June 26, 2014 Speak Truth to Power and Choose Joyfulness part three

As a physician, I am always impressed by the combination of intelligence, dedication, weariness, and fortitude that characterizes so many Palestinians working in the field of health care. Our group has the opportunity to meet with professionals who are willing to speaking honestly and off-the-record, to explore the raw contradictory picture that is a health care system (or frankly non-system) that is part first world, part third world, part internally dysfunctional, and simultaneously constricted by the noose of occupation. This is a summary of that meeting and I am solely responsible for the content and commentary.

The requisite Turkish coffee appears along with folders and documents of official information as we settle in for a discussion with a group of Palestinian researchers who examine medical and public health issues with the support and cooperation of a number of local and international agencies. The investigators work on a number of issues including public health surveillance, assessment, research, health systems analysis, and capacity building.

As a women’s health care provider, I am very curious about breast cancer screening, since arranging mammograms has seemed somewhere between hopelessly complicated and undeveloped and inordinately difficult during my previous attempts to provide clinical care, and I would love to know what researchers have been able to uncover.

We learn that an evaluation of mammogram screening programs in the West Bank was done but it was not possible to determine the efficacy of the screening because of an underreporting of cancer diagnosis. But things were even more complicated than that. A research group looked at 6,700 women, ages 30–84, screened in the West Bank in twelve screening clinics in 2011, they found 21 reported to the cancer registry and they called and confirmed all of them and also found 21 more who were not registered in the registry but were being treated. So we already have a data problem here. On further analysis, researchers documented that the Augusta Victoria Hospital in East Jerusalem is the only location for radiation therapy (the Israelis I am told do not allow radioactive therapies into the occupied territories), so most women go to Augusta Victoria, but the hospital does not notify the Ministry of Health cancer registry; too much paperwork, too little time – I am told that if only it was web-based, they would report all cancer cases. So there is a problem with tremendous underreporting. (Big sigh.)

We found that while researchers wanted to determine if mammography screening picks up cases of breast cancer early there were problems with the data and cancer staging; only 5% of cases had the stage of cancer noted, (1/21 registered cases), so it was not possible to determine if there was or was not more early detection. The barriers to care are also immense. Only four doctors actually read mammograms in the West Bank; the waiting times for results are long in many districts. If cancer is suspected, the woman may need an ultrasound or aspiration, but the Ministry of Health only offers these services in Ramallah, thus women often go to private clinics but some cannot afford them and are (as we say in the medical bizz) lost to follow up, i.e., left to die of their cancer. Fine needle biopsies are also only free in Beit Jala, but again many women cannot get there and thus are also “lost to follow up.” Add to this the tremendous cultural stigma around a cancer diagnosis (all the screening is done confidentially); some women do not even tell their husbands. I suspect it is pretty impossible to get cancer treatment if you are not willing to tell even your sexual partner. Just speculating, of course.

And then there is the whole issue of what is the underlying cause of death on death certificates. I have noted in the past that in the West Bank and Gaza there is a lack of organized, reliable data collection and documentation on issues related to public health and medical issues on the larger population level. We learn that a group of researchers reviewed the notification forms for people dying in hospitals, four hundred in the West Bank and two hundred in Gaza. One analyst remarked that the accuracy of death registry is low, which is an issue in many developed and developing countries, but they only reviewed 600 cases so it is difficult to generalize, but the current data is worrisome.

So why does this happen, I ask. I think of the busy clinics I have attended, the overworked physicians, the lack of continuing medical education courses, the long waits for patients and visits truncated by the pressures to make a diagnosis, order tests and medications, strategize how to manage all of this within the cost constraints, lack of insurance, permits and checkpoints that are part of the reality of obtaining and providing medical services under occupation. We are not surprised to learn that many doctors see no value in the numbers and data and follow up information; they are so overwhelmed they barely do their paperwork. If one hundred patients come to an emergency room every day and many of them have mental health issues, it is easier and quicker to default status to “improved,” or not to register deaths as no one is probably going to look at the data anyway. The doctors are often not well-trained, have no oversight and no threat of malpractice. Medical students lack mentoring and support, so they do not learn how to do better and the system perpetuates itself.

