For some patients, home may not always feel like the safest or most comfortable place to be. When faced with advancing illness, some children and their parents in fact prefer the hospital, where they can be supported and comforted by the staff around the clock. Providing options is important. At this critical time in the life of a family, when so many options are being taken away, preserving choices for how and where a patient’s final days are spent is almost an act of defiance: death may be inevitable, but the family will, as much as possible, maintain control over what happens between now and then, including where it happens.
Unfortunately, the option to remain comfortably at home is not one that we are able to offer many of our Palestinian patients. While our staff at Hadassah can to some degree provide at-home care for our Israeli patients, as Israeli citizens we are not legally permitted to enter Palestinian towns and villages in Area A and Area B in the West Bank (as defined by the 1995 Oslo II Accords) to provide the same care for our Palestinian patients. As a dual Israeli and American citizen, I always have the option of flashing my American passport if need be, but when I ask colleagues, they tell me it’s a risky proposition and that neither the Israelis nor the Palestinians would be willing to guarantee my safety. Conversely, friends and extended family of our Palestinian patients in those areas can’t enter Israel without a special permit. So the parents of dying Palestinian children under our care are forced to make a terrible choice. They may remain in the hospital, with the full support of our staff, with all the necessary medications and equipment but without the company of family and friends, or they may bring their child home to die, surrounded by friends and family but without our team present to provide the symptom relief and pain management that would be available at Hadassah. It’s a choice no parent should ever have to make, and it’s hard for me to understand why some accommodation, some exception to the rules, cannot be made by the Israeli government and the Palestinian Authority for a child who’s dying of cancer. I can stand on a ridge just above the hospital and look out at nearby Palestinian towns in Area A and Area B. They are close enough so that when conflict flares we can easily strike each other with artillery and rifle fire, but I cannot cross that short distance to provide comfort for a dying child.
Arabs who live in East Jerusalem are not subject to the same travel restrictions as those living in the West Bank. This eastern half of the city was seized by Jordan during the War of Independence in 1948, but after the Six-Day War it came under Israel’s control, along with the rest of the West Bank. In 1980 the Israeli government formally annexed East Jerusalem to the western part of the city. This area is populated almost entirely by Arabs (there are a bit more than a half-dozen Jewish neighborhoods here and there, including Mount Scopus), but how exactly to classify the Arabs of East Jerusalem—and how they classify themselves—is a complex issue. The answer you get depends on who and where you’re asking. Though East Jerusalem now falls under Israeli civil jurisdiction and the inhabitants are eligible for Israeli citizenship, most of the Arabs who live in this area do not register as such, even though they are subject to Israeli law and dependent on Israeli civil services such as water management and trash collection. And regardless of their feelings about being Israeli citizens, our patients who live in East Jerusalem have their healthcare covered by the Israeli national health insurers, just like any other Israeli.
In one of these East Jerusalem neighborhoods, in the valley below the walled Old City of Jerusalem, lives Yassin, a sixteen-year-old with a rare tumor in his chest that recurs shortly after his initial chemotherapy treatment. I am introduced to him and his parents after the tumor has shown no response to further therapy and it’s clear that progression is inevitable. There are no more interventions to offer, and we are meeting to discuss how to manage what time remains for him. His parents have brought along his newborn sister. I am both reassured and taken aback by her presence, by this new life cooing away in the midst of a room thick with the talk of death. She is, on the one hand, a comforting if clichéd reminder that life does renew itself. On the other hand, as I look at her I can’t help but imagine newborn Yassin being cradled by this same woman sixteen years ago, as his parents happily planned his future, never imagining they would end up in a place like this. I wonder if his mother is thinking the same thing. She holds the baby tight, as though both drawing comfort from her and shielding her from us and from the world we represent.
