Life at death's door
November 7, 2002 Text after the final editing process. "Outlook" section)
There is, in Thailand, a terrible place. At this place, I have followed the deaths of more than 1,500 Thais, the majority of whom had yet to reach 35 years of age. After two years of observation in this laboratory of cultural behaviour, I love Thai culture more than ever and I would still prefer to be Thai a thousand times more than to be what I am, a 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 minimise the reality that I describe. Go and visit the Web site www.aids-hospice.com and you won't utter another word about fantasy!
As you look, remember that all the photographs shown were collected over a period of just a few months. Any doctor will confirm to you that these photos depict not just Aids, but a ``state of medical abandonment''.
The issue here is not one of government or the Ministry of Health. With regards to Aids, they have done remarkable work.
WAT PHRABATNAMPHU, IN BRIEF
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. When you hear over the loudspeakers: ``Mr Somboon is required at crematorium No 7,'' you are back to reality.
About 550 patients die here each year. There have been weeks without a death and there have been horrifying days with up to 11 deaths in just a few hours. The age of the patients is mainly from between 25 and 35 years old. There are a few more males than females. Fewer than one patient in 10 will receive a visit from a relative.
Patients admitted here receive basic care. Some die the day they arrive. Some survive a year or even more. Those who are able to eat, speak and work are lodged for free in small bungalows that surround the two ``agony wards'' for the very sick. The bungalow residents must respect the strict rules inspired by the monastic life.
The strong man of the village, the manager, a layman, holds a hand of iron over this small world of the desperate, where drunkenness is as much a temptation as the search for wisdom. Here, former junkies and alcoholics are compelled to become gentlemen.
Wat Phrabatnamphu is also an information point for Aids education. Every year, thousands of students, soldiers and donors pass through its wards to gape at the devastation caused by this terrible curse of contemporary Thailand.
The patient was very shy and weak when admitted. Within a few days he was strong enough to stay out of the agony ward, but too skinny to be able to think about a new life. Sometimes, he stole money from 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 chose to climb to the third floor and to plunge headfirst to the concrete ground below. He died about two hours later. When I grasped his head, the bkkpt 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 with patients! 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. We have dealt with racketeers who extorted money from paralysed patients by threatening them with physical violence. Remember, people from every walk of life 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. Sometimes people come to throw away a mother who doesn't understand how this misfortune has suddenly destroyed her life. Most of those families don't even come back for the funeral ceremony.
I feel much tenderness for the women who come to die in our hospice. The great majority did not commit any imprudence or disloyalty. They die because they have trusted a husband who didn't deserve that trust.
Those families are ashamed of their patients. Sometimes there is pure spite. One mother was thrown in here but refused to die. After three weeks, the impatient family reappeared. After a quarter of an hour of strained smiles and crocodile tears, the family left with a wad of papers, signed by the patient, allowing the sale of her goods before her death. They never returned.
The patient sank into a depression, the depth of which one rarely sees. She began by speaking less, eating less, staying longer in her bed. Then she regressed, assuming the reflexes of a baby and lying in the foetal position. Finally she stopped moving. Her eyes were elsewhere and one saw awful pain inside. She was a suffering statue. It was catalepsy. No fever, or tumour or pus. Only a deadly mental suffering.
THE MEDICAL PROFESSION
It is well known that the medical profession in Thailand is technically excellent. But concern over ethical issues is not always distributed homogeneously. Among the doctors of Thailand, there are both saints who enliven high places of charity and cynics who don't like the poor and particularly the poor who are HIV-positive.
A hospice is not a hospital. That is why there are no labs or x-rays at Wat Phrabatnamphu. Yet, we receive many patients who should not be considered as ``dying''. I refer these to local hospitals.
Some years ago such requests were by no means welcomed. Why should these hospitals have to admit the victims of unkindness at the hospitals of other provinces?
Some patients were admitted, others were returned to us with just the traditional sachet of paracetamol. One doctor never answered my letters, in order to make me understand that I made absurd demands. That was probably true, because never in my life have I seen such patients, even in Africa.
