1.) The Timekeeper (Part one.)
One evening I approached a patient that I hadn't had contact with before. Why I was drawn to him on this particular evening, on this particular day, still eludes me. A smile and an introduction, I sat with him quietly for a while. The evening is always a quieter time in the hospice, without the distractions of daily routines patients are often deeply contemplative. As I was still a comparative stranger to this patient I just sat on the edge of his bed, comfortable with silence and just 'being with' him allowing trust to evolve.
A patient's only personal possessions are placed on their bedside locker, and can often provide insight about the patient; what they value, and clues to their life before illness. Stripped of dignity and individuality in the hospice, the locker surface becomes an intensely personal and important space.
The two most highly valued possessions of this patient were: an alarm clock set religiously everyday; and a calendar displayed prominently on the bedside locker, with each day accurately and meticulously crossed off. These items were quite unique, and in stark contrast to other patients who have little desire or motivation for any comprehension of time.
The significance of 'time' for this patient was a consequence of his medication regime and the demands of adherence. Also I felt 'time' had a psychological importance. There was a sense of security for the patient in his knowledge of time, date, day etc, a part of being grounded, orientated, and connected with the world.
In the hospice where deaths are a daily occurrence, time has a different quality and nature; being more precarious and precious. Most patients are indifferent to the passing hours and days perceiving their time has already been lost, and awaiting only the final end. Thus, this 'Timekeeper's' energy and determination to maintain awareness and conception of time was unique, but also essential to his survival. One of the few patients admitted to the hospice on antiretroviral drugs, his regime required twice daily medication that he self-administered. Unfortunately because the hospice does not permit antiretroviral medication, he was totally alone in his responsibility acquiring no assistance, support or timely reminders from the nursing staff. His self-reliance was essential, and his days centred on the timing of his medication; the alarm clock and calendar his only tools.
While sitting with him, I noticed a discrepancy in his time keeping. Carefully and deliberately, each day that had passed was crossed on the calendar until the present day- the 24 th . However, he was exactly a month behind. I contemplated this to myself for a while, and deliberated on whether to inform him and how to do this. I was aware of the significance to him of time, and the potential shattering of his feelings of personal security and control as a result of highlighting his error.
Softly and gently I spoke to him and told him it was not February as he had thought, but the month of March. I passed him the calendar, allowing him to turn the page himself and regain some control. Again I practised 'being with' by giving him time to absorb and assimilate this information, the new 'time', and space to process it. To be told that something that you wholeheartedly believed to be reliable, accurate and true and on which your health and life depends is entirely mistaken, can understandably engender feelings of insecurity, fear and shock.
As he composed himself taking the calendar and turning the page, he asked me if the day was correct. "Of course," I assured him and encouraged him in the accuracy of the day, it was indeed the 24 th . Placing the calendar back on his bedside table he continued starring at the new page and new month as if to familiarise himself with it. He then turned to me and said, "If it is true that it is March not February, and if it is indeed the 24 th ; then today is my birthday!"
True story of experience as a volunteer in an AIDS hospice in Thailand.
(http. //www.Aids-hospice.com )
2.) Timekeeper (Part two)
We often lament the strict adherence demands of antiretroviral medication. Claiming for example that a twice a day requirement, 12 hours apart is restrictive and inflexible. Failures to maintain ARV medication regimes are common. I am not disputing the demands of any medication regime, but these complaints can be seen as a privilege. In the developed world, we are complacent about time and the ability to understand it. Would you, for example, consider asking a patient how they understand and comprehend time before you explained the requirements of their medication regime?
Consider then an HIV+ child in need of medication, who lives in a rural village in Cambodia. Assuming medication is available, who will provide the necessary medication at the right time for this child? Many caregivers are unable to read or write, unable to read a calendar, or tell the time. Sometimes they have had no education, and so have no comprehension of the days of the week, months, hours etc. '12 hours apart' is an entirely alien concept. Time is determined by the position of the sun. Daily life and daily routines are set by the availability of sunlight, which is a practical and suitable method for agarian and farming life. Clocks and watches are unfamiliar, rarely understood and almost seldom owned.
