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Medical practice changed for ever the moment AIDS arrived

Treatment Action Campaign activists in Cape Town South Africa, June 2012

 

The AIDS epidemic has changed practically every aspect of medical practice; from the way we view the disease, the accelerated global research to discover diagnostic tools, to unprecedented drug approval processes and speedy distribution and utilisation of new drugs. To date, manifestations of the AIDS virus are dealt with in practically all branches of medicine; unlike in the early years of the epidemic when cases were largely found in medical (internal medicine) wards, and even there they were isolated from the general patient population.

For example, the first AIDS cases admitted at the Kenyatta National Hospital were isolated in small dark cubicles in selected medical wards, often much against the wishes of the consultants in charge of the wards. No one physically touched the patients and medicines were placed on a stool and pushed inside the room by a nurse who stood clear of the door. Supposedly, the patient would reach the stool from his bed and collect not only the medicines, but also something to eat. When they died the corpse was placed in a black body-bag into which copious amounts of formalin would be poured. Relatives were not permitted to take the bodies for burial lest they spread the disease; the bodies had to be incinerated.

The AIDS virus has received the greatest attention of all time in medical history, more than any other pathogen; it has been as challenging to medical doctors, biomedical and social scientists, economists, theologians and philosophers alike, the pharmaceutical industry and drug regulatory authorities. Indeed, it is the combined effort of all these disparate groups and their quest to understand the disease that finally has shed some light at the end of the tunnel. As a result, today AIDS is not as perplexing as it once used to be. Within a span of under three decades HIV infection has changed from a death sentence to a chronic disease (at least where antiretroviral drugs-ARVs are readily available). This is unprecedented in medical history. For example, it took more than 400 years from the first recorded outbreak of syphilis in Europe (1494/1495) to identification of the causative organism, Treponema pallidum, in 1905 and discovery of the first effective treatment (Salvarsan) in 1910, before the wider availability of Penicillin in 1946. In contrast, the virus that is associated with AIDS was first identified by Montagnier et al. in France in 1983 and by Gallo et al. in the US in 1984, and within less than a decade, several drugs had already received FDA approval.

AIDS hit the world in 1981, first in California and New York in the United States. In 1982 the Centers for Disease Control (CDC) coined the term ‘acquired immunodeficiency syndrome’ (AIDS) and identified four “risk factors”: male homosexuality, intravenous drug use, Haitian origin, and hemophilia A. In 1983 a major outbreak of AIDS was reported among both men and women in central Africa, prompting the CDC to add female sexual partners of men with AIDS to its list of “risk groups”. Shortly afterwards, a history of blood transfusion and  female sex workers were added to the list, and before long the disease became a threat to all segments of society—though it still remains largely concentrated within the poorer and marginalised groups.

Kenyan Aids activists in Nairobi take their campaign in support of the Global Fund to the streets. Photograph: Sidi Sarrow

Amongst the significant impacts of AIDS on the practice of medicine, three can be pointed out, namely, increased precautionary actions by health care workers, safer blood supply (for blood transfusion), and disease activism. Specifically, the AIDS epidemic has impacted on medical practice in the following ways:

Safer infection prevention practices: Today health care workers have to treat all cases as being potentially infectious, and have to observe standard guidelines on infection prevention- to guard against cross-infection between cases, as well as protecting themselves from being infected by their patients. Hospital hygiene and safe injection practices, previously neglected in much of the developing world, have become topics of global concern. There are written instructions on how to handle blood and other bodily fluids, including the use of sterile gloves when handling blood and other body fluids, double gloving during surgery and wearing of visors to protect eyes from splashed blood. Health care workers are trained on safe handling of used needles and surgical blades (sharps), and there is a total ban on re use of syringes and needles. Hospitals would normally maintain registers of needle prick (stick) occurrences and administration of post-exposure ARV prophylaxis (PEP), etc. is administered to the staff involved.

