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Monday, June 16, 2014

31

$3 Million for 7 Weeks

deckThree weeks after my partner Randy died of metastatic cancer, I called the oncology resident who had been his on-call doctor. I remember exactly how long it took me to make that call because I was in a place of noticing how long things took, with mild interest, like: when will I feel hungry? When will the best part of every day stop being when I’m asleep?

It took me three weeks to work up to hearing Randy’s doctor’s voice on the phone and simultaneously make words in English.There was something I wanted to ask her or, more accurately, something I wanted to make her say.

“If you’d known how much time he had left,” I said, standing on our tiny back deck, looking over the early-spring woods, “would you still have given him chemo?”

What I remember is that she paused very briefly, and then she sounded choked up. That satisfied me, as if she were my enemy showing overdue weakness. “No.” she said, “Not if I’d known how long he had, no.”

“Thank you.” I said. We exchanged some version of “Nice working with you” and then hung up. I had wanted exactly what I got: an admission, maybe of having fucked up, maybe of the possibility that she’d act differently in the future. That next time she would acknowledge what she couldn’t fix. Show some respect, next time, for the monster: a rare and unbeatable cancer, the oncoming death of a still-young man.

Not long after that, the hospital called me. They were inquiring after the outstanding 10% of his bill not covered by his insurance, the first job benefits he’d ever had. That 10% of the bill for seven weeks of cancer treatment came to $300,000 and change. Randy had had a very rare cancer, a carcinoma of unknown primary origin: the original tumor had been shrunk to nothing by his immune system, but not before the cancer cells mutated and slipped into his bloodstream. So “poorly defined” cancer cells were spread throughout his body, with no point of origin, no tumor to be cut out or site to be irradiated.

In Randy’s case, by the time he was diagnosed he had cancer in his blood and in his bone marrow.

I don’t know why Randy agreed to the chemotherapy. I wasn’t in the room for that discussion. Randy never asked me what I thought he should do with his diagnosis, which had a five-year survival rate of zero. My turn at decision-making came later, when he was admitted for the second time, to Palliative Care. That day I only heard the word “palliative” by eavesdropping at a nurse’s station. By then Randy weighed 128 pounds at 6’2. He needed oxygen because the cancer had blocked some of his bronchial tubes, trapping an infection. They could have removed those particular tumors, but the lead oncologist explained, “You’ll be back here in a month. And you could die on the table.” I don’t remember Randy speaking, just leaning back into the pillows and shaking his head.

Randy had given me medical power of attorney, luckily. He was drifting in and out of lucidity. One of his oldest friends, a general contractor and a robust guy, threatened to fireman’s-carry him out of the hospital so he could die at home, but my father’s connections at another hospital allowed us to get Randy into hospice.

He spent one more night in the hospital, with the agreement that we would be leaving in the morning. I remember sleeping next to him and waking up and looking at the clock at 5:30. It was softly gray and he was sleeping peacefully and I lay there soaking up the closeness and the quiet, knowing that the hospital would be coming to life around us soon and there would be a lot to do.

Then it was the morning, and there were pieces of paper to be signed and the terrible waiting around for the paperwork to be done and the ambulance to be available and someone important from hospice was there to help expedite for some reason, because she was a friend of my father’s maybe. She was wearing a suit and pearls and was very nice but when she said, “I don’t know how you’re being so strong” I snapped at her, I don’t know why, and said, “I think that when people say that they mean ‘so glad it’s not me.’” I’m sure she was used to people needing to be angry; I hope she took it in stride.

The hurry went on as Randy’s breathing got more ragged and he closed his eyes more often, and the adjustable bed and the morphine pump were located and assembled and then we brought him home. He rode in an ambulance with a DNR order I’d signed, and I think maybe someone else drove my car home and I rode with him, but my memory here is patchy. I remember that my brother, bless him, and another old friend of Randy’s went to Kmart to get sheets that would fit, which seemed strange to me.

“This will not take that long,” I thought, watching them make the bed. “It won’t matter if the sheets don’t fit.”