How then are you going to teach the child's caregiver how to give the medication necessary for the child's survival? Essentially one has to teach a whole different way of calculating time and why it is important, and then introduce the concept of 'twice a day'. A few of the village caregivers and parents are able to read numbers, and so a digital watch can be used. Others can learn analogue time, and are therefore able to use an analogue watch. One woman who as a single mother had no family support, also had no comprehension of 'time', and no experience of a watch or clock, but her child desperately needed medication.
The healthcare team decided to try and teach her the numbers 1 -10 only. They then asked her which number she found the easiest to remember. She said that she confused the numbers 3 and 8, and also found distinguishing between 5 and 6 difficult. When asked again which number she liked and could hold in her mind, she said she could remember the number 7 best. The healthcare team then taught her to recognise 7 on a digital watch, and every time she saw the number 7 she should give the medication.
The solutions to these difficulties are never straightforward. There are many debates about the availability of ARVs and the morality of supplying medication and to whom. I appreciate there are difficulties with the action taken in the above story, and I am not necessarily advocating such a method of providing medication, merely illustrating the dilemmas .
3.) Availability.
The availability of antiretroviral medication worldwide to those who need it is a complex political, social, economic and cultural problem. The problem of resistance to ARV medication is also significant, essentially the medical problem of viral resistance to medication regimes. However, the pharmaceutical industry's resistance to making the medication more available and accessible to those who need it is as equally destructive. Some argue that the power of the pharmaceutical companies to control access and availability is a capitalist weapon to maintain the dominance of the western world. Indeed the divisions are clearly apparent between developed capitalist western nations with access to ARV medication, and developing nations where often the incidence of HIV is greater, yet access to medication is at best limited, and more typically unavailable.
Political and economic arguments aside, there are other concerns related to the availability of medication. The WHO target of 3x5 is admirable. 3 Million people on medication by 2005. Availability, in itself, however is not an answer. Wide access to ARV medication could actually be dangerous in the long term if it is not linked with the infrastructure and foundation to support the regime. To provide effective and responsible care requires the availability of the right kind of medication and, essentially, the logistics to support it.
ARV medication demands strict adherence to be effective. Again richer nations have the tools to facilitate adherence: literacy; knowledge of time; and an ability to read a watch, or clock in order to calculate time. These basic essentials are noticeably and consistently absent in many developing nations. Providing medication blindly, without the infrastructure to support it in terms of teaching, monitoring, ensuring ability to tell the time etc, would almost certainly impede effective adherence and resistance will soon follow.
If this occurs in groups of people, widespread resistance and resistant strains of the virus develop, rendering the medication ineffective. Thus, it may be more responsible, in some instances, to do nothing. Idealism and hope can sometimes be dangerous. We should consider all aspects of treatment holistically, and not simply focus on the availability of medication as an ultimate goal.
4.) Pictures of healthcare providers in Southeast Asia.
During recent time spent exploring and contributing to, where possible, healthcare provision in Southeast Asia, I was struck by the diversity of healthcare providers. I wanted to illustrate some of these roles and the difficulties the care providers face in trying to supply adequate healthcare. I was most impressed by their dedication, determination and resolve to do this despite adversity. I have deliberately omitted the specifics of place, due to sensitive political issues in certain countries.
Clinical Sister, Intensive Care Unit, Government hospital.
A picture of dedication and commitment.
A nurse dedicated to care for her people and striving to improve nursing in her country, and develop it to an international standard. With severe restrictions on information into and out of the country, development and learning is severely impeded and curtailed. However, these limitations and difficulties did not hinder her resolve to achieve her aim. Only on a rare opportunity to attend a one-month scholarship course abroad, was she introduced to the concept of the nursing process. She is currently striving to introduce nursing documentation, and to encourage nurses to systematically document and record their care and the patient's condition. She has little to no resources to assist her in her goal. No books, access to a computer or Internet. Indeed even plain paper is a rare and limited resource. Working at night, after her daily shift, in a private clinic to gain a salary that she can survive on, she refuses to give up her poorly paid work in the government hospital, believing in her mission to care for those who are in need.
