Why Johns Hopkins Medicine’s Palliative Care Providers Weren’t Pals to Me When My Husband Was Fighting A Brain Tumor
Dear Dr. Death and Nurse Hatchet,
Remember me? Nearly two years ago, Johns Hopkins Medicine consigned my beloved husband to your so-called palliative care without telling me it was effectively a death sentence. Given the time we spent together during my husband’s final two weeks on this planet, when his treatment was at a critical juncture, I’m sure you won’t mind me dispensing with the formalities in addressing you — and besides, this way, we can keep this incident confidential, nice and quiet and swept under the rug which is what Johns Hopkins Medicine would prefer.
And now that I’ve mentioned it, why don’t we begin with the topic of preference. Specifically, don’t you find it just the tiniest bit ironic that I’m inclined to abide by Johns Hopkins Medicine’s preferences, when never once during your treatment of my husband were you willing to abide by mine. Given that nearly two years have passed since my husband’s undeserved death, I imagine that a refresher is in order.
So briefly, here are the critical deets. My husband was diagnosed with a Grade 3 brain tumor in July 2014. After weighing the option, I chose treatment at Johns Hopkins Medicine because of its self-proclaimed experience and familiarity with the most advanced treatments available. That’s a bunch of hogwash, of course — my husband was consigned to the Stupp “Try & Die” Protocol — basically a six-month treatment of radiation and chemotherapy that patients must endure to gain access to trials, precision medicine and the host of other sexy advancements that capture our imagination every May during Brain Cancer Awareness Month. If patients don’t make it through Stupp — and most of the more serious cases do not — there aren’t any second chances.
So in some ways, my husband was fortunate. After an initial decline — likely due to hydrocephalus which heralded his diagnosis and the trauma of radiation and a biopsy — my husband’s cognitive abilities returned. Slowly but surely, five months into treatment, he resumed driving, using his phone and telling terrible puns and became once again engaged with family and friends. The radiographic data showed that I wasn’t imagining this improvement either: against all odds, my husband’s tumor remained exactly the same size. Sure, the tumor didn’t shrink, but given that advanced brain tumors can quadruple in size in a matter of weeks, intertia was cause for hope.
So after a couple of months on the upswing, when my husband lost his appetite and energy, naturally, I was concerned. I tried to make an appointment with his neuro-oncologist when his situation didn’t improve, but the Johns Hopkins Medicine schedulers didn’t seem to understand the urgency of the situation and couldn’t make that happen.
In the interim, I reluctantly agreed to meet with a palliative care nurse — that would be you, Nurse Hatchet. Because in spite of my lengthy back story, the fact that my husband was still in active treatment and my stated desire to address his eating problems, you asked my husband which hospice he wanted to be admitted to. At the time, my husband — who had just had a job interview for a high level programming position two days earlier — wasn’t under the impression that he was on death row, and he responded by saying “Why do I need hospice? I’m not dying am I?” After an awkward pause, you ignored the comment and reluctantly agreed to administer a teensy dose of steroids that I knew wouldn’t make a difference. Yet weeks later, after my husband died and I reviewed your notes, you’d written that he was suffering from dementia because he didn’t understand his condition!! No, Nurse Hatchet — it was you who didn’t understand his condition because you refused to listen to us. And you did that because my husband had a brain tumor, that he was going to die anyway — indeed, that he didn’t realize and accept it was evidence of dementia — and so why not put him down now?
But Nurse Hatchet — at least I can forgive your shortcomings. You were young and inexperienced and most likely just following all of the crap that they fed you in your Palliative Care program. You hadn’t yet developed a sense of judgment and so you played it by the book. In any event, you didn’t have a clue as to what you were doing anyway — so you couldn’t have helped my husband even if you’d been inclined to do so.
It’s you Dr. Death, who I blame — because you knew better and followed your own wishes in treating my husband instead of our wishes. Let’s take another step back. When my husband continued to refuse to eat and grew weak (something that would happen to any person whether afflicted with brain cancer or not), and his oncologist appointment was still two days away, I brought him to the emergency room and he was eventually sent to a unit where you were assigned to his care. I asked again and again if he could see his neuro-oncologist — something that you could have facilitated since you all worked for Johns Hopkins Medicine — but you didn’t. I asked if you could administer more steroids — I explained that when he was first diagnosed, he’d been on a dose of 16 mg/ — and he could have gone higher. But you wouldn’t do that. I begged you to give my husband cannabis to stimulate his appetite, but you refused to do that either. Instead, during every meeting — and your notes confirm this — you spent your time trying to get me to accept “the reality” of the situation. You ignored everything I told you about the tumor not growing and about my husband’s improvement. You ignored every single one of my requests for treatment. You ignored my pleas to allow him to see his neuro-oncologist who would have seen that something was wrong and ordered an MRI where the minor swelling that would eventually kill my husband could have been caught and addressed at the outset of his admission instead of waiting 10 days to do an MRI.