I was right; Randy died around 8:00 that night. The only worthwhile treatment of the $3,000,000 of medicine administered by the hospital was a high dose of morphine, invented in 1804 and with a co-pay of $10 for, as it turned out, more than we needed (the fancy patented patches hadn’t been strong enough). From the beginning, from his diagnosis, when they said that his best-case scenario was an extra year, he lived for seven weeks.

Still a year would have been nice with nothing but $10 morphine and chicken soup. Five or six months even, without the nausea and the starving and the poisoning. It was Randy’s decision, and the doctors’ decision, and it’s hard for doctors to say, “We can’t help you.” That’s not their job: it’s not what they pictured themselves doing in medical school.

But chemotherapy made Randy’s remaining life shorter and worse. With his diagnosis, it’s hard to see how a doctor could have thought it was the right course of action. UNC is a teaching hospital; maybe he was a useful study. Maybe it always seems better to spend $3,000,000 than $10.

Randy and I had reached the place so many twenty-something couples find themselves at thirty-something: trying to figure out if we should stay together. We’d started couples therapy a few months before he got sick, and stopped when his therapist said he should address his depression first. (Depression is sometimes a symptom of a malignancy, it turns out.) A lot of our similarly late-blooming friends decided to have kids. Others split up. Our story ended differently.

When I think about that story, its arc and its particulars, I usually picture us lifted up and carried by our friends, who crowded the hospital hallway like a subway car and filled the house on the night he died. And I see his doctor sitting next to his bed and extending her hand, saying solemnly “Thank you for fighting with us.”

And I wonder if she meant it the way I interpret it now: that he had been indulging them, their scientific curiosity, their lack of humility. It’s hard for me to think that no harm was done.

 

 

Amanda Yaggy is pretty thankful to be back in New York. When she's not at her day job she reads, writes and plays with cats. Procrastinate with her at @amandayaggy.



31 Comments / Post A Comment

lyzl@twitter

This story is so perfectly at the intersection of health care, love, loss, cost and worth--where there are no easy answers. Thank you for writing it.

Laura Bracken@facebook

As one human being to another, though we will never meet, I am so sorry. Life is not fair and sometimes everything just sucks. So much suffering. Hang on.

myaxolotls

This is a beautiful and heartbreaking piece, but I think the oncologist was treated unfairly. The author states that she doesn't even know why her partner chose chemotherapy, yet frames the story as if the oncologists suggested it just for curiosity or to somehow financially benefit. I'm not saying that couldn't possibly be the case, but there really doesn't seem to be any evidence of that.

reader123

Thank you so much for writing this very brave article. It brought back many vivid memories of a very similar experience of my own. For some reason I find comfort in the idea that my loved one, faced with death out of nowhere and too young, wanted to try anything to live as long as possible (with the exception of resuscitation), even if the lack of a forthright prognosis probably led to more suffering than was necessary for everyone involved.

demac

Thank you for telling this story. I can only imagine how painful this time must have been for you, and how painful it is for you still.

I have been on both sides of this situation. My grandmother, who helped raise me, died of inevitably-fatal glioblastoma, a brain cancer; when it was discovered, they predicted she had only months to live, though she died in weeks. The doctors told us that radiation might help her with keeping her mental state intact for a little longer, and she wanted to make it through to the new year a few months away, so she went through a course of radiation at a university hospital, which was excruciatingly painful - and scary for a woman who had never learned to read or speak English. We all decided shortly after starting the course that it wasn't worth it and stopped. She died weeks later, either on New Year's Eve or on New Year's Day - no one actually knows, because we discovered her death a few hours into the new year. We all like to think she made it into that next year, though.

It was an ugly death, as she had lost most of her bowel and bladder control, and had just defecated on herself on the way to the bathroom a few hours before. The burns on her head from the radiation were still visible at the funeral. I don't think I've ever been so angry and hurt at the same time.

