Even before she knew what kind of cancer she had, Robin Hodges knew she didn’t want to be resuscitated. If her heart and lungs began sputtering out, doctors should let them. Back in 1999, she’d watched her older sister die agitated and muttering, trying to pull herself out of a tube-tangled hospital bed. Hodges didn’t want that for herself. That wasn’t how she wanted to be remembered, and it wasn’t how she wanted to remember Chelee.
She wanted to remember Chelee as a teenager, when her room seemed like a magical realm, with its lava lamp and posters and Lynyrd Skynyrd records, a fortress of wisdom and taste. “When she turned 16 and I was 12, I remember thinking, ‘When I turn 16, I will know as much, if not more than Chelee,’” Hodges said. “‘I will be an adult. I will know the answers to everything.’”
But the answers to everything changed. Certain as she was in 2016 about not wanting her organs forced back into service — certain enough to tell her husband that, before she called their adult children to say there were worrisome growths in her lungs and brain; certain enough to add it to her medical record, before going under for neurosurgery — a few weeks ago, Hodges reversed course.
Since she was diagnosed, 3 1/2 years ago, Hodges’ advanced lung cancer had morphed from something that could kill her at any moment to something she could live with for a while. She’d benefitted from newer and newer therapies for smaller and smaller slivers of the population, each drug tailored to block a single molecular variant, found only in a subset of tumors — a dizzying level of biomedical finesse. Now, at 57, she’d survived long enough to wonder what would happen if she got Covid-19.
For many in her position, the question induced a kind of whiplash. They’d heard the pandemic could cause shortages of life-sustaining drugs and machines. They’d read how hospitals might prioritize lives in such a situation, and late-stage cancer would probably move you down the list. In other words, the very medical centers that had kept these patients alive longer than initially expected would, in extremis, parcel out care based on how long someone was expected to survive.
The creators of the policies said that they were being as fair and objective as possible, and that their algorithm would take every individual’s current prognosis into account. Cancer patient coalitions retorted that no one had consulted them; regardless of their prospects on paper, they said, their lives were worth saving, and they were protected under the Americans with Disabilities Act. If their medical records contained what’s known as a DNR — a “do not resuscitate” order — and there were, for instance, a shortage of ventilators, then they wouldn’t even be in the running for whatever equipment remained. So some patients began calling and texting their oncologists, to remove the DNR from their files. Some took to social media, encouraging others to do the same.
“If I could come out of this infection on the other end, then I want a chance, because right now I’ve been living with lung cancer for 11 years,” explained Jill Feldman, a longtime lung cancer advocate in Illinois and the founder of an online support group with over 2,000 members. “Yeah, there are setbacks. Yeah, I’m incurable. But I’m definitely a productive member of society and my kids deserve their mom.”
Fear of discrimination is especially acute among lung cancer advocates, as the disease carries a kind of double stigma: People assume, incorrectly, that it’s always smoking-related, and in judging the harm self-inflicted, they mistake addiction for choice. To Feldman, reversing her DNR was an act of protest: For the length of the pandemic, she hoped to protect whatever agency patients like her had over their own endings. Her end-of-life wishes themselves hadn’t really changed. She wanted care that could prolong her life as she was living it, but nothing that would just drag out her death.
Even distant, analog worlds can be jolted by a tweet. Hodges wasn’t one for cancer support groups — too draining — or for the constant churn of social media. Her husband was, though. He saw posts like Feldman’s. When he broached the subject with his wife, her mind drifted not to the nightmare scenario of ventilator rationing, but instead to the ups and downs of the last few years, to see if she could pick out a coherent trend.
“Dealing with cancer is dealing with a lot of uncertainty. … For people with cancer, the rest of America is coming into a space they’re very familiar with.”
Laura Petrillo, palliative care specialist, Massachusetts General Hospital
Hodges removed her DNR just as others were putting them in place. At Massachusetts General Hospital, where Hodges gets her cancer care, doctors told stories of patients entering routine appointments, now virtual, announcing that they didn’t want to be resuscitated if they were stricken by Covid-19. Some asked if there was a form they could sign, to make permanent their desire not to be put on a ventilator. Others, meanwhile, were formalizing, for the first time, that they wanted every possible intervention to keep them alive.