As a teacher she instructs student nurses and is keen to teach them the importance of vital sign measurement. Her belief in patient care is clear, and her determination to improve nursing care, despite a restrictive environment, inspirational.
Medical Doctor Intensive Care Unit, Government hospital.
A picture of concern and misinformation.
During my visit to the unit, the I.C.U. doctor pulled me to one side and with a sincere and deeply concerned expression on his face, asked me whether we had 'human clowns' in England. Somewhat perplexed by this question, I asked him to repeat it. He then said that he had heard, (and obviously believed with all sincerity judging by the expression on his face), that England and America had actually successfully cloned human beings, and created a whole race of human clones.
His hushed and anxious tones indicated his concern and belief in the veracity of the story. I told him that I was unaware of human clones existing, although research was continuing in genetics and in cloning.
Initially I was surprised that an apparently intelligent and educated doctor could believe such a story. However, on further thought and consideration for the limited and selective information dissemination typical in his country, and the nature and use of propaganda there, I understood how such an eminent, well respected and intelligent doctor could be so susceptible to rumour.
In the west, our access to information is unlimited and unrestricted, and we are educated to question and appraise; both of which we commonly take for granted. However, there are countries where for political reasons both access to information, and the freedom to question is impossible and also highly dangerous. These restrictions influence the nature of thought and knowledge; severely impeding developments in healthcare knowledge and therefore provision.
The Volunteer Ambulance Driver.
A picture of assistance.
This man voluntarily sought to establish a small group, and through donations managed to supply his town and community with an ambulance. The 'ambulance' is a vehicle with a volunteer driver, a place for the patient to lie, a small oxygen cylinder with nasal specs, and a recently donated and highly prized foot operated suction machine (foot operated as there is no electricity.) The accompanying passengers in the ambulance- if indeed there were any- would be responsible for operating the suction and oxygen as needed. There are no accompanying healthcare providers, and none of the drivers have any medical or nursing experience, only a desire to provide for the healthcare needs of their community. A further vehicle, identical to the 'ambulance' save oxygen and suction, is the funeral car used to pick up dead bodies from road accidents.
The Village Leader.
A picture of good intentions.
As the leader of the village with a population of around 300 tribal Palaung, he is called upon to administer medicine and provide healthcare to the people of his village. During the tea-picking season, the village population increases with another 50 people from the lowlands coming to work in the tea fields. The village is very remote and high up in the hills where access is very difficult, especially during the rainy season. The village leader has very limited medical resources and even less healthcare knowledge, but cares sincerely for his village people. One night some people came to call him to visit one of their workers who had taken ill with very rapid onset of diahorrea and vomiting. Throwing a random cocktail of vials, syringes and tablets in a small bag, the group ran off by torch light to the patient. The village leader diagnosed food poisoning and gave the patient chloramphenicol and gentamicin IV, penicillin, and talasap. Believing intravenous medication and antibiotics are supremely effective.
The following day the patient reportedly felt better. I asked the village leader to show me his medicine. A small wooden cupboard was used as storage. With no electricity or running water in the village, keeping the medicine cool is impossible. He opened his boxes of vials and medicines, the majority of which were from China as they are cheaper. When I asked him what kind of medication it was he struggled to remember the contents of vials, forgetting which medicine the Chinese kanji characters referred to. His medical knowledge consisted of a few months spent at the town hospital to learn how to treat people, and what medication to give.
Villagers also use herbal medicine made from roots of plants, and believe strongly in medical traditions. After childbirth a Mother will only accept a very restricted diet of clear soups and vegetables. Most of these beliefs can be traced back to animist worship and fear of the spirits. Thus, one's ancestors, myth and religion still determine certain health practices in these remote tribal villages.
The Nuns.
A picture of sisters of charity, providence and mercy.