And yet, a decade later, I am a doctor who has taken care of many terminal cancer patients. I can say that every one has stayed with me in one way or another, and I think that's true of all doctors; even if the names have left us, we still remember things like favorite desserts (which we buy for them personally from outside the hospital, because there's no brownie like Rosie's) or faces (eyes, smiles, dimples). And we remember family members, especially the ones who break our hearts with their crying, because all we want to do is cry too. (And sometimes we do.) But we have too many other patients to take care of, too many tests to order, too many labs to analyze.

I've cried and hugged family members, and I worry about adding my pain to theirs. But I do feel that it might be a good thing that they can see how much I care about this person that they love, that I'm not just a cog in the machine or a faceless representative of death.

I've taken care of many people who had little time left, and I have to say, at least from my experience, we try as hard as we can not to give false hope. (If for no other reason than hope has, in studies, shown no effect on survival rates or time to death - and because we wouldn't want doctors taking care of us to give us false hope.) We will tell people how unlikely treatments are to help them. I have told people that we couldn't help them multiple times, and each time is excruciatingly painful, because we all went into medicine to help people and having to tell them we can't and they will suffer because we can't is the worst thing to have to do.

The problem is that there are many, many times when we just don't know what will happen in the next few months or even the next few weeks - because, as far as modern medicine has gotten us, we're not God and all we have is 20/20 hindsight, not foresight. I promise you that, if we could, I would never - for a million dollars, for even another day with my own grandmother - put someone through the pain of chemotherapy if we could see beforehand that it wouldn't help, or that it would harm more than it helped at the end of life. And I think most doctors would agree.

There are some people who don't want to know if a treatment's likely to help or choose to try anyway, even if we ask in different ways, even if we disagree with their choices to pursue treatment. And, because at the end of life the most important thing we can give someone is their freedom to live what remains of their life as they choose, we will give someone chemotherapy if they want to try.

A lot of times, it is because, like my grandmother, they have some date they want to make it to. Or because they can't imagine going out without a fight. Or because they feel that they might be that one in a million that will beat the odds (though we try to explain the statistics as well as we can). We do our best to encourage hospice (preferably home hospice services, so people can be as comfortable as possible, at home with family and in familiar surroundings, when they pass). Almost all my colleagues agree that, with a terminal diagnosis, we wouldn't bother with treatment - we'd quit our jobs and go find a nice beach. And we tell our patients that when they ask us, and we will try to persuade people if we feel they're making a clear-cut bad decision. But unfortunately, a lot of times it's not that clear-cut.

It sounds like you're still angry with the doctor you spoke to on the phone, and towards the university hospital and hospital system he was at. I cannot speak to their missteps or mistakes, and I hate - HATE - that you had to deal with medical bills that are astronomical, and accompany a choice that only made the quality of your partner's end of life worse. And that you had to deal with them so soon, when he had just passed and your grief was raw and all-encompassing.

But I can say that hospitals are paid by insurance by the admission (at least in the state I live in), and the longer a patient stays or the more things that are done to that patient, the less overall money the hospital makes because the hospital will pay for the treatment regardless of the payment. The bill a patient's family gets at the end of an admission has little to do with what the hospital actually gets from the insurance company for services (and thus, little to do with what the services actually cost in terms of man-hours or wholesale cost of equipment). And doctors are not paid by the service while a patient is inpatient, and I don't know any doctor who would give an outpatient chemotherapy just to boost their income.

The other thing is that, though you didn't mention if your partner was in a clinical study or not at the end of his life, but (perhaps sadly, as they can help) most people are not and the hospital has no incentive to study him. Additionally, as a matter of ethics we would never keep people in the hospital or treat them against their prior wishes - that's why the drop-out rate in studies, especially for terminal cancer, tend to be relatively high. There is an ethics committee involved with every study, and that kind of behavior would be a very, VERY big issue.

When I've been that doctor at the end of a hospital stay, the doctor who's said, "Thank you for fighting with us," I've meant it the way that I think the doctor you wrote about meant it: thank you for helping us give it our best shot possible. We don't always agree that it should have been done, but we take our lead from what the patient wants.

