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Posted by Dr. Lachlan Forrow March 3, 2014 06:36 AM
Teddy would have loved Mrs. Rodriguez.
He would not have loved the way we took care of her at the end of her life. He wouldn't have been satisfied, even though she got “the best medical care money can buy." She really did.
But Teddy would have wanted it to be even better.
Mrs. Rodriguez wanted to die at home with hospice. But instead she died in the hospital.
Teddy would have loved her – she was his kind of person, the kind who has always made America great. Her parents came here (I suspect illegally, but she never said that) when she was a baby. Her father disappeared when she was just 4, I'm not sure why or how. So her mother raised her as a single parent. Mrs. Rodriguez never finished high school – I think maybe because she got pregnant, though all I know is that her daughter Mara (short for “maravilla” or “miracle”) was born when Mrs. Rodriguez was 17.
Mrs. Rodriguez raised Mara alone, sometimes working 3 jobs. But that was okay. Mrs. Rodriguez was never truly "alone" -- a neighbor took care of Mara during the day until Mara was old enough to go to school. Then Mara’s cousins helped out when Mrs. Rodriguez was at work. They obviously were a very close-knit family.
The first time I met Mrs. Rodriguez, I had been called to try to help with the pain that her cancer was causing, pain that at times was terrible, though Mrs. Rodriguez never complained. “7 out of 10” was the highest rating she ever gave it, even when you could sometimes see how much agony she was in. It looked like at least “9 out of 10”, but she never said higher than “7”. I don’t think she liked to complain.
The first time I went into the room, I didn’t see a sick woman, I saw one of the most beautifully radiant smiles you can imagine. My first question to her was “Where did you get that smile?” She didn’t pause for more than a second (or two), just looked at me with her deep brown eyes and said softly “from God.” She smiled again.
I loved seeing the way she looked at Mara with such love. Not just love, but pride. And maybe even more of both -- love and pride -- when she looked at Mara’s gorgeous 4-year-old daughter Bianca. When Bianca was there, Mrs. Rodriguez always seemed okay – more than okay, since being around Bianca’s eyes and smile would make anyone’s day a good day. And the pain didn’t seem to come so often. But Bianca couldn’t come very often, and a hospital room isn’t a very good place for a 4-year old, anyway.
I think Bianca may grow up to be a teacher. When the Spanish translator for my first visit had to leave, I said “I really need to learn Spanish myself. Bianca, could you be my Spanish teacher?” She beamed. I said “Maybe just one word each day. What’s your favorite word? Can you teach it to me?” She paused shyly, and returned to her coloring book. I tried again. “What’s your favorite word? I bet you have one.” She looked up, then looked over at the bed. She paused, clearly wanting to pick her favorite word. Her very favorite one. Then, after a minute or so, she said with great conviction “abuelita”. Mara told me that means “grandma” or “Nanna”.
Even though what Mrs. Rodriguez really wanted was for us to fix her cancer, she knew we couldn’t do that. Only once did I see her eyes seem to tear up about that -- it was hard to get her even to talk about it. And as I think about it, I realize that even the one time I saw her almost start to cry, her eyes were not tearing up about the cancer. That one time was right after I had made sure that she understood that we didn’t have anything to help make her live longer. I knew how strong her Catholic faith was, so I said that "living longer" was “in God’s hands”, and she seemed fine with that.
But then I said that what we could do is make sure every day was as much the way she wanted it to be as possible. And as I think about it, her eyes only started to get watery, that one time, when I asked her “What makes something a good day, a really good day?” She didn’t answer at first. But then I got her to talk to me about Mara and Bianca, and how maybe a “good day” meant a day with them. She immediately agreed. And smiled again. But then her eyes got really watery, though only for a minute.
So it became clear that all Mrs. Rodriguez really wanted was to get home, and have Mara and Bianca there. And not in too much pain (6 out of 10 would be okay).
But as is true for many of my patients, hospice (or more precisely the insurance rules of the “Medicare Hospice Benefit”) couldn’t provide the support at home she needed. 24-hour nursing care would have been way too expensive, of course. If she was sure to die quickly at home hospice might have been able to provide even that – the Medicare Hospice Benefit allows that kind of thing at home for a day or two. But it was possible that she might live for weeks, maybe even a month or more. And the amount of nursing time she would need to make sure the pain and other problems were okay was going to be too much.
