November 7, 2002
Chronicle of an aids hospice
Text after translation and first editing process ( with the kind help of Ginge and Hervé).
There is in Thailand a terrible place. There, I have followed the death of more than fifteen hundred Thais the majority of whom had not reached 35 years old. The place merits witnessing! After two years of observation in this survey laboratory of cultural behaviour I love Thai culture more than ever and I would still prefer to be Thai a thousand times more than farang. But this doesn't stop my sharp farang tongue from voicing some criticisms.
Maybe you will refuse to believe me and maybe some of you will try to minimize the reality that I describe. Go and visit "www.aids-hospice.com" and you won't dare utter another word about fantasy! As you look remember that all those photos were collected in only a few months. Any doctor will be able to confirm to you that these photos not only depict AIDS, but also a "state of medical abandonment".
The question here is not of the government or the Ministry of Health. With regards AIDS, they have made remarkable work.
Wat Phrabatnamphu in short
This institution is a hospice for the HIV positive. It is also a temple. The place looks a little like a holiday camp, until you notice the numerous chimneys and you begin to think about something else
And when you hear the loudspeakers saying: " Mr Somboun is required at crematorium No. 7 ", you are back to reality. About 550 patients die there each year. There are weeks without death and there have been some horrifying days with 11 deaths in just a few hours... The age of the patients tends to oscillate between 25 and 35 years. The under than 20s are rather rare as are the over 45s. A few more boys than girls. Fewer than one in ten will receive a visit from relative.
Wat Phrabatnamphu is also an information point for AIDS education. Every year, students, soldiers and donors, by the scores of thousands, pass through its wards to gape at the devastation of this terrible curse of contemporary Thailand.
He was very soft, shy too, he was already very weak when admitted. Within a few days he was capable of staying out of the agony ward. But already too skinny to be able to think about a new life he was only waiting in the village of the death. Sometimes, he stole money of an absent-minded patient to buy a Pepsi until his stealing became known. Then he guessed that he would probably be expelled from the village. He preferred to climb to the third floor and to plunge headfirst down to the concrete floor below. He died about two hours later. When I grasped his head, the bkkpst of the skull moved in the bag of skin that still served as his head.
No! Don't tell me that the manager should be more lenient! Do you know what it is to manage a community of those condemned to death? With the women it is usually easy, but with the men it is another story. Some "inhabitants" are former addicts, and we have dealt with racketeers that extorted money from paralysed patients, threatening them with blows. It is people from every walk of life that contract HIV
Families come to the hospice to throw away a son or a daughter, as others would send an old fridge to the scrap merchant. Most of those families won't even come back for funeral ceremony. Sometimes, it is the children who come to throw a mother who doesn't understand how this misfortune has suddenly destroyed her life.
Those families are ashamed of their patients. Those families are afraid of their patients. There is also sometimes pure spitefulness. I saw a mother who was thrown here but refused to die. After three weeks, the impatient family suddenly reappeared in the ward. After a quarter of hour of strained smiles and crocodile tears, the family left with a wad of papers signed by the patient to allow the sale of her goods before her death. Then the family never returned.
The medical profession
The medical profession in Thailand is technically excellent, it is well known. But the ethical concern is not distributed homogeneously . Among the doctors of Thailand there are both the saints who enliven high places of charity and there are the cynics who don't like the poor and particularly the poor HIV positive. Sometimes, in the same hospital one will find saints and cynics. There the patients are going with a particular anxiety, as they would go to the casino.
A crying mother of a 23 year old HIV positive boy told me: "They" asked the son to sit down in his stretcher, which he was unable to do due to intense abdominal pain. Then "they" put some paracetamol in a sachet and gave it to the mother saying: "Two tablets four times per day. You can go back home."
Gradually I have come to understand why it is that patients who have been refused access to hospitals and are sent to die can sometimes survive for months or even years. Some require nothing more than some ampicillin or other medicine available for as little as 3 baths a tablet.
A hospice is not a hospital. It is why there are no labs or X-rays in Wat Phrabatnamphu. Yet we receive patients who should not be considered as "dying ", thus sometimes I refer them to local hospitals.
I had to reinvent a medicine without lab, without X-rays, without specialists, without morphine. No! I am not calibrated for such a function! I am not the good doctor that the patients merit, and I know it. But whilst we still receive patients that hospitals don't want they should be content with me! I refuse to take care of those who can still walk, so as to try and persuade them to go and get treatment somewhere more appropriate.
When we were brought this child, she only had five kilograms of tendons, skin and bkkpst. She was already one year and three months old. She wasn't expected to last the fortnight. She crapped blood, didn't even have strength to suckle. Her shrunken skin made us believe that inside, her liver and her kidneys could only be dry cores. A Chinese had already offered a quite pretty small coffin worked and colourful which had been dragged there by the door.
Yet for a long time she didn't accept to die. Eventually we realised that this baby wasn't yet suffering from AIDS related diseases but a milk malabsorption problem. I forbade the normal milk, and a miracle occured. She gained weight each day.
Patients doesn't necessarily come because hospitals or relatives refuse to take care. Somsak is a patient who suffers from a spectacular non contagious psoriasis. Somsak is liked by its family. Somsak has always been welcomed to the hospital of his province. But Somsak came in the wat Phrabatnamphu because his skin soon made it clear to the whole village that he has contracted AIDS. Since that time, no one has dared to eat to the restaurant held by his family.
I am tired of these NGOs that come with generous plans and run away when they understand that nothing will be easy, that they will never hold the ultimate power, that officially the hospice will always be "tolerated" more than "authorised "... They find good formulas to explain that they don't want to help, and then they run away.
And what about state support?