In a way, the pandemic had accomplished what palliative care doctors had been trying to do for years. They’d wanted to broach these topics earlier, to give patients the chance to think over those decisions in advance. Otherwise, everything would happen by default: the body giving way, the attempt to revive the heart with chest compressions and shocks, the insertion of a breathing tube. “We default to life. We default to very aggressive care,” said Juliet Jacobsen, a palliative care specialist at Mass. General. “We often just don’t ask people.”
Only in the wake of the coronavirus has the hospital placed palliative specialists in the emergency room, to ask patients what they understand of their prognosis, what they hope for, what they fear. Similar conversations were happening outside of the hospital, too, as if everybody was only just made aware that we’re all vulnerable to death and disease. As Laura Petrillo, another palliative care doctor at Mass. General, put it, “Dealing with cancer is dealing with a lot of uncertainty. … For people with cancer, the rest of America is coming into a space they’re very familiar with.”
But even among Americans with advanced cancer, Hodges’ initial decision was hardly the norm. In 2014, when researchers surveyed over 300 patients with treatment-resistant or metastatic cancer, 76% replied they didn’t want heroic measures, but only 41% of them had a DNR on the books. A 2018 study of some 450 pancreatic cancer patients at a single safety-net hospital reported that 30% had that kind of order in place two months before they died.
“Our general societal philosophy about cancer is … keep trying things until there’s nothing else to try, or until we’ve made them so sick from treatments that we can’t do any more,” said Lecia Sequist, Hodges’ oncologist at Mass. General. “We don’t talk about end of life. We would rather look the other way.”
Hodges couldn’t look the other way. For decades, death has been an element of her daily work. She is a biologist of the eye, studying the cells that keep its surface moist. As a lab manager at Massachusetts Eye and Ear, part of her job is to order and unpack tissue recovered from cadavers, shipped from a Michigan-based eye bank for $125 — just enough to reimburse the cost of collection. The vials arrive in boxes packed with ice, each one cradling a little glob of eye white, somewhere between the size of a nickel and a quarter. It’s not as delicate as you might expect: less the gelatinous consistency of egg, more like the fat you might trim off a piece of raw chicken, solid and elastic.
Hodges teases apart the layers with a scalpel. She needs to separate out the mucus-secreting cells; otherwise they’ll be overpowered by fibroblasts, which, in the eye, produce the organ’s scaffolding, but become Petri-dish bullies when grown in the lab. She peers into the dissection microscope. When the outermost tier of goop is detached, she does what she can to spread it thin. She’s so familiar with the conjunctiva and its components she no longer bothers with all the syllables. To her, it’s just “conj.”
The lab works with rats’ eyes, too, but their conj is different. What they see in rodent tissue they need to confirm in our own. Hence placing orders with Eversight, the nonprofit that collects eye sections or whole globes from hospitals, preserves them as needed, and then ships them out for corneal transplants or experiments. Routine as it is, Hodges can’t forget where those samples come from. “At lab meetings, when we say, ‘We didn’t get any human tissue this week,’ we’re like, ‘Maybe that’s a good thing; maybe that means nobody’s died,’” Hodges said.
You can’t help but be matter-of-fact about your own body’s transience when handling other people’s donated bits. But it was also something Hodges chose. She’d grown up Presbyterian, and she liked church some of the time — carols at Christmas, lilies at Easter. The rest of the time, she could take it or leave it. After college, she left it. “I was a scientist. I believed in evolution and the scientific principle. God didn’t really have a place in my world,” she said. “But that certainly changed after my diagnosis, which I think probably happens to a lot of people. You start to think there’s something beyond, or you hope there’s something beyond.”
The return to belief didn’t come as a flash, but as a gradual realization. “I remember being angry at God,” she said. “I got thinking how silly that was … how can I be angry at something I don’t believe in?”
She felt like she’d been robbed of years. On Sept. 12, 2016, she’d arrived at the emergency room with a bit of weakness in her left arm and leg, and went home with the dread of knowing there was some unspecified kind of tumor in her lung and brain. It was hard to believe. Good news was suddenly relative. Good news was that the three growths on her gray matter weren’t too deep, and could probably be cut out without much collateral damage.
She kept herself together while at the hospital. Only once she got home did she break down. She couldn’t eat. Still, her mind tended toward the tangible. That same day — she thinks it was in the kitchen — she told her husband she wanted no extraordinary measures, no ventilator.