So we found another way to get her the 24-hour nursing care she needed.
We got her 24-hour nursing care continuously for almost a month, even though that costs a lot. She got it because we kept her in the hospital, kept her on IVs and antibiotics and an oxygen mask (which she didn’t really want) when she got her pneumonia. We kept closely monitoring her blood tests and xrays (which she didn’t really want, and which didn't make any difference anyway since we could tell she had pneumonia without them).
We even talked at one point about trying one last round of chemotherapy, which she and we knew wouldn’t help. But IV chemo would count as a reason to keep her in the hospital. Or at least a reason that Medicare would consider a good reason -- which means something that is "medically necessary", and requires "hospital level of care". (Medicare only covers things if they are "medically necessary." Fortunately, it covers everything that a doctor determines is "medically necessary." Or at least everything that is "medically necessary" according to Medicare's criteria. And apparently nursing visits to a patient at home, at least more than once in a while, are not "medically necessary".)
At one point we tried an expensive (and wonderful) “interventional pain management” approach to control her pain – a “celiac plexus block” that actually did work wonders, even allowing her to be more awake to enjoy Mara and Bianca's visits.
But Mrs. Rodriguez would have been happier with simple morphine at home, not minding the deep sleep caused by the high doses she would have needed. I imagined her saying good-bye to her family (with her eyes, even if she could never say the words). I imagine her feeling totally "at peace", knowing she was home. Bianca probably have been there in the room, sitting on the floor, working, as usual, on her coloring book. Bianca got it – a “Disney on Ice Coloring Book” -- the time Mrs. Rodriguez took some of the last money she had saved up over the years and insisted that Mara take Bianca to go to Disney on Ice at the Garden, and buy her something special. It was Bianca's 4th birthday, and Mrs. Rodriguez knew that it was probably the last one she could help make truly unforgettable.
But when I talked with Mrs. Rodriguez about getting her home, and when I tried to explain that the wonderful hospice nurses would only be a phone call away, Mrs. Rodriguez for the first time suddenly looked scared to me. This didn’t make sense, since I knew that all she wanted was to go home.
But when we talked a little more, she told me that she would have been scared the whole time. Not in words, exactly, but we could all see it in her eyes. Scared without a nurse there 24/7, because every once in a while in the hospital the pain had come in a sudden, terrible and terrifying wave. Every time, a nurse was always right there with some IV morphine, which always worked in minutes. Oral morphine (we tried that) can take an hour, and an hour is a very long time when you are suddenly in terrible pain. And even if the terrible pain never actually comes back, once you have had terrible pain, worrying that it might come back can be terrifying. Terrifying 24/7, unless you know a nurse is always right there.
And being terrified the pain might come back, and might not go away for at least an hour, would make it hard ever to smile, even when she was looking over and saw Bianca on the floor, working on her coloring book.
We even got Interventional Radiology to come by again and try to replace her “biliary stent”, to drain the bile that was backing up again, causing more pain (and nausea, and vomiting) because her tumor had grown and was obstructing her bile ducts. The first stent had worked for a while, so maybe a new one would now work better. It did. And between the stent itself, the imaging studies before and after it was placed, the radiologists’ time, and a few other things, fixing her stent only cost a few thousand dollars. Which Medicare was happy to pay.
I kept trying not to feel frustrated that being at home with what she needed was impossible, since it would have been too expensive.
So Mrs. Rodriguez stayed with us – she even said “you are my family, too.” She got a lot of superb “medical care” – not just superb, she got the very best. Truly the “best in the world.” It didn’t matter that she was poor – or maybe I should say "not wealthy", since she didn’t seem to know she was poor.
When it came to caring for Mrs. Rodriguez, it was wonderful to know that money was no object, since it is wrong to deny a person the medical care they need based on money. Or at least it is wrong if the person is in the hospital. Or at least it is wrong if the person is a patient who has Medicare. I think that denying "medically necessary" care to someone with Medicare is illegal. (Though it seems to be legal if it is the person who is "illegal").