You, Dr. Palliative Care, were no pal to me. A pal does not impose his judgment on others. A pal does not elevate his own experience and beliefs about terminal illness and dying and quality of life to those actually going through it.
I’m sure Dr. Death that you read about the well-publicized story of Brittany Maynard, the 29-year old diagnosed with brain cancer who moved to Oregon where physician-assisted suicide is legal so that she could take her own life rather than suffer with her illness. You probably thought that Brittany Maynard spoke for all brain tumor patients — and if you did, you were dead wrong. Brittany Maynard’s story hit the news a few months after my husband was diagnosed and I asked him his opinion of her choices. My husband told me that because she was in pain and did not have children, she made a choice that was right for her, but not right for him. He wanted to stay alive as long as he could to visit our older daughter at college, to see our younger daughter graduate. He was not in pain and was enjoying his time at home with family and friends. You stole all of that from him when you refused to give him the care he was entitled to.
If my husband had not been terminally ill, there’s no question that you would have fed him, forcefully if necessary. No doubt that you’d have ordered a battery of tests to get to the bottom of the problem. But because he was terminal — because he was going to die anyway, you figured that just like a dog, it might as well be sooner rather than later.
Dr. Death and Nurse Hatchet — I’m sure you’ve heard the phrase “a good death” in your Palliative Care courses. As you know, a good death is when a person dies on his or her own terms, free from pain and with integrity — and that is what you palliative care folks try to accomplish. But what if a person can’t communicate, or hasn’t had a chance to articulate his vision of a good death? That was true of my husband. Because his tumor was stable, because he was improving, because he had no pain and was enjoying his time — we had never had a chance to discuss, since our Brittany Maynard conversation — what his end game was. I — his wife, the person on this earth who was closest to him for 25 years and knew him almost as well as he knew himself — had to speak for him, and when I did, you ignored me. In doing so, you not only disrespected me, but you disrespected the wishes of the patient who you were supposed to help. And anyway, what in the hell made you think that you were more qualified to make life and death decisions for my husband than me, his wife?
My husband has been gone almost two years. With or without your road blocks, I suspect that would have happened anyway. Then again, maybe not. Two months after my husband died, the FDA approved the Optune Cap. Four months later, surgical techniques emerged that might have allowed for his tumor to be de-bulked. When it comes to terminal illnesses where research is advancing and so little is known, you palliative care doctors don’t know any more about what is going to happen than I do.
But let’s assume, for the sake of argument, that my husband’s life with or without intervention would have been short. Sorry, Dr. Death and Nurse Hatchet — that still doesn’t let you off the hook. You butted in and imposed your narrow views where they weren’t needed or wanted, and in doing so, you took the experience of a good death away from me and my husband. You put me in a situation where I spent the last two weeks of his life fighting for what he wanted, and you made a mockery of our relationship and our marriage by assuming that you knew more about what he wanted than I, his wife of 23 years. And for two years since, you made me put my life on hold as I grappled with anger and second-guessing and shame that I didn’t do enough. How dare you?
After nearly two years of counseling, group support and meds, I’m finally ready to move forward. In that spirit, here’s what I’d like to see. First, the standard of care for treatment of terminal patients by palliative care doctors should be the same as for non-terminal patients. If an otherwise healthy adult suffering from anorexia came into an emergency room, you’d feed her, not starve her out of her misery. The same principle should apply to a terminally ill patient who has otherwise been stable. Second, hospitals should disclose the risks of palliative care treatment and obtain patient consent. I found that once I was even willing to talk to Dr. Death and Nurse Hatchet, it was assumed that I was giving up on my husband, when in reality, I was grasping for any option available. Had I know that Dr. Death and Nurse Hatchet had no intention of trying to help my husband recover and that had been disclosed, I would have affirmatively refused treatment. Finally, even though the trend today is death with dignity and quality of life over quantity, someone needs to be the arbiter of that particularly if the patient temporarily isn’t able to speak on his or her own behalf. If that’s the case, the judgment of the palliative care doctor who has spent a full 15 minutes with a patient should not take precedence over a reasonable spouse who loved her husband and vowed to support him and stand up for him when he wasn’t able to do it himself.