A nun-led clinic and a leprosy colony; both independently and autonomously managed by the sisters without medical supervision. Some of the elderly lepers, practically blind and with grossly deformed hands and feet have selected and chosen their coffins. These they keep above their heads in the wooden rafters of their rooms for when their time comes. The nun's medical knowledge is derived from a group of Italian missionary nuns who came more than 50 years ago, and were later exiled with all other foreigners in the 1960's.
The nun-led clinic is staffed by an elderly nun in her 60's, trained by the Italian missionaries, and a younger nun who has midwifery training, to provide health care to the poorer populations, especially the tribal villagers. There is no doctor or medical supervision at all. A model of empowerment: a nun-led service providing access to healthcare otherwise unavailable; but also a picture of risk.
A widely and strongly held belief among people in Southeast Asia is that intravenous medication- regardless of the type or necessity- is the ultimate panacea. Thus 95% of the patients attending the clinic received intravenous injections. A woman with high blood pressure for example was given I.V. vitamin B and C. An itchy skin rash on a child was treated with glucose, calcium gluconate and chloramphenicol, all intravenously.
Diagnosis relied on patient's verbal report of symptoms and blood pressure measurement. Indeed anaemia is diagnosed when blood pressure is low, and is called 'bad blood'. Sharp safety was minimal with nuns walking between rooms and passing in narrow doorways with exposed needles. Syringes are apparently sold and re-used, and needles buried in the ground as the only means of disposal.
The Family.
A picture of prevention.
At home, whether in village or town, many use traditional medicine. This is often in the form of powders ground from roots of vegetables or trees, and carefully chosen for their medicinal properties. Herbal teas are frequently drunk and some claim to cure TB and asthma. If one feels bloated with indigestion, one kind of powder is taken. If one has symptoms of a cold, a different powder is chosen. The dosage consists of a finger dipped into powder and licked. Often the finger dipping process is a communal family affair before or after a meal.
The Buddhist Monks.
A picture of omnipotence.
With over 80% of the population living in rural areas the problem of access to healthcare is pertinent. Many villages are very remote, and travel is impeded by the bad condition of the roads and tracks. In the rainy season some are impassable. In Southeast Asian countries there are large number of monks. Many enter the temple as orphans, or due to severe familial poverty and as a way- sometimes the only way- to ensure rudimentary education.
Monks are enlisted to reach the village population, who are widely dispersed and scattered. Mainly to provide health education in hygiene, nutrition and HIV prevention, they also provide support for those already HIV positive. Training a health volunteer who is responsible for 2 villages, ensures the monks have a link person who can report on health problems in the communities. Monks also provide food and clothing, and care for orphans and vulnerable children.
While the problems of access to healthcare and education are reduced by the work of the monks, there are of course limitations to the efficacy of these projects. I queried how monks could discuss the critically important use of condoms when doing HIV education and prevention work. Unable to speak directly about condoms, the monks use comparative examples to communicate their message. For example, describing the uses of umbrellas to protect against rain and the sun, and using the sling to hold the monk's alms bowl as a metaphor for a condom. While I appreciate there is some loss in translation to English of such analogous symbols, I wonder how clear and effective such euphemistic prevention work can be?
5.) Nursing Roles in a Nun-led Clinic: some dilemmas.
This nun-led clinic provides healthcare to the poorest villagers. Led by a nun in her 60's who was trained decades ago by an Italian nun before foreigners were annexed from the country, and a second younger nun with midwifery training.
A daily walk-in clinic; open in the mornings after the 6 a.m. mass and before prayers at midday, accessible to all with medical fees determined by ability to pay. Here wounds are dressed and cared for, symptoms and illnesses treated and medication prescribed and dispensed: a one-stop health clinic.
The nuns working independently are examples of empowerment and autonomy. The clinic is an example of accessibility without discrimination. Yet without any medical supervision, and with dubious antiquated training, accessibility comes coupled with risk.