In most countries today blood for transfusion is safer than previously. There has been more careful screening of blood for transfusion- to include besides HIV and syphilis- hepatitis B, A and C, malaria and other pathogens depending on the technological capability of the lab. This has been facilitated by creation of regionalised blood transfusion centres with capability for safe storage of larger volumes, and in contact with hospitals in the catchments areas.

The major challenge in countries like Kenya is ensuring sustained flow of resources to enable supply of the essential items needed for the above. Among the complaints raised by nurses and doctors in recent months are the lack of basic supplies such as protective gear- gloves, gowns and disinfectants. We must guard against slipping back to the days when gloves, syringes and needles were reused- as late as in the early 1990s! Fear of contracting HIV infection may influence choice of career. There have been anecdotal reports that today medicine is no longer the first choice for ‘A’ students in Kenya. A 1988 survey of house officers in the US, 25 percent of all respondents reported that they would not continue to care for AIDS patients if given a choice, while another study in 1991 reported that half of all primary care providers would not treat AIDS patients if they could avoid it[i]. A more recent study shows there is reluctance on the part of some nursing students in some regions of the world to provide care for people with HIV/AIDS, and recommends that educational programmes based on research evidence must play a leading role in developing strategies to help nursing students understand and overcome such attitudes[ii]. However, many would believe things have changed a lot for the better since then.

Disease activism:  In no other disease has there been as much advocacy as in the case of AIDS. For example, the response to the continuing presence of the so-called neglected tropical diseases (NTDs) stands in sharp contrast to the unparalleled achievement in addressing the HIV epidemic. Yet these diseases continue to cause massive but hidden and silent suffering, and frequently kill, largely because the people affected or at risk have little political voice. On the other hand, as mentioned above, the first cases of AIDS reported in the US involved highly educated men, many from the upper echelons of the American society. They soon realized their plight and, through a strong well organized lobby movement, fought hard for public attention and support of the search for ‘cure’. Within less than a decade their advocacy started bearing fruit. Patients also became more active participants in the research and drug development, sometimes not just being study subjects but actively helping in design of clinical trials.

Disease activism has played a major role in quickened drug approval processes, which was almost unheard of before AIDS patients spoke up, and is now becoming common among a whole range of other illnesses, including breast cancer. Although the strongest AIDS activism in Africa has largely been concentrated in South Africa, organised groups of PLWHA in other countries are increasingly becoming vocal in demanding increased access to ARVs as well as to TB and Malaria treatment. One area of success for global disease activism is increased availability of low priced generic drugs

Spill-over effects of research: Funding for AIDS research has surpassed expenditures for any other disease. According to UNAIDS in 2008, an estimated US$15.6 billion was spent on HIV and AIDS compared to US$300 million in 1996. However, a 2010 UNAIDS report warned that flattening of global funding for HIV research may limit ability of researchers to move promising approaches forward, especially in search for a vaccine.

The extensive research connected with AIDS has spilled over into a greater understanding of other chronic diseases especially cancer. Sexually transmitted diseases research, prevention and treatment is another area that has received renewed attention since AIDS, as sexual and reproductive health gained renewed prominence. The frequency with which Tuberculosis occurs in HIV-infected persons has led [1]to a resurgence of interest in the diagnosis and treatment of this ancient disease, while advances in the treatment of HIV-associated Opportunistic Infections have benefited other immune-suppressed persons.

Scientific advances have resulted in the development of lifesaving, albeit not curative, treatment for HIV. By the end of 2009, more than 5 million persons in low- and middle-income countries were accessing Antiretroviral Therapy (ART), unimaginable just a few years before and made possible through the use of generic drugs, price reductions for brand-name drugs, and efforts of international donors through initiatives such as the US PEPFAR and the Global Fund. The increasing availability of highly effective ARVs have transformed the way doctors look at HIV infection, and so too has terminal care changed. What had previously been an emphasis on simply maintaining life is increasingly shifting to give greater weight on quality of life, comfort and individual productivity.