Yassin declares pretty quickly that he wants to spend as little time in the hospital as possible. He’s always been friendly and appreciative of our efforts, despite our failure to cure his cancer. But he’s clearly not interested in spending any more of his time here than is absolutely necessary. We decide that he should come in just for weekly checkups, but as his disease progresses, we agree that these visits make less and less sense. Because Yassin lives in East Jerusalem, we can make home visits, and we resolve to do our best to provide care for him there.
I’ve seen Yassin’s neighborhood many times before, but only from a distance. There is a beautiful promenade along the terraced ridges of West Jerusalem that has been crafted from rose-gold Jerusalem stone and is bordered with cypress trees, rosemary bushes, and lush flower beds. You can look down into the valley and see the walls of the Old City and the golden dome of the Al-Aqsa Mosque that rises above it, and farther east, the green slopes of Mount Scopus and the Mount of Olives. You can also look down onto a jumble of tightly packed neighborhoods that spill down from the easternmost side of the Old City and fill the Kidron Valley. Here and there a large Israeli flag marks a home that has been bought by right-wing Jews in their slow but steady attempt to change the character of these Arab neighborhoods. They are a reminder that this is an area where violence could explode at any moment. I know the names of these neighborhoods from my patients’ charts and from hearing them mentioned on television news programs—Silwan, Ras el-Amud, Jabel Mukaber—and I try to pronounce them with the proper Arabic intonations, now that I’m a local boy. But there is no denying that in my mouth the names still feel foreign, even forbidden, no matter how many flags we plant in their soil.
The Kidron Valley got its name from the stream mentioned in the Bible that runs through it. Some say that it’s the area that the biblical book of Joel refers to as Emek Yehoshafat (“the Valley Where God Judges”), where during the Messianic era there will be a settling of accounts with the nations that oppressed the Jews during the millennia of exile from the Land. In any case, I’m about to see it up close for the first time, as I prepare for my first home visit to Yassin.
I go with a nurse who has been there before and who offers to drive so that I don’t get lost in the narrow alleyways and unmarked lanes. As we reach the crest of the ridge that marks the end of the Jewish neighborhoods, we start a steep descent down narrow switchbacks into the valley. Near the start of the descent, we pass a heavily fortified post manned by border police. The government may say that we are all residents of one united Jerusalem, but it’s obvious that some neighborhoods get treated differently than others. As we continue driving, it is as though we are going back hundreds of years in time. The road is broken and full of potholes, and once we reach the floor of the valley it becomes impossibly dusty and narrow, the homes and shops closing in tightly on either side. There is barely enough space for cars to squeeze by. Flowing around our slow-moving vehicle are a mix of pedestrians, goats, donkeys, and chickens. Shops open directly onto the road, close enough so that I could reach out the car window and touch their wares. Merchants have their goods laid out in the sun and dust, displaying crates of fruits and vegetables, or suspending chains from which hunks of unidentifiable meat hang, impaled on large, mean-looking hooks. Looking back up toward the ridge, I see a river of garbage spilling down the barren slope, as though a reservoir of refuse has burst its dam. Anyone who claims that Jerusalem is undivided has never been down here.
After several twists and turns, we start up the opposite side of the valley and soon arrive at Yassin’s home. The whole trip has taken less than ten minutes. We are within hiking distance of the cafés and shops of upscale West Jerusalem neighborhoods such as the German Colony and Baka, but in every other respect, we are a world away.
The apartment building is an unadorned, rectangular three-story building of poured concrete, and iron bars protruding from the top indicate that it’s still a work in progress. The buildings in the neighborhood are largely indistinguishable from one another, most looking like they are either still under construction or in the process of falling apart. Like most homes here, Yassin’s has a large black plastic water tank sitting on the roof. The nurse tells me that the water supply from the Jerusalem municipality is undependable and is often shut off without warning. The tanks provide a reserve supply, just in case. The area in front of the building is a dirt lot, and as we park there I note that the ground floor of the building has been converted to a small stable. A horse pokes its long snout in our direction out a half-open door.