And I've been that doctor who choked up on the phone, because if we could have known what would happen, we would have made different decisions and saved someone a lot of pain. But we make our decisions based on the best information we have available, and based on what a patient wants; we live with our own pain, too, that we cannot save everyone and that we may, in fact, cause harm in trying to help. It hurts every time that happens because all any doctor, from the time they were little to the time they take the Hippocratic Oath, has ever wanted to do is help. With my grandmother, even though I was a ball of rage when she died, I eventually realized that.

I am so, so sorry for your loss. I don't want to diminish your grief by addressing your anger towards these doctors, but I wanted to tell you how much doctors care and try to do their best for their patients.

garysixpack

@demac
An old philosophy professor used to love to ask, "Are you God?" By that, he meant, "Are you omniscient? Are you infallible?" And if you are not, you should not be judged as if you were. You can only act to the best of your ability and to the best of your knowledge. And learn from the experience after you are done, of course. It's folly to think you can get more than that.

Amy Gremillion@twitter

@demac The Hairpin should publish this.

confection confession

@demac thank you for writing all this out much more eloquently than I was going to. I completely agree. it is devastating to read about so much pain and loss of life so early, and I understand why the author is angry. but I think the way she writes about the oncology resident who treated him, and the hospital he stayed in, is really unfair. the resident was doing what she and her patient had decided on together as their chosen course of treatment.

readey

@demac chiming in to say.... I agree with Amy Gremillion@twitter!

If writing is an outlet for you, I think the ladies (and gents) of the hairpin would really appreciate reading more. You're writing is really interesting, and you obviously have interesting life experience. I'd love to hear more from you, and to see the Hairpin (continue to be) giving a platform for even more voices from "ordinary" (/extraordinary) folk, who are not necessarily "writers" as their main thing, but "people who write" (although, of course, I love that there are folks who dedicate themselves to writing as their main passion, too!)

chevyvan

I have a close relative who has a surprisingly similar diagnosis to your husband's diagnosis. The docs don't know where the cancer originated, but it has spread, and praying for a miracle is her only recourse.

The doctors offered her chemo, but both oncologists (she got a 2nd opinion) made clear that chemo would make her sick and would be unlikely to prolong her life. She has decided against further treatment. But they did offer it to her, and told her that she could change her mind if she wanted too.

I am so sorry you were left out of this discussion, no matter what the doctors told your husband. If you don't know how your husband came to this decision, there is no way I can presume to know. I only hope that you can find some peace. I am terribly sorry about your husband. You are not alone.

Melusina

Just a question for the editors really -- is it $3 million or $300,000? Both figures are mentioned, and it does make a difference, I think.

astauff

@Melusina The $3 million is the total cost, the $300,000 is the 10% that is owed after insurance.

Melusina

@astauff Got it, thanks. I guess I couldn't get my head around $3 million for 7 weeks, but there it is.

Brian D

You have a good heart, Yagster. Randy was lucky to have you by his side.

Amanda Yaggy

Thanks to all of you for reading! I just wanted to clarify that Randy and I were never married, so I wasn't responsible for the bill. An important detail.

readey

@Amanda Yaggy

Thanks for sharing your story... it was really evocative of how it feels in a way... sort of how stunning it is to encounter that level of devastation, and how tender tender tender it is. I hope that you have LOTS and LOTS and LOTS of sunshine, rain, love and comfort to let those deep crevices that are left after such an experience get filled up with love - both the cause of so much pain, but also the answer to it....... especially complicated since you guys were going thru so much before.... wishing healing for you.

MsMisery

I am not surprised by the figure. I work in a health insurance related field and I have seen the cost for chemo drugs. They vary across insurance and zip code, but are always in the tens of thousands PER DOSE. So if you are on chemo for *months* then millions could come easy.

muddgirl

I don't talk about this a lot, because in most ways it's not my story to tell, but my 30-year-old husband was diagnosed in January with a rare cancerous tumor. While navigating the health care process we talked with about 5 different doctors with a wide range of experience with this tumor about his prognosis. Two different expert oncologists gave us widely different impressions of where he would be in 5 years.