Research on the prevention of mother-to-child transmission of HIV has led to interventions with the potential to virtually eliminate HIV disease in children (i.e. HIV-free generation). This should have a bearing on doctors’ attitudes towards childbearing for those infected with HIV, including investigating them for infertility. Research has identified viable options for HIV prevention in intravenous drug users, such as opioid substitution therapy and needle/syringe exchange.

Diminishing stigma: There was a time when doctors that treated AIDS cases were stigmatized and shun by other colleagues and patients. Even Hospital administrations quietly tried to discourage doctors from taking too many AIDS patients because it affected their facilities’ bottom lines. Today this is generally the least of their concerns. Even Insurance companies have opened up to people living with HIV albeit at much higher premium.

Typically, it has taken AIDS to bring the existence of marginalized groups such as sexual minorities to attention in low- and middle-income countries and to highlight their vulnerability and needs. They belong to what have been referred to as the ‘most at risk populations’ (MARPs), that include sex workers and their clients, men who have sex with men (MSM), and people who inject drugs (IDUs). It is recognised that failure to address these groups will compromise efforts towards reduction of new infections. As such it is unrealistic to operate as though they do not exist!

On the future: There is no better way of summarising the future of AIDS than to quote Dr Kevin M. De Cock, Director of the Center for Global Health at CDC in Atlanta: “Inevitably, the story of HIV/AIDS ‘could not be one of final victory. It could be only the record of what had to be done, and what assuredly would have to be done again in the never-ending fight against terror and its relentless onslaughts.’ An enduring frustration is that we will not know how the story of AIDS will finally end because the epidemic will outlast us. Yet the tide can be turned with principled pragmatism, adequate resources, trust in communities, and science as our guide”


[i] Infectious Disease News, June 2011, Infectious disease and the evolution of AIDS Thirty years since “patient zero,” how the world’s worst epidemic forever changed the specialty. http://www.healio.com/infectious-disease/hiv-aids/news/print/infectious-disease-news/%7BC1A89E60-E999-4FAB-A0FE-9DC54FD9AEED%7D/Infectious-disease-and-the-evolution-of-AIDS

[ii] Pickles D., King L. & Belani I. ( 2 0 0 9 ) Attitudes of nursing students towards caring for people with HIV/AIDS: thematic literature review. Journal of Advanced Nursing 65(11), 2262–2273. doi: 10.1111/j.1365-2648.2009.05128.x

 

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Medical negligence and malpractice is rife in Kenya’s health facilities, a Public Inquiry reports

The recently launched report[i] of a public inquiry into violations of sexual and reproductive health rights in Kenya has highlighted the existence of widespread medical negligence and malpractice in health institutions. Indeed many of the complaints of mistreatment in health facilities, especially those raised by former obstetric patients, frequently bordered on medical negligence and malpractice. Medical negligence and malpractice interfere with the quality of care received by patients, and deny them enjoyment of the right to the highest standard of health care which is their constitutional right.

(Women are being counselled at a RH clinic. Picture source: J Mati)

Medical negligence can be defined as the commission of an act that a prudent person would not have done or the omission of a duty that a prudent person would have fulfilled, resulting in injury or harm to another person (patient)[ii]. Medical malpractice means bad, wrong, or injudicious treatment of a patient professionally, which results in injury, unnecessary suffering, or death. Malpractice and negligence may occur through omission of a necessary act as well as commission of an unwise or negligent act[iii]. This may be in the form of misdiagnosis, wrong decisions and treatment, prescription errors, and medical or surgical complications, all of which may result in suffering, permanent injury or death.