I had to invent a medicine practice without a lab, without X-rays, without specialists, without morphine. I am not made for this kind of work. I am not the good doctor that the patients deserve, and I know it.
But while we still receive patients that hospitals don't want, they will have to be content with me. I refuse to take care of those who can still walk. I still try and persuade them to go and get treatment somewhere more appropriate.
When we were presented with one 15-month old child, she was only five kilogrammes of tendons, skin and bkkpt. She wasn't expected to last longer than a fortnight. She didn't have the strength to suckle and she passed blood. Her shrivelled skin made us believe that her liver and kidneys could only be dry cores. A Chinese person had already offered a quite pretty, small, coffin for her. It had been left at the door.
Yet for a long time she didn't accept death. Eventually, we realised that this baby wasn't yet suffering from Aids-related diseases but had a milk malabsorption problem. I forbade the normal milk and a miracle occurred. She gained weight daily.
We were then afraid that the microbes infesting the ward would start to eat greedily at her. It was necessary that she leave the hospice if she were to remain strong. Where to go? Inquiries here and there lead finally to a German who helps HIV-positive children. It was agreed. The small girl left us! The same day, another baby entered the ward, and we began again ...
Patients don't necessarily come here because hospitals or relatives refuse to take care of them.
Somsak suffers from a spectacular non-contagious psoriasis. He is liked by his family. He has always been welcome at his provincial hospital. But he came to Wat Phrabatnamphu because his skin condition made it clear to his village that he had contracted Aids. Since then, no villager dared to eat at his family's restaurant.
I am tired of NGOs that come with generous plans and run away when they realise that nothing will be easy, that they will never hold ultimate power and that officially the hospice will always be ``tolerated'' more than ``authorised''.
Donors who can really make a difference don't interfere with the running, the philosophy or the look of the place and they are not afraid of making an effort.
A German businessman came to see the superior here and proposed that he take care of children entering the the hospice. He asked for nothing except permission _ permission to construct the houses for the children, permission to choose workers, permission to organise the distribution of medicines, permission to ...
His project has turned out well. The children are happy. Fewer die. They receive the best anti-HIV medicines, for which he takes the financial responsibility.
And what about state support?
Relations with the state are somewhat complex. The state promotes what Thailand should be and Wat Phrabatnamphu exists because Thailand is not yet what it should be. Shockingly ill patients still arrive each day from everywhere.
The state tolerates but at the same time does not really support the hospice. It's difficult to explain this kind of subtle compromise; it shows the extreme sense of nuance and diplomacy within Thai culture.
I don't know anything of the financial realities of Wat Phrabatnamphu. We have "traditional" rather than "state-controlled" management. Wat Phrabatnamphu has an official "foundation" but money tends to come in by other ways. The hospice lives from tam boon (donations for religious purposes). This is the generosity of the public.
In return, the monk, as "a father", spends money on his hospice as he sees fit.
The generosity of the Thais merits some comments.
I have dragged my boots around more than 30 countries and I remain convinced that Thailand is one of the most generous of all nations. It is a generosity, however, which requires that it be seen. Buddhism did not have, to my knowledge, a Jesus who recommended that the left hand ignores what the right hand gives.
Here, donors show themselves. They take take a lot of photos when they give. And if the donor is well known, the TV comes. Farangs are perhaps shocked but they are forced to recognise that such measures stimulate more generosity.
Often, the generosity comes without compassion. Westerners never understand this paradox. The poor and the rich come to give a quarter of their wage and then enter the ward of the dying as they would a zoo.
I was examining a patient. The door opened and a group came in. They stopped very near us and surrounded us with an unspeakable curiosity. The patient was already dead. He was naked. My fingers were on his prostate. The visitors didn't care.
Pity they may have had, but no compassion! When they pass through the ward, the Thais never cry for people that they don't know. They are never overtaken by an emotion strong enough to stop them from walking. If they don't carry on, it's because of disgust.
Westerners, on the other hand, feel guilty for even daring to go into the ward. Then they go home full of emotion, experiencing nightmares and guilt about letting the world continue in such misery. Some will come back as volunteers. But more often they leave us with donations of 1,000 baht or less because usually they are less generous ...