We want our doctors to be impartial, unbiased experts. They want to be experts, too. But medicine is not an impartial science, and in the complete absence of certainty they bring their own personal biases to bear - for treatment or against treatment; for fighting to live or for fighting to die peacefully. Too, patients and caregivers have their own biases - my husband and I have walked out of dr meetings with completely different impressions of what was discussed.

There's been a lot of talk about "end of life" care decisions, but not a lot about if we need impartial (as far as that's ever possible) guidance for during-life care decisions. And this goes both ways - not only do doctors over-state survival chances when they unconsciously want to treat, but they also overstate the hardships of long-term disabilities when they do not want to treat.

muddgirl

@muddgirl And I should add that I believe that every doctor we've worked with has been trying to do their very best by their patient, but at the same time I'm glad I have been able to be with my husband and the doctors as much as possible to provide another viewpoint, another set of eyes and ears.

Kendall Helmstetter Gelner@facebook

I myself think I would refuse chemo, but it's a hard thing to say that for sure when you could have even another year of living, to do things you might not be able to do otherwise... but then again like you say, the cost of it in health is tremendous so are you really living longer?

But I just thought I should say you should not blame the doctors too much, they are trying to save people and in the end it was his choice to take the chemo. He may well have decided differently if he'd known you would be stuck with the bill; I know it would make a big difference to me.

Hopefully in time you can heal and reach a better place.

Kevin Funderburk@facebook

This has really opened my eyes.

Saat Edward@facebook

Thanks for broaden my horizon.

Ember31415

I'm extremely sorry for your loss. I cannot imagine what it would be like to lose my significant other, especially at such a young age. I wanted to give you my perspective as a medical student. I am fortunate to have been trained to help patients make decisions rather than making decisions for patients. For your resident, I don't know whether this is true. What I can say is that most residents mean well. They are overworked and sleep deprived to a zombie-like state. In the end, they can only give so much energy to each patient.

I don't know what you do for a living, but imagine what it is like when every decision you make can cause a great deal of human suffering. Imagine a world where a typo could kill someone. While I understand your frustration, I hope you can empathize with the resident who almost started crying on the phone with you. We are human too.

I don't want to justify a poor decision by a medical doctor, but who could possibly say how long someone is going to live. We can't even predict the weather that accurately. I think it is time that we recognize, as a society, that death is both inevitable and unpredictable. A best case scenario of 1 year does not mean I expect this patient to live 6 months to 1 year. It means I would be surprised to see this patient make it more than a year, but we don't always say that, and we should. It is a disservice to both the patients as well as their loved ones when we speak in vague terms to make the situation seem less dire, and that is what I suspect happened here.

Again, I am so very sorry for your loss, and I can't comprehend what your situation is like. The best I can do is to imagine losing my significant other, which is horrible and unfathomable. Please, celebrate life while you can, and do your best in life to allow the worst situations make you stronger. Thank you so much for your story.

No cancer

I'm a 20 something year old doctor who recently battled with cancer and almost died, so I have perspective of both the doctor and the patient. As a doctor, I can say that we can almost never predict when a cancer patient will die. The best we can do is give an estimate, but any estimate usually causes patients to be over optimistic. Most doctors hope for the best as well, and when there is even a tiny chance, they would like to take it. Having said that, we have taken an oat that says we will let the patient know about this and help them make the right decision. What happens is most of the time patients would fight, even for that 1% chance, even if it will kills them. There have been times when I had to step in and let the patients family know that the path they have chosen will only prolong death, and will not prolong life, and I would never do this to my own family member. The reaction from patient and family to this statement is mixed. Once a family member got angry and accused me of not wanting to take care of her mother and wanting her die, which is a very insulting thing for a doctor to hear. However she needed to know what path she was taking. I needed to let her know the truth.
Now as a cancer patient, things are completely different once you are on the other side. Based on my medical knowledge, I know certain chemotherapy would be futile, and I knew I did not want to get radiation therapy because of the long term side effects, but I certainly felt a pressure from my own doctors to do certain treatments I did not want to do. What I ended up doing was learning more about my disease than my doctors and consulting others who have treated my rare cancer, then I opted for the treatment options that came my way as I went through my cancer treatment. I guess doctors are the worst patients.
What I learned was cancer is terrible, and no matter what happens it there will be a lot of pressure on the patient, their family, and the doctors. When a patient dies everyone is frustrated, angry, and would want to just release that pressure they have inside, but the reality is they all just went through one of the hardest life experiences and they all made the best decisions based on what they all thought was the best thing at the time. You can always say, in retrospect if I did this then things would have been different, but the reality is no one knew the future.