In Kenya, medical, nursing and midwifery practices are regulated by statutory authorities, including the Medical Practitioners and Dentists Board[iv] (established under Cap 253 Laws of Kenya), the Nursing Council of Kenya[v] (established under the Nurses Act Cap 257 Laws of Kenya) and the Clinical Officers Council (established under the Clinical Officers [Training, Registration and Licensing] Act Cap 260 Laws of Kenya)[vi]. These bodies are obliged to protect members of the public by ensuring that the medical practitioners (including dentists), nurses and midwives, and clinical officers are properly qualified, that they perform their services to patients with skill and diligence, and that they observe at all times high moral and ethical standards

Evidence regarding alleged mistreatment in health institutions was received at all sittings of the Inquiry, and among the witnesses raising complaints of medical negligence and malpractice the majority were obstetric cases that suffered various types of injury and suffering to themselves and their babies. Complaints of long waiting periods and delays in getting attended to in health facilities were common. Sometimes this was occasioned by doctors or midwives on call refusing to come when summoned, or due to shortage of staff. Associated with the above were complaints of negligent management of labour resulting in stillbirth, mentally handicapped child and maternal death. There were other complaints of persons who had been subjected to various surgical procedures such hysterectomy without their consent (See below). In spite of this, hardly any of the complaints had been reported to the regulatory authorities.

Selected examples of specific complaints of medical negligence and malpractice:

· Denial of information- failure to explain the nature of illness or injury and the modality of treatment and its consequences. In particular, there was inadequate information given to the patients before and after surgery.

 Sterilisation without consent:

A mother of three was admitted with abruptio placenta at a Mission Hospital, where she was later taken to theatre for C Section and, unknown to her, bilateral tubal ligation was carried out. She was not informed of the latter and since she did not wish to conceive shortly after the operation she commenced on a family planning method. She had taken two doses of Depo Provera when a doctor (elsewhere) happened to read her discharge card which showed she had actually been sterilised!

· Case of malpractice-  Doctor who was drunk;

A case of ruptured uterus and fetal death:

A woman was admitted at a public District Hospital in early labour. She had previously delivered by C Section and so was asked to sign consent for repeat CS which she did. However, a doctor who was drunk saw her in the Labour Ward and asked her to begin pushing the baby, without any success. He then tried unsuccessfully to apply forceps. By the time she eventually was taken to the operating theatre her uterus had already ruptured, the baby had died, and she subsequently developed difficulty in controlling urine (?Vesico Vaginal Fistula). She has not conceived since then and she could as well have had a hysterectomy done.

· Case of medical negligence- denial of services

Forgotten foreign bodies after surgery:

A relative told of the case of a woman who had a C section performed by a doctor during which an abdominal pack was (accidentally) forgotten in the abdomen. When she returned 2 weeks later complaining of abdominal pain and swelling she was told she needed another operation to remove a foreign body which required further payment. This could not be done because she did not have any more money. The patient died of complications most probably associated with the foreign body.

 Another case was that of a single mother of two who delivered normally at a Health Centre (Level 3). An episiotomy had been performed and a swab left in the vagina which should have been removed after a few hours. However, the patient was not informed about it, and the swab was left in for 2 weeks. By that time infection had set in and she had also developed faecal incontinence (?RVF). She is now ashamed of her condition and has not mentioned it to anyone except her mother. [It is a possibility that she suffered rectal injury when the episiotomy incision was made].

 · Negligent management- failure to apply standard procedures:

Management of labour in a HIV+ woman did not conform to guidelines for prevention of mother to child transmission of HIV infection: An HIV+ woman was admitted at a public District Hospital with ruptured membranes. Her husband, also HIV positive, told the staff that they had been advised by another doctor that the delivery should be by CS, but this was declined, besides, she was not given ARV therapy as instructed in the PMTCT guidelines. Instead, she was allowed to have a prolonged labour, delivering a fresh stillborn child.

Failure to give an essential prophylaxis:

A primigravida at term was admitted in a private hospital where she had made several antenatal visits. Her labour was uneventful, delivering a healthy male child. However, although she had been informed at the same hospital that she was Rhesus Negative she was not offered a standard vaccine, anti-D gamma globulin to protect against Rhesus iso-immunisation. In addition, she was not advised what to do in case of a subsequent pregnancy.