Besides, Mrs. Rodriguez had Medicare because she worked 3 jobs for so many years, and paid her taxes. At a higher rate (at least as a percentage of her income) than Warren Buffett. She had earned it. And Medicare was there for her when she needed it.
Mrs. Rodriguez died comfortably and peacefully, surrounded by family. But not at home the way she wanted.
Actually, she wasn’t surrounded by her real family – it was 2 am, on one of the few nights when Mara had decided to be home with Bianca instead of sleeping on the cot in her mother’s room. But it helps me to be able to write “surrounded by family”, which I actually think was true, since one of our nurses was in the room, and Mrs. Rodriguez had assured me that “you are my family, too.”
Well actually, the nurse wasn’t exactly in the room when Mrs. Rodriguez died – she was in the next room with another patient. But I told Mara that her mother hadn’t been alone when she died, that her nurse had been “with her”. I didn’t have the heart to say “but only in spirit”.
Teddy would have loved Mrs. Rodriguez – she was his kind of person.
He would have loved Bianca just as much.
Teddy would be glad to know that Bianca will almost certainly be able to go college, maybe with a Pell Grant that will cover her tuition at U.Mass. I bet she’ll be in the Honors Program, which I hear is great. And I bet Bianca will be able to pay the rest of what U.Mass. costs, maybe with a merit scholarship, though more likely also helped by some loans she will pay off. Even if it means working 3 jobs during the summers. And maybe a job in the evenings and on weekends during high school, so she can start to save up. She won’t mind – it’s just the kind of thing her “abuelita” did when she needed to. And I know Bianca would give anything if she can be like her "abuelita" when she grows up.
If Teddy were alive, I bet he could fix things so that in the future people like Mrs. Rodriguez can die at home, with everything paid for and a lot of money left over. Money to pay for other things Mrs. Rodriguez would have loved. Things she would have wanted even more than getting “the best medical care anywhere in the world” during her dying days.
I bet, for example, that with the tax dollars that we spent making sure Mrs. Rodriguez got “the very best”, Bianca could go to Harvard. And just be able to study, without needing to take jobs at night or weekends, even though I know those would “build character”.
So maybe we should fix things, maybe at least here in Massachusetts, since I hear it is hard to get things done in Washington without Teddy there.
Maybe if we fix a few things about the way we currently spend money in the last part of a patient's life, we’ll have some of the money we need to fix the elementary school Bianca will go to next year. And all the buses Mara has to take to get to work, so she’s not late to work, or not so late getting home after work to Bianca. And to make Bianca’s neighborhood safer, so none of her 4-year old friends, when they are in high school (if they haven’t dropped out), are ever in the emergency room with a gunshot wound.
But at least it's good to know that when one of Bianca's friends is in the emergency room, or maybe in the operating room with some of the best surgeons and equipment in the world, and then in the hospital afterward -- well, it’s good to know that they’ll get the best medical care. The best in the world.
Because this is America. And especially when it is a question of possible life or death, we take good care of Americans.
Even if it might cost a lot of money to try one more round of chemo for their cancer (even though it probably won’t work), or when we need money to control their cancer pain (as long as they are in the hospital), or when we need money for antibiotics, oxygen, and Xrays to treat their pneumonia (even if they are going to die soon anyway). Because that's what hospitals are for.
This is America, and when it comes to life or death, how much something might cost -- or whether there might be a better use for some of the money -- is irrelevant. Life is sacred, right to the very end. At least in the hospital.
When it comes to life or death, how we spend our money must never be allowed to matter.
Our political leaders seem to have learned all too well that anyone who asks whether we are "spending our tax dollars on end-of-life-care wisely" obviously cares more about money than human life. Even asking the question must mean you are in favor of "death panels" and "pulling the plug on Grandma."
But Teddy would have loved Mrs. Rodriguez. And Bianca. And if he were alive, he wouldn't be afraid to ask any question that might help us figure out how to take better care of them. Both of them.
And not only in the hospital.
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About the authorLachlan Forrow, MD is Director of Ethics Programs and Director of Palliative Care Programs at Boston's Beth Israel Deaconess Medical Center and Associate Professor of Medicine at Harvard Medical School. More »
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