Apparently without any medical protocol, and guided in diagnostics and treatment by experience only, there is potential for error, misdiagnosis and inappropriate treatment. I was struck by the lack of concern or awareness about sharps safety, and the risks of needle stick injuries. Almost all of the patients received intravenous medicine. Sharps were ubiquitous.
There appears to be fundamental cultural misunderstanding about the efficacy of IV medication. IV medication or fluids are seen to be the ultimate and most effective treatment, regardless of the condition or cause of the symptoms or illness. This is perhaps partly due to the reverence held for western medication, and also a consequence of the desire to have some tangible treatment. Thus the prescription of tablets, health advice, life-style or diet recommendations, even when it is the most effective treatment, are regarded by the patient as inadequate and sub optimal care.
The nuns appeared unaware of potential dangers. Exposed needles were carried between rooms, with people often passing in narrow doorways.
Observing these practices I questioned my role in this situation. As a nurse I have a responsibility and duty to provide healthcare whenever and wherever there is a need. I also feel a responsibility and obligation to minimise and manage potential risk. However, I am in the role as an observer and guest in the clinic for a day. I feel it is necessary to fully understand their methods, and appreciate their working conditions, restrictions and limitations before making any suggestions or comments. Such a full appreciation requires more time than my one-day visit.
Nonetheless, what is the cost of inaction?
I hesitate to act because I have a deep cultural sensitivity, and I understand, and have witnessed, the gross misunderstandings that have occurred time after time when idealistic western workers try to apply their model of "ideal" health provision to cultures and circumstances that lack the capacity to sustain such practices; leading only to confusion, misunderstanding and lack of trust, with often greater potential risk.
I feel it is imperative to understand culture both on the macro scale, and also the cultural working of the clinic on the micro scale before intervening. I could see potential for harm minimisation through introducing sharp awareness and safer techniques. Despite this, their methods, although risky, were familiar, well understood and practised. Making suggestions to change their routine and practice, without being able to support continuation or development, could be more damaging and incur greater harm. Changing practice requires a responsibility to support the change process, and an investment of time to achieve this.
Moreover, what may appear to be simple solutions to problematic practice; for example teaching simple sharps safety, often fails to account for the cultural beliefs that maintain such practices. Indeed reducing the number of IV medications administered would lower the risks of needle stick injuries to the patients and nuns, and also reduce the economic burden of treatment. Nevertheless, such a transformation demands a longer-term investment in education and change. It would require changing strongly held cultural attitudes and beliefs in the efficacy and potency of IV medication as the ultimate cure-all.
Health is not independent of culture. Although I have a responsibility as a nurse regardless of where I am; I must also appreciate that naive intervention, without due consideration of the culture, maybe more damaging in the long term.
Reflecting on this experience, I feel it is important for me to be clear about my role and my limitations as a healthcare provider. I should reflect on my personal role as a nurse, my basic duty to care, and the boundaries of this in other countries when I am not working in an official capacity.
Newly qualified, I am not yet comfortable or entirely familiar with my new role and life as a nurse. It will take time for me to adjust to the responsibility, and to establish and develop my own sense of care giving in my nursing role.
6.) Health, History and Culture.
I can no longer view health in isolation. To understand the health concerns of today requires an understanding not just of social, economic and environmental issues, but also an understanding of culture, beliefs, a country's history and the population's experience. Effective and sensitive responses to current health problems necessitates that these are appreciated and taken into account.
Cambodia today is faced with an increasing number of cases of HIV and AIDS among adults and children alike, and a rapidly growing orphan and vulnerable children population; many of whom end up as street children, collecting used plastic bottles or aluminium cans from rubbish piles. Tuberculosis is endemic, and commonly found as co-infection with HIV. Malnutrition is rife; again associated with immunosuppression with woman and children often more susceptible. In addition to this, there are the continuing problems of malaria, dengue fever, typhoid, bacterial dysentery etc.
A different kind of health risk, but as equally sinister and indiscriminate, are the unexploded land mines that still litter the country. There are daily victims from unexploded mines who are maimed, or who lose their limbs and often their lives to these man-made hazards.