For over two years I've worked here continually as a volunteer. My farang compassion is burning less bright than it used to. I reflected about that with a friend who is also interested in the mystery of the Thai culture. He ended up saying to me: "But my dear, the Thais make fun of your compassion. What need have they for your tears? Good medicines and expertise, that is what they want from you!"
I go to a patient's bedside and ask if he wants something. He answers: "Touch me." I touch him. I tighten my hold. His eyes are moist.
I go to the bedside of an old patient. I examine her with naked hands. She begins to cry and says: "You dared touch me! Oh doctor! You dared touch me!"
I now touch the patients, touch them again, with both palms open. I don't use gloves unless prudence demands it. That is rare. (All volunteers catch scabies at one time or another. I caught it five times. But it is so easy to treat scabies!)
The Thai response to HIV is incredible. They know that Aids isn't transmitted by touch! I don't understand their relationship with this knowledge.
Because of this curious relationship with knowledge, I am not an optimist with regard to the new antiviral therapies.
Assistant nurses are the centre of a hospice. Their job is particularly thankless: they change nappies, prepare dead bodies for funerals, wash vomit, manage confused and aggressive mentally sick patients, clean pus and blood from wounds and deal with dangerous contagious diseases (tuberculosis as well as Aids).
Just to go into wards full of microbes is enough to make you feel tired, before you even start to work.
We have a team of 10 assistant nurses taking care of 70 dying patients. The nurses are tired. Most work without social security, 12 hours per day. They have only one day off a week. They receive less money and less respect than office workers because they are considered less qualified. Of course, 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 hard because they need the money. One young woman must support her family, another wants to study something related to this work later, a third is thinking about her baby's future. They all try to make sure that they earn 6,500 baht a month.
We absolutely need a new kind of donor. His or her mission will be thankless and won't be about plaques on a wall. The mission is to find and pay for a team of 10 extra assistant nurses, each to be paid 6,500 baht per month for a 40-hour working week.
That donor will also have to provide a supplement for the existing assistant nurses so that they too can earn 6,500 baht for "only" working eight hours rather than 12 hours a day in such hell!
AND THE DOCTOR?
Officially, there is no doctor. Unofficially, there is me, your servant. Since it is unofficial, there is, for example, no morphine in the wards. Also, your servant has been showing quite a lot of weakness in recent months _ first he caught tuberculosis, then a depression. Now he works for just a few hours a day. Yes, a farang is not as strong as a Thai.
The problem is that doctors won't work without a lab and X-ray machines in a place where a mistake in treatment nearly always results in death. The daily medical gambles are terrifying.
A patient arrives. He is choking. He has been refused admittance to a hospital in his province. He is choking. Is this PCP or pneumonia? He has an atrocious migraine. Toxo or crypto? One doesn't want to make mistake when one knows that some patients can survive a year with the right, often cheap, treatment!
Fortunately, there is an old help nurse who can help diagnose patients' complicated symptoms. There is also a young nurse who is starting to understand the main issues and in recent months, there has even been an excellent qualified nurse.
TEARS AND JOKES
While I was examining a patient, I looked over at another man who was dying. He had a few people at his bedside _ a French volunteer, a Japanese volunteer and a young Thai trainee who had just arrived the same day. When it was almost the patient's time to die, the Japanese woman cried into a handkerchief. The Frenchman held back tears. And the Thai started to make jokes.
Another story: A Western visitor asked me to take an interest in a depressive patient who had been in tears. I got the patient to speak and he cried again, for valid reasons I admit. Because I have a stone heart by habit, I quickly got tired of the conversation and left him, under the pretext of having to attend to the urgent needs of another patient. Another Westerner came over and the patient cried again. Finally, a Thai assistant nurse who had been watching all this went over to his bedside _ and succeeded in making him laugh.
One time, a radio sitting in middle of the ward rang out: "Happy birthday to you!" A patient who knew some words in English sang: "Happy dead day to you!" Other patients sang with him. And they laughed and laughed ...
The mystery of Thai culture continues to fascinate me.
Yves Wery MD
paul yves wery - firstname.lastname@example.org