I don't know anything of the financial realities of at Phrabatnamphu. We are a "traditional" management, not a "state-controlled management". Wat Phrabatnamphu has an official "foundation" but money tends to come in by other ways. The hospice lives from the "Taam Boon" (literally "make merit" meaning donation for religious purposes). It is the people's generosity that gives financial support to the monk. In answer, the monk spends money for his hospice "as a father", in the way he likes. With his patients who come from public and private hospitals, he certainly has some arguments to defend his manner of working. Me, I just see that nobody does more than that monk for the dying . I also see that he works, very hard ! He doesn't drink Champagne, don't bathe in sumptuous private swimming pools, don't roll in a prestigious limousine as some would do I like this monk!
The generosity of the Thais merit some comments.
Often, the generosity comes without compassion. Westerners never understand this paradox.
The poor and the rich come to give the quarter of their wage and then enter the ward of the dying as they would in a zoo.
The Westerners on the other hand feel guilty only by daring to go in the ward and then they go back home full of emotions and convicted to nightmares or even guilt at letting the world continue in this misery. Some will come back as volunteers. But they leave us with 1000 bahts or less on the table because usually they are less generous
For over two years I've worked there continually as volunteer. My farang compassion is less burning than it was. I worried about that with a friend who is also interested in the mystery of the Thai culture. He ended up answering me: "But my dear, the Thais make fun of your compassion. What need do they have of your tears? Good medicines and expertise, that is what they want from you!"
I go to a patient's bedside and ask him if he wants something. He answers me: "Touch me ". I touch him, I tighten my hold. He has moist eyes.
The Thai response to HIV is incredible. They all know that AIDS isn't transmitted by touch! I don't understand their relationship with the knowledge. It is the same problem for prevention: they all know what is necessary to avoid catching this illness. The whole of Thailand knows, even in the most retired corners of the mountains. Because of this curious relationship to knowledge I am not an optimist for the new antiviral therapies. I have observed so many patients who die of tuberculosis because in spite of multiple warnings, they had stopped treating themselves as soon as they felt better. By that way Thailand will organise its own resistance to HIV therapies...
The human resources
The assistant-nurses are the hearth of care in a hospice. The job is particularly thankless: they change pampers, prepare dead bodies for funerals, wash vomit, manage confused and aggressive mentally sick patients, clean wounds of pus and blood, deal with dangerous contagious diseases (tuberculosis, not to forget AIDS itself...). Just to go into the wards full of microbes is enough to make you feel tired, before even starting work
We have a team of 10 assistant nurses to take care of 70 dying! They are tired. Most work without social security 12 hours per day with only 1 day off per week. They receive less money and less respect than workers in an office because they are considered less qualified. Of course the productivity is low. A few exceptional girls are wasting their health
If I speak about that with them, they say they can't work less because they need money. One must sustain her family, another would like to get involved later in complementary studies, the third thinks about the future of her baby. They all try to reach the doorstep of the six thousand five hundred baht end of the month.
If I speak about that with the manager, he explains to me that the hospice really doesn't have the choice: the staff are paid as other workers of the same level in the country and they have some advantage by grants in nature. The hospice cannot offer true social security in the way the state can.
In practice it means merely that there are not enough candidates for this kind of work.
We absolutely need a new kind of donor. His mission will be thankless and won't leave traces engraved in a wall: to find and to offer a team of ten extra assistant-nurses paid by him 6500 baht per month for a forty working hour week. It's not just money that is required, but a team of people! That donor will also have to give a supplement for existing helps-nurses so they can also receive the same 6500 baht when "only" working 8 hours not 12 hours a day in such hell!
I would like it so much that it would be possible one day to say sometimes to a worker with difficult menstruation: "Today is off; you should rest to be strong enough to fight the microbes of the ward".
And the doctor?
Officially, there is no doctor. Unofficially, there is me, your servant, but as it is unofficial, there is no morphine in the wards. In addition, your servant showed quite a lot of weakness these last months: he caught tuberculosis first and then a depression. Now he work only few hours a day... Yes, a farang it is not as strong as a Thai..
The problem is that doctors don't accept to work without X-rays or a lab in a place where a mistake of choice nearly always results in death. The medical bets to assume are terrifying and daily.
Fortunately, there is an old help nurse who can find the ways out off these complicated symptoms. There is also a few young help nurse who is starting to understand the main things These last few months there is even one qualified nurse! She is excellent and make "medical bets" for half of the dying patients. I saw a lot of nurses pass through these two last years. A nurse's arrival (that will ipso facto be my boss because officially I am only a volunteer) is not anymore something that I systematically delight!)
Tears and jokes
While I examined a patient, I looked to another one who was simply dying. He had a few people at his bedside: a French volunteer, a Japanese volunteer and a young Thai trainee who just arrived the same day. When he reached the time to die, the Japanese took her handkerchief to cry. The French restrained his tears discreetly by pride but he didn't look comfortable! And the Thai was making a joke.
A Western visitor asks me to take an interest in a depressive patient who had cried before him. I made him speak and he cried a second time, for some valid reasons, I admit. Because I have a stone heart by habit, I got quickly tired of the conversation and used the pretext of the urgent needs of another patient to leave him. Another Westerner came to take over and the patient cries a third time Finally, a Thai help nurse who had observed all from afar comes to his bedside when he was again alone tried to make him laugh. She succeeds
Middle of the ward, a radio sang: "Happy birthday to you! ". One of the fated patients that knew some words in English sang: " Happy dead day to you ". Other patients sang with him. And they laughed, laughed
The mystery of Thais culture fascinate me.
Yves Wery MD
(Translation by Herve and Ginge)
paul yves wery - firstname.lastname@example.org