ErikaOnFire

I find it curious that some think that the author is begging for explanations, and would sincerely like advice from strangers telling her what she should and shouldn't do, and how she should and shouldn't feel. For me, this essay is about the hard cut of loss, the ravines that we fall down and the fact that sometimes there is never a way out. I don't read this as an angry essay, but a loving essay. What propels it forward is the fact that she loved Randy so damn much.

Amanda Yaggy

I'm honored that people are putting so much thought into their responses; it means a lot to me. Here is the top result from a cursory Google search I did just now: http://www.cancer.gov/cancertopics/pdq/treatment/unknownprimary/HealthProfessional/page1
All cancers, even terminal ones, are not created equal. Prognoses have improved somewhat since Randy was treated (his was an adenocarcinoma), but we can't say that we didn't know what the outcome would be.

markS

Thank you for writing this, I'm in kind of a similar situation as Randy, I'm still in a position to make my own medical decisions, and I've decided not to take the Chemo they're trying to shove on me. For now, my decisions are guided by what I think's best for my family,and not trying to create some false hope. So thanks for sharing, and making this a bit easier, yeah go morphine!

Amanda Yaggy

@markS Thank you for talking about this; it's a brave thing to do. I'm glad that you feel you can make your own decisions about what happens next. I'll be thinking about you.

279th District Court

I am much less coherent than I would like to be, because this article is so timed as to coincide almost perfectly with my father's birthday. Seven and a half years ago, he died of terminal brain cancer, and I only found out two years ago that my mother knew he was terminal from the start. He did radiation, chemo, and two separate experimental trials, and my parents always gave my siblings and me the impression that he had a fighting chance.

My mother told me that after the first surgery (of two) to remove the brain tumor, when it was tested for malignancy, they declared my father Stage Four. The nurse told her that most people in this position lived around a year -- which is damned close to exactly how long he lived from first diagnosis (one year and four days). And then the nurse told her that it probably wouldn't be good for my father to know this part.

I was young and more vulnerable than I understood at the time so I don't know if I would really want her to have told me. Maybe it would have been worse. Maybe it wouldn't have been so hard when the end came. Maybe it would have been harder for everyone in the end if we had known. Maybe it would have even been harder on my dad himself.

But I find myself furious that my mother felt she had to carry this knowledge entirely alone. Our conversation didn't rule out that she eventually told my dad or a close friend, but she certainly never told her nearly-grown children, and my father took almost nine months to despair that the treatments would work and discontinue them.

The very first doctor told my father to find a beach somewhere, but that was before all the information came in.

I'm willing to concede that everyone was trying their best and doing what they thought was right. Following my father's under-informed wishes.

But I can't help but be horrified that they might have kept information from him when he made the decision of whether or not he would suffer for months. Or that anyone would encourage my mother to carry that burden alone.

Thank you for writing about your experience.

Rebekah Huang

Thank you for this beautifully written and painfully honest account of the lack of personal responsibility offered to those making end of life decisions. I'm so sorry for your loss and his short life and what both of you may have missed out on but, you have made the story of his death something that will aid anyone brave enough to read it and apply it to their own mortality. It made my end of life decisions easier to stand firm on...something that is difficult to do while looking into the eyes of loved ones.

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