Despite all of the shortcomings, it seems that the mammography studies were helpful, the Ministry of Health is training more doctors to read films, and they are at least aware of the need for maintenance of mammographic equipment (rather than just calling when the thing finally breaks); they know about the shortage of x-ray films and the subsequent quality issues related to scrimping on films. I am having trouble swallowing and breathing, listening and typing. We are talking women’s lives here.

On a more positive note, we are excited to learn that there are researchers exploring the possibility of doing a study in Tulkarem, a city surrounded by the separation wall, located on the Green Line, and the host to many Israeli chemical companies and nearby settlement industries that do not want to be bothered with those expensive environmental regulations and worker protections that are the law of the land in Israel. Between the fumes, smoke, chemicals, industrial waste, etc., etc., there is a high incidence of allergies, skin disease, eye problems, and cancer, but this has never been adequately studied, and given the mammogram studies, you can imagine that this would be a challenge. Noting the difficulties of medical record keeping, a group of researchers is thinking of doing something very clever: they are proposing measuring toxics in the land and water rather than trying to track down possibly inaccurately recorded patient diagnoses. If this moves forward, they will be able to do environmental studies from which much can be extrapolated, but they are skipping the deficits in accurate health statistics. (Environmental racism anyone?)

In addition, we are informed that the analysts have another challenge: they do not have accurate information about the factories and are not even allowed to enter them. Got something to hide, maybe?

Other researchers are analyzing a death study and planning an environmental study in the Jordan Valley-Dead Sea area, including areas of Jericho. They are investigating a health profile in the Jordan Valley, looking at communicable disease, malnutrition in children, parasites, scorpion and snake bites, and the mental health of residents. FYI, the Jordan Valley is a closed military zone with several pockets of Palestinian communities.

We also learn of the work of Juzoor, a health and social policy NGO grounded in the socioeconomic determinates of health and wellness investigating risk-taking behaviors among Palestinian youth. They are studying twenty-five hundred men and women fifteen to twenty-four years old in the West Bank (they couldn’t do it in Gaza), looking at drugs, alcohol, sex outside of marriage, smoking, violence, and mental health. I am impressed. This is very first world. Based on the results from the study’s formative phase, the sexually active youth are mostly interested in internet sex and phone sex, oral and anal sex is next, but vaginal sex is the least common due to the importance of female virginity at the time of marriage. We understand that there are honor killings, but the numbers are obviously hard to get. We are told that it is even more complicated than that. For instance, an apparent honor killing in some cases may not really be about “honor”; perhaps the woman was asked to give up her inheritance to her brother, she refuses and he kills her, takes the money and calls it an honor killing. Or a woman’s husband dies and her brother-in-law wants to marry her, so his first wife asks her own brothers to kill potential wife number two and call it an “honor killing.” Or if a father or brother rapes a girl and she gets pregnant, then they kill her to protect the father or brother. There is no data on this horrific crime, it probably happens more in rural than urban areas, sometimes people call it a suicide, the reports are all “just stories.”

Now that we are deep into forbidden topics, we are informed that there is an increasing rate of suicide, especially amongst the youth, “even with engaged women.” Apparently the police say suicide is increasing, but they don’t want to report the numbers in order not to frighten people. Fortunately, there are good hotlines, such as SAWA (“the Listening Ear for Palestinians Experiencing Violence”), for desperate people who are abused, harassed, or raped. I think about what happens to societies that are increasingly stressed and brutalized, how anger and despair turn inward, how women frequently bear the brunt of male humiliation, rage, and impotence. This unfortunately happens everywhere and we are seeing it here.