Planning interventions to ameliorate the health ills of today requires an understanding of the root cause of such ills: an understanding of history, society and culture and the population's response.
Although the civil war that ravaged the country under Pol Pot and the Khmer Rouge officially ended thirty years ago, the legacy of that war still continues. The devastation it wrought can be seen in the health of the people today, and should not be underestimated. During the civil war, thousands of people were displaced or became refugees. Forced to live in over crowded conditions with inadequate sanitation and nutrition, gave TB an ideal and rapid breeding ground. One doctor in Cambodia estimates that 60% of the adult population is infected with TB. Some cases of latent or dormant TB without symptoms; however this becomes problematic alongside co-infection with HIV, or other causes of immunosupression like malnutrition etc.
The mental health of the Cambodian people suffered an equally violent attack during the civil war: psychological devastation analogous to a raping of the mind. The regime sought to break the trust and solidarity among people, even ones own neighbours and family, thus destroying the bedrock of society. Social cohesion, trust and security were annihilated.
The well-known legacy of increased sexual activity post war only served to fuel the increasing number of HIV infections.
Corruption is endemic in Cambodia and serves as a barrier to the effectiveness and equity of healthcare provision. Corruption is also directly damaging to health. An estimated 50% of medication bought is actually entirely counterfeit, and closer to the Thai border that percentage rises to about 85% of all medicines. A delayed improvement in health, or a complete failure to recover from illness, is less a concern than the greater risk of intoxication due to counterfeit medicine; and children are at greater risk.
The genocidal killings took the educated and professionals first. By the end of the war there were only around forty doctors in the whole country. Widespread illiteracy is the contemporary result of the destruction of education. Such illiteracy makes medicine regimes hard to understand, and harder still to follow. Again, this is all the more problematic when it concerns the demanding regime of HIV antiretroviral medication.
Poor education, coupled with poverty, contributes also to the significant problem of malnutrition. Cultural beliefs derived from animist worship dictate a restricted diet postpartum that makes malnutrition an almost certain occupational hazard of childbirth. This leads to malnutrition in the baby, a failure to thrive and vulnerability to infection.
The lack of investment in establishing an adequate transport infrastructure means that the vast majority of the population are isolated. 80% of the population live in rural communities where roads are poorly maintained and often impassable during the rainy season. Travel is at best time consuming and arduous, but often impossible. Thus accessibility to healthcare provision is limited for most of the country's population.
The systematic destruction of society through the genocidal killings of 1/3 of the population means that almost every Cambodian alive today lost a family member, friend or neighbour. As a result, one could credibly suggest that the majority (if not all) of the population are suffering the psychological consequences of such a legacy and history: a population suffering with post traumatic stress disorder (PTSD), to a greater or lesser extent. A disorder not treated at the time to the sophisticated, responsive psychological treatment seen today; for example Eye movement desensitisation, used as a psychological intervention for victims of the Tsunami in neighbouring Thailand.
In addition to the direct psychological damage of war, longer term and deeper effects are also apparent in society today. Domestic violence is not unusual, and possibly a result of unprocessed PTSD, or a consequence of the annihilation of trust and solidarity in society.
Child abuse is also a familiar occurrence. The parents of today were the youth of Pol Pot's children's camps who lost their own parents, and have no role models or experience of parenting skills themselves.
Medicine alone therefore is inadequate, and ineffective to treat the health ills prevalent in Cambodia today. Successful intervention requires going beyond the symptoms, to the cause of the health condition. Fundamentally one has to understand and appreciate the culture, society, history and experience of the population in order to discover the layers of health ills. Only then can an effective and sensitive response be planned.
Providing medication is only temporary relief, and not economically or humanely effective in the long term. It is necessary also to rebuild society, education and a culture to support the provision of healthcare.
Through my experiences I have learnt how inseparable health, history and culture are. Fundamentally we should be mindful of the difference between what we believe we provide, and how that provision is experienced.
I am now more aware how necessary an understanding of these interrelationships and differences are to achieving an appropriate and effective healthcare response.