First, we see a man who has come to the Douleurs Sans Frontières as an emergency. His pain is poorly controlled. He was last seen a fortnight ago. His wife tips out the plastic bags containing his medications.
The nurse and doctor count them carefully – it transpires he has been taking his immediate-release morphine in place of controlled-release. This is easily rectified. He also has “coquet” – french for “hiccups”. Again, a tweak of his antiemetics and he is sorted. He leaves with his wife, smiling.
Next, I am at the CCCA, the Cambodian Catholic Care Association. It is a 15 bedded unit, originally established to care for people dying with AIDS. More recently the incidence of AIDS has begun to reduce (and in response, so too have the NGO support for screening programmes…so this may not be the end of that story). Now the CCCA cares for people with a range of conditions, both adults and children.
Today we have a full schedule of people to review. The CCCA clinical team comprises two full-time doctors, three nurses and a few student nurses. The charity is funded by a Catholic society in Italy, and the hospice has an Italian feel to it. A bright courtyard leads to a veranda, tiled in white, with large wooden doors that open on to a spacious reception room.
The room is filled with patients and relatives waiting to be reviewed. Some are resident at the hospice, others have come from the provinces. Unlike DSF, the CCCA are able to provide domiciliary support to the more rural areas of Cambodia and spends alternate weeks in three different provinces.
This means, however, that patients living in rural areas can only expect a domiciliary visit once a month. For those with unstable symptoms, this clinic offers an opportunity for symptoms to be reviewed – again, by proxy – by a family member attending if the patient is too unwell.
The first two are new patients in the hospice. The first is a smiling man who appears to be in his early sixties. During the consultation we discover he is 82. The Cambodian nurses laugh and smile a lot at this, and when he tries to remember how many great-grandchildren he has. (He thinks it is around fifty but can’t be sure.) The doctor tells me that is is very unusual to see an elderly Cambodian person but when they do appear, they are usually very, very strong people. He is no exception.
Diagnosed with inoperable tongue cancer the previous year, he has been in pain for several months, having only been given paracetamol at the hospital. When asked about the intensity of his pain, he says “tik-tik”. This means “just a little bit” and I have heard it said a lot by patients. His wife disagrees and scolds him softly. Eventually he admits that the pain is bad when he eats, and a discussion ensures about lidocaine, mouth care, and morphine.
The next patient has suspected oral cancer as well, but because he cannot open his mouth he has not been able to have a biopsy. Even if this had been possible, his family would not be able to afford any treatment. The CCCA are able to offer financial support to three people each month to have surgery, so there are difficult decisions to be made.
He is here at CCCA but does not want to die in Phnom Penh, he wishes to return to Kampot Province to be with his family.
When the French doctor asks the Cambodian doctor whether he is aware that he probably has cancer, she says no, but he does realise the seriousness of his condition. He is so thin that every rib protrudes, I can see his pulse and his slow, shallow breaths. He swallows with some difficulty, wincing.
In Khmer, there are very few words that patients use to describe pain, so often the doctors have to suggest, using similes, what the pain might feel like. Systematically, an assessment is taken. Does it feel like insects? Like fire? Like electricity? He taps his outstretched fingers against his head to indicate that it is like electricity. His hand then moves to point at his cheek, his chin, then down to his stomach, even his legs. This is “everywhere” pain.
Faustine tells me this is very common, and maybe a way to try and convey that the pain is very severe. His pain is not tik-tik. His mouth only opens a small amount, and his tongue is coated, cracked and bleeding. A plan is made and he is given a morphine tablet to see if this helps while we are here. Lidocaine, nystatin…the list is drawn up for his son, who listens closely. Next week his son will return on his behalf to report back on how his father has responded to these new medicines. It is a great responsibility, as it is unlikely that the doctors can review him directly for another month.
The incidence of head and neck cancer has greatly increased in recent years, as a consequence of smoking, chewing betel nut, and alcohol. There are also many cancers related to environmental pollution (the link gives an idea of the scale of the problem and its impact on public health more broadly).
Two children under the care of CCCA have metastatic osteosarcoma. One of them, a 12 year old boy, weighs only 22kg but is needing 360mg of morphine per day to control his pain.
Pollution is a significant problem. Ground deposits of cobalt contribute to background radiation, and the emissions from industry and traffic are big problems in the city. I have woken every morning coughing and I have only been here for four days. Further, the groundwater is heavily polluted with pesticides that are often brought in from neighbouring Vietnam – which has the highest incidence of cancer per population of anywhere in the world.
The piles of colourful vegetables that I have been admiring in the old market apparently contain dangerous levels of a range of carcinogenic chemicals, and these are further concentrated in meat and poultry. I am told that sea fish are the only properly safe food to eat here.
The last man we see is lying flat on the bed, one arm folded across his eyes, perspiring. He smiles weakly at us as we enter, carrying a plastic stall each. But he is not the patient. He has arrived here from a province in the west of Cambodia after a long journey and was feeling so unwell on arrival that the nurse has put him to bed.
He is the sole carer for his wife who has metastatic breast cancer, and he is having difficulties balancing work – he is a labourer – and care. The couple have financial difficulties and his hours are long. We piece together the history and discover that she is sleeping for most of the time and whenever awake she is in extreme pain. The team amend her prescription and dispense the medications into small bags labelled with instructions, and discuss with him how he might encourage support from other members of his family to enable him to have some respite. A domiciliary visit is scheduled for the following week, approximately three hours away.
I am humbled by the tireless work of these doctors and nurses. For all of Cambodia there are just four doctors with palliative care qualifications, and DSF and CCCA are the only palliative care services that exist – both are outside government provision and rely entirely on donations.
There are profound needs here, to increase the accessibility of morphine, to challenge the unregulated prescribing of sub-therapeutic and potentially harmful chemotherapies, and to expand domiciliary provision of basic symptom advice.
The clinical work is not complex here. The priority for the vast majority of these patients is basic pain control, closely followed by financial concerns. Some staff believe that until pain is controlled and they feel financially secure, patients and families do not benefit from “talking about feelings.” Maslow, again.
Faustine puts it like this: “so, we can talk and talk for one hour or maybe more about this and that and how there is no money and no work and the children will have nothing when they die and then what? All that talk, and there will still be no money.”
So, the team do what they can, which is to control the pain. The rest they know they cannot change, but at least this is something towards easing suffering.
PS. I have never loved the NHS more than now. Joni Mitchell was right when she observed “don’t it always seem to go, that you don’t know what you’ve got til it’s gone.”
This article was first published on Laura’s own blog (Impermanence – Reflections on compassion in end of life care) and republished here with permission.