He understood. One of his aunts had been found unresponsive, and didn’t have a DNR. She’d been clear that she didn’t want to be on a ventilator, though, and his mom had had to go argue with the doctors until they unplugged her. His “book aunt,” he called her: She was a teacher who always gave books as gifts, and would grab you by the jaw and pull you close if you misbehaved. “I joked with my mother afterwards that if Aunt Julie had regained consciousness and found herself on the ventilator, she would have cussed out my mother and said, ‘You knew I didn’t want this!’”
Hodges and Larry Bair had met as teenagers, in Temperance, Mich. For their first date, he took her out in his family’s ’74 Impala. The car was tan, and wide as a boat, with a mechanism that felt the weight of a passenger in a seat and stopped the driver from turning the ignition unless everyone was buckled in — a safeguard you got around by saying, “Hey, lift your butt so I can start the car.” He drove her down to Toledo. They ate fried ice cream at Chi-Chi’s.
Bair is an electrical engineer, a computer chip man. He was famous for his breakfasts. After sleepovers, he’d make huevos rancheros for his kids’ friends, and they’d get home and complain to their parents that breakfast was better at the Bairs’. He kept it up even after the kids were grown and had moved away, just him and Hodges.
Before the pandemic, they woke together at 5:30, so she could get to work, and so he could fix her breakfast before heading back to bed. He stood in the half-light of weekday mornings, scrambling eggs, stir-frying last night’s meat with onions and peppers. She’d catch the 7:20 from Littleton into Boston, read the Globe on the train. By 8:30, she’d be in the lab.
For about 10 of the years she’d spent at the bench, she’d been observing the molecule that would end up making her sick. It was an enzyme found all over the body, straddling the boundaries of cells, sometimes spewing out the main ingredient of mucus, sometimes helping them divide. It keeps our insides slick, sparks the growth of new skin to paper over a cut.
Hodges was tracking it in goblet cells, which were well-named: They look a bit like drinking vessels, with the granules that make eye lubricant in the cup part, right near the surface, and other organelles in the handle, deeper inside. EGFR was close to the base, where it could pick up the chemical messages carried in the blood. When some of those signals came in, the enzyme would flip on the cell’s mucin-making machines, with calcium released like the smoke from a factory.
In the hope of treating illnesses that dried out the eyes, the lab fed chemicals to goblet cells, to see what spurred or clogged up production — and the calcium was often quicker to measure than the mucin itself. Hodges would bathe the cells in a fluorescent solution, so a computer could read EGFR’s activity through color changes: billows of calcium glowing red or white, rather than the usual, otherworldly green.
All of that was in her head after her brain surgery, when her biopsy results came in. That same enzyme had gone haywire in her lung, the result of a mutation. It was strangely comforting to be so familiar with the microscopic part of her that had become such a threat. She understood that such errors could arise with every cell division, understood exactly why this one spurred cell growth. That made it easier for her to deal with.
It also made the cancer easier to treat. Since the early 2000s, there had been a suite of drugs designed specifically for tumors with that mutation. Hers was about as good as an advanced lung cancer diagnosis could get. Bair’s father had died of a different form; the couple knew how quickly the end could come. “That had much shorter overall survival rate, basically three to six months without chemo, six to nine months with chemo,” Bair recalled. “He did chemo, lived nine months. With EGFR — ooh, you hit the jackpot! When she was diagnosed, the overall survival rate was 33 months. We were like, yes, 33 months, excellent!”
The feeling didn’t last. About a year after Hodges had started it, the regimen tailored to work on that enzyme proved no longer sufficient. The cancer was spreading, ballooning the sac that lined her heart, throwing off its rhythm. Doctors said they might have to operate, and the thought terrified her. She knew she wasn’t all that far from needing her DNR.
The cancer had learned how to evade the treatment, “like a detour,” Sequist explained. “We always check with a biopsy to see if there is a new, second mutation, to see if we can hit that one too.”
They found one, a different enzyme, also involved in cell division, which could potentially be stopped with an experimental pill. She was so sick that even the most basic of activities were difficult. She struggled to breathe, struggled to eat scrambled eggs. Her lymph nodes so swollen she could hardly take the new medication. She crushed it into applesauce, and forced herself to swallow, while her husband pounded her on the back.
