieve optimal comfort. I am too energised to sleep. I’m off to walk the crazy streets of Phnom Penh.
Read more about the work of DSF in a recent e-hospice article by Axelle Coumert, Head of Project