Eighty-three men and women in the West Bank were asked about health services for youth, and they reported that they do not trust counseling institutes, are worried about confidentiality, are much more willing to speak to peers. UNRWA is training community-based mental health workers, “this is a good program.” There are school health officers who focus on smoking and nutrition and, for adults, community-based organizations, like the Palestinian Medical Relief Society. Drug use is common in the cities, mostly in Jerusalem and Area C (West Bank area under Israeli control), mostly hashish, which is affordable. Addiction carries a social stigma; the Israeli authorities punish dealers more forcefully if they sell to Jews than to Arabs. Drug use has increased with the increasing brutality of the occupation. (We call that self-medication.)

Given our own experiences on the ground, we wonder if anyone is studying the environmental impact of checkpoints, increased emissions due to prolonged waits and long detours, air quality, water restrictions, repeated exposure to tear gas, chemical weapons, sewage. The answer is no. Obvious environmental issues are not a priority when the population does not have enough food and water.

This research is designed to inform policy with stakeholders, always in partnership with organizations like the Ministry of Health or local citizens. But the politics is critical. “In Gaza phosphorus bombs, what happened?

No one cared.” Beneath the Al Aqsa Mosque, right-wing Jewish organizations are excavating, “Muslims all over the world, crying, became normalized [the frog in the pot of boiling water phenomenon]. We are used to it, powerless, can’t fight continuously. We need to write about it, Facebook, social media, tools that are not controlled and create awareness, buzz marketing, attract attention. YouTube gets thousands of views and shares in two days. This is a power, political support is hopeless.” I am impressed by the energy and enthusiasm in the room. The possibility of the Tulkarem environmental study, “Everybody is excited about the study…farmers and stake holders are supportive. There are many organizations and funders for women. Honor killing used to have one month punishment, now there are no more reduced sentences, this is recent
change.”

We are told to check out the Diakonia International Humanitarian Law-Resource Center in Jerusalem, which does advocacy around justice and international law. So many good people doing good work in a complicated place. Obviously, this is difficult and humbling work. One researcher talked about a PhD thesis that was done on mental health and quality of life (QOL) in preschoolers in Gaza. The author found that 50% of mothers suffered from depression (not exactly a surprise), the QOL of preschoolers in Gaza was worse than kids in the US with cancer or renal failure. The risk of malnutrition was solely related to maternal mental health ( ie. a mother with mental illness cannot take care of her child and respond to his/her needs).

Amazingly, the PhD candidate tried to measure the QOL of the mothers and 40% said “Excellent.” This made no sense. (I mean, this is Gaza), so the researcher called the women and the conversations were basically, “How is life?” “Hamdullah, excellent,” and then women would list a thousand overwhelming complaints. When pressed further, they would respond, “You can only complain to God.” So an assessment of wellbeing is totally culturally determined.

It is time to go. I am trying to wrap my brain around these amazing, gut wrenching conversations and this remarkable group of health care professionals who were willing to share their observations and experiences with us. I am feeling that it’s really not about what is happening to you, it is how you deal with it. Two of our contacts suggest that it is actually possible to choose joyfulness as an act of resistance.

The medical student who is our guide this afternoon suggests we go for a “quick visit” to his village of Taybeh, a Christian town half an hour from Ramallah. Soon we are in a clunky, dusty service heading northeast, and then we are sitting at a table laden with flavorful soup made from mulokhiya, chicken with rice, salad drenched with olive oil, lemon, salt, and pepper, dried mint, and then another eggplant, parsley, tahini concoction and of course, cold Taybeh beer, chatting with his welcoming mother, father, and sister who just happened to have a feast waiting for us.

And then there is the tour of the family’s garden, lush bunches of grapes, almonds (very sweet eaten fresh and raw), figs, olives, mulberries, apples, pomegranates. And just a “quick tour” of the Old City; gorgeous views, churches (actually dating to the time of Christ), ruins, multiple layers of conquerors. The town gathers for celebrations and still sacrifices sheep! We stare at the stones stained blood red and the handprints (dipped in the blood) marking the ancient stone walls. And in the distance, Jordan, the Dead Sea, a Muslim village, Israeli military posts and settlements, all leaning into this tiny, complicated paradise.

I learn later that the medical students hosting us are competing to see who makes the best visit for us to their village. They are all winning.