Then, the swelling went away. She could take pills with just a glass of water. She didn’t need heart surgery, felt farther and farther away from a time when her DNR might go from hypothetical document to definite fact. Three days a week, she was back in the lab. Two years passed. The pandemic arrived just as she and Bair were traveling in Cambodia and Vietnam. They were steps ahead of the virus in every city. They were some of the last foreign visitors to Angkor Wat.
Bair began worrying about the possible rationing of ventilators soon after they were back. He heard about it on the radio, saw posts about it in lung cancer Facebook groups. “If you’ve got lung cancer, where survival is typically under five years, you’re kind of screwed,” he thought. “I remembered that Robin had a DNR, and I thought, ‘Well crap, if she’s got a DNR … they’re definitely not going to put her on a ventilator.’”
He brought it up with Hodges, and Hodges brought it up with Sequist. When Hodges had first signed the DNR — sitting in the neurosurgeon’s office before surgery, having just viewed cross-section after cross-section of her brain tumor blown up on a 27-inch screen — it wasn’t a document she thought she’d return to. It was like a time capsule: a note she’d written on behalf of her future self, to be read when she was failing and could no longer speak.
When she’d pictured her organs faltering, she imagined metastatic cancer, and nothing else. She hadn’t thought about the possibility of a car crash or some other accident; she certainly hadn’t thought about anything like Covid-19. She was among the healthiest of Sequist’s patients. Some were too afraid of the virus to want to come in to the hospital for infusions. Others came in frail, wanting to keep on with drugs that weren’t doing much for them, indignant that their oncologist would even ask about their end-of-life wishes.
Hodges’ outlook depended on the day, and even the time of day. There were days when her breathing was easy, and days when it no longer felt worth it to make any plans. The answers could fluctuate with the weather. But here she was, having a virtual visit with her oncologist, discussing plans.
“I had wondered how I might do if I were to get Covid and have to go on a ventilator. Would that just be the end? Should I even consider that as an option? And obviously she doesn’t have the answer to that question. She doesn’t have a crystal ball, but … she thought my quality of life and life expectancy are very good for at least the next year or so.”
Not long before that conversation, Massachusetts asked all nonessential workers to stay home, and in-person research halted for Hodges’ team. “It happened pretty quick,” she said. “They told us they would allow one person into the lab to freeze down cells or finish up the last little bits of experiments … use up all the animals that we had.”
Now, with no train to catch, she wakes at 8, after Bair’s already up and working, eats the breakfast he’s left for her. Then she sits on the couch in the family room, writing up the backlog of experiments her team hasn’t yet had time to analyze, watching the bright squabbling of blue jays on the feeder. She misses the Zen of the lab, the green glow of fluorescent goblet cells, the tussles with conj under the dissection microscope. Most of the time, she’d be standing up, drawing liquid into pipettes, taking tubes from the incubator and popping them into the centrifuge — “kind of like cooking,” she said.
As cancer meds go, hers aren’t bad. She’s learned the best time to take your anti-nausea medication is an hour before the pill that’s going to make you nauseous. Still, she’s occasionally sick, and Bair rubs her back as she vomits. She’s easily winded and gets muscle cramps and swollen legs — all annoying enough that she sometimes needs to be cajoled into taking a walk. But Bair cajoles her, and walk she does. They’ll stroll up their cul-de-sac to Spectacle Pond Road, along Hartwell Avenue, up to the town water pump, an unremarkable brick-red edifice you could easily mistake for a shed or a small house.
Hodges is matter-of-fact. She knows she may not live long enough to meet any grandkids. She’s signed up as an organ donor, but given the cancer, she isn’t sure how much of her they’d want to take.
The molecules she’s thinking about are different now, if only slightly. These ones are found in the tear film that washes over the cornea, to keep our vision clear. Not long ago, her team realized they were still missing a few experiments: Just a little more data, and they could safely say they’d pinpointed a single protein’s role in stimulating mucus in the eye. They wondered if there could be an exception to the shutdown, just one lone researcher briefly allowed back into the shuttered lab. They wondered if they could still get a few vials of conj.