· Negligent management of labour, doctor refused to come to the hospital when summoned:

A mother of three was admitted to a public District Hospital in labour where she remained for 48 hours without delivery mainly because the only doctor who could do a C Section refused to come. When eventually the doctor came she was taken to theatre, delivered of a very depressed child who breathed after prolonged resuscitation, but the mother died on the table. The child is now intellectually handicapped.

· Negligent management- Hysterectomy performed without consent

Hysterectomy performed without consent on a disabled person:

A woman with dwarfism (possibly achondroplasia) was diagnosed with uterine fibroids at a provincial Hospital and advised she needed an operation to remove the fibroids. She was taken to theatre but afterwards was not explained what had been done. When three weeks later she realised that a hysterectomy had been performed she sought explanation from the doctor. She was taken aback when the doctor wondered aloud if in her condition she really expected to get a baby!

Hysterectomy performed in a woman diagnosed with an ovarian cyst:

A married woman, a mother of four girls had hope that a boy would come someday. She was seen at a Provincial Hospital complaining of abdominal pain, where an ovarian cyst was diagnosed and confirmed by an ultrasound scan. She was advised to undergo an operation in order to remove the cyst; at no time was possibility of a hysterectomy mentioned. “Later when I read the discharge summary it stated that the uterus had a fibroid and a hysterectomy was performed. That shattered our hope for another child, perhaps a son”. She has contemplated suing the doctor but does not have the resources to do so.

Hysterectomy performed possibly because of intractable post-partum haemorrhage:

A woman in her first pregnancy was under care of a private obstetrician who saw her several times during pregnancy. When she went two weeks past the due date he admitted her at a private hospital for induction of labour, but for three days labour did not set in. However, when labour started on the fourth day her doctor was nowhere to be found; it was not until the next day that he appeared in the middle of the night and attempted to deliver her by vacuum extraction, but this was abandoned because there was a lot of bleeding. She was then taken to theatre and a CS was performed- a baby boy weighing 4kg. When she was returned to the ward the bleeding continued and had to be returned to theatre again, but was not told what was done there. “What annoyed me the most was that the details of my operations were only made known to my husband when he went to clear the bills, and then it was not until three months later that my husband actually informed me of the loss of my uterus. After some years, my husband left me for another woman and to have more children. I contemplated suing the obstetrician, but another doctor dissuaded me saying whatever was done was to save my life”.

Conclusions

The Public Inquiry report makes specific recommendations addressing the various aspects of maltreatment, medical negligence and malpractice in health institutions. It specifically calls on the Government to implement the provisions of Article 43 (1a) in the Constitution of Kenya (2010) and to ensure that health facilities at all levels are adequately staffed and equipped to provide quality health services.

The Ministry of Health and health professional regulatory bodies should ensure adherence to internationally accepted ethical standards and guidelines that govern medical practice with a view to eliminating the rampant cases of mistreatment, medical negligence and malpractice, in health facilities. The codes of practice must incorporate the obligations of health care providers to their patients, and should outline the rights of the patient with clear penalties spelt out in cases where the provisions are not adhered to. The government must make it mandatory that all health facilities establish complaint mechanisms aimed to enable clients forward their complaints to the relevant authorities for action in cases where they feel violated.

Finally, there is urgent need to increase the number of health care providers, across the country. Health training institutions have a duty to inculcate among their trainees high moral standards and respect for patients’ rights, including the right to information and informed consent. The government should recruit, train, employ and deploy more health personnel, and strengthen supervision, with a view to address the current shortage that is being experienced throughout the country.


[i]Kenya National Commission on Human Rights: A Report of the Public Inquiry into Violations of Sexual and Reproductive Health Rights in Kenya, April 2012.

[ii]Mosby’s Medical Dictionary, 8th edition. © 2009, Elsevier.

 [iii] Miller-Keane Encyclopedia and Dictionary of Medicine, Nursing, and Allied Health, Seventh Edition. © 2003 Saunders, an imprint of Elsevier.

 

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