We get out of the car and I look around and up toward the valley’s eastern ridge. It doesn’t look all that different than the opposite side from which we’ve just come, except for one thing—a gray concrete wall that runs along the ridge, rising up starkly against the bright blue sky. It’s a segment of the separation barrier, the wall around the West Bank that the government began to build in response to terrorist incursions into Israeli cities during the Second Intifada. Yassin lives, quite literally, in the shadow of the wall. Had his village been situated just a few miles to the east, on the other side of that wall, we might not have been able to make this sort of home visit.
Yassin’s parents welcome us in. The house is sparsely furnished but neat, with thin, colorful area rugs scattered throughout providing some contrast to the concrete floors. Sunlight pours into the living room, but I notice that only a few of the windows actually contain panes of glass; the rest are simply open spaces with rough, unfinished edges that have been cut into the walls. Yassin’s father appears embarrassed when he sees me scanning the place, and he quickly apologizes and tells me that the apartment is still being worked on. He gives me a tour, pointing out where he will be adding walls, cabinets, and decorative items. We end the tour in Yassin’s bedroom, which, in contrast to the rest of the house, appears to be completely finished, well-furnished, and sweetly decorated. It feels like we have stepped into a totally different home. Yassin is lying in bed, propped up with several pillows, a sure sign that his lungs are by now so filled with tumor and fluid that lying flat is impossible. Next to his bed an IV pump on a pole quietly hums away. The bedside table is neatly stacked with boxes and bottles of pills. We arrange several chairs and sit and chat for a while, making sure that Yassin is comfortable, that he has enough of a supply of medications, that the IV pump delivering pain medication (in this case we’ve managed to get an actual digital pump) is working properly. We make small talk and drink fresh carob juice, which his mother insists is imbued with powerful restorative properties. Through the window I can see clear across the valley to that promenade in West Jerusalem where I have so often walked and jogged and wondered about the villages down here and the people who live in them.
Yassin lives for weeks beyond our expectations. As some studies now suggest, once aggressive disease-directed therapy has been stopped and more attention is paid to comfort and quality of life, some end-stage patients may live not just more comfortably but also longer than expected. I am convinced that part of what has kept Yassin alive has to do with his not coming to our clinic, where we would have tinkered with his body in ways that we couldn’t at his home—drawing blood, giving fluids, correcting electrolytes, trying to fix the unfixable. Instead of addressing lab values and blood tests, we help support Yassin’s comfort in his bedroom, adjusting medications based only on his reports of symptoms such as pain and nausea.
The night that Yassin passes away I am abroad at a medical conference. The nurse, called to his home to help manage the symptoms of active dying and to support the family, is stopped by the border police at the security checkpoint.
“Are you crazy?” a policeman asks her when she tells him where she’s headed. “It’s not safe down there at night.”
They insist on sending a jeep full of policemen to accompany her into the valley. United Jerusalem, I think again wryly when the nurse tells me the story upon my return. I feel that we have accomplished something by enabling Yassin to die at home. But I wonder what you call a home with an irregular water supply, with windows that look out onto a flowing river of trash, with a bunch of guys with guns sitting in your living room to protect the nurse who has come to minister to your dying child. When you live in the shadow of a concrete separation barrier.
When I return to my apartment that evening, I survey my belongings, my ever-growing library that I insist on dragging with me each time I move, the trinkets collected on various vacations, and I wonder if all of it makes this place my home. I love the city I live in, the city I work in, the land around me, but now that I’m actually living here, I am all too often aware of its heartbreaking complexities, its intractable problems, and I wonder if it will ever truly feel like home.
Excerpted from This Narrow Space by Elisha Waldman. Copyright © 2018 by Elisha Waldman. Reprinted by permission of Schocken Books, an imprint of the Knopf Doubleday Publishing Group, a division of Penguin Random House LLC.
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Elisha Waldman is associate chief, division of pediatric palliative care, at the Ann and Robert H. Lurie Children’s Hospital of Chicago. His writing has appeared in The Washington Post, The New York Times, and Time.