Thank you for your outstanding article about Ms. Hodges and her continued path of the ups and downs and sideways paths during difficult cases of cancer care. Your and her thoughtful, frank and combined sharing has given me tears of relief, sorrow, hope and inspiration. My situation is very similar in many ways to Ms. Hodges’ story with respect of facing inevitable death from my metastatic cancer diagnosis when I was 46 years old. My original cancer was proven to have been caused from my environmental exposures during 911 calls to a U.S. weapons production plant producing nuclear triggers. 20 decades as a 1st Responder and Hazardous Materials Tech Level 2, WMD, biological, chemical and nuclear warfare training taught me to view imminent dangers objectively. On emergency calls 24/7 for over 20 years had honed my training to explore my situation as objectively as a scientist. My job required me to carry, in addition to standard N-95 medical PPE, my NAAK kit (nerve anti agent kit.) These experiences made my decision to have my written DNR in my medical files. After all, I was young, fit, healthy and “invincible.” My DNR was a relatively easy choice for myself. My terror of leaving my 2 minor children alone because I was a single mother, without even child support, I promised to keep myself alive as best as I could for their needs. I also knew it was best for them to not be afraid of my endless cancer surgeries, treatments, and my suffering consequences of both. I wanted them protected. Instead of my ending up on life support by default, they would see me dying with dignity, quietly at home under hospice palliative care with kindness. Like Ms. Hodges, I viewed my cancer as if it were a foreign and unwelcomed genetic mutation to be carefully analyzed. Our similarities continue as her “conj” scientific research indirectly( perhaps someday directly) benefits me. Another side effect of my cancer treatments is the disintegration of my corneas. My “conj” has been assaulted, along with destroying my lacrimal ducts. Multiple eye surgeries include external incisions under my eyes to create artificial drainage with temporary tubes threaded through my eyelids and into a surgically drilled hole into my nasal passages. Chemotherapy agent placed inside holes. Occular resurfacing with amniotic tissue graft, IPL laser beams scorching my entire eye rims to battle the excruciating pain from dried and damaged corneas from nuclear radiation treatments. Newly diagnosed breast cancer led me along the path of bi-lateral mastectomy, and 3 more breast surgeries within the last 5 months. Again, the nuclear radiation exposures placed me at high risk. Also at high risk for lymphoma, leukemia, and colon cancers from radiation exposures. Once again, like Ms. Hodges, the DNR order is under re-consideration due to cancer patients being at higher risk of infections and complications due to Covid-19. Your article about Ms. Hodges surely must be thought provoking and action oriented for all who are brave enough to face their own decisions about his/her/they need to place DNRs in writing in medical files. Also, to make decisions before illnesses inevitably arrive. This provides valuable opportunities for anyone to discuss with loved ones, as well as, with the physician– in private–if final choice is contrary to the loved ones’ input. Too often in our Western society, the fear of death is ignored. Then it becomes amplified during a crisis. It has been heartbreaking to observe this predictable scenario on so many 911 calls and family battles in hospital rooms over “pulling the plug.” Please follow in Ms. Hodges brave and logical steps to make DNR decisions, re-evaluate, and change your choice if wanted. If you won’t do it for yourself, please do it for your loved ones. When it’s our time to go, leave behind your loved ones with grief for loss–not agony to decide your final fate because you were too afraid to protect yourself and others. It may bring you all closer together in peace during this transition in our new world where too many people are dying and their bodies stored in makeshift morgues. No contact. No final goodbyes. Wishing everyone health and safety, love and kindness, truth and honesty.
At least this lady was given a choice. Many of our Loved ones, such ad my Husband weren’t so fortunate. We refused Hospice/Palliative care and DNR. My Husband adamantly stated he did NOT want to die. He stated he wanted treatment. He was instead treated for nothing, put on NON-consensual Hospice/Palliative care without our knowledge and was ILLEGALLY DNR’D. NO consent for anything. I couldn’t figure out why he was being refused treatment including a transfer to another Hospital that I set up. They wrote him off the day he refused to give up a healthy kidney that his sheisty Doctor wanted to remove, admitting that the only way they would know if he had Kidney Camcer was to remove it. There was NOTHING wrong with his kidney. My Husband was Medically Murdered by the people he entrusted to take care of him. Patients have no say at this Nashua, NH Hospital and a Catholic Hospital at that!
Amazing what these doctors and hospitals get away with….remember “first, do no harm?” God.
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