ELISE'S STORY:

We lost my husband’s life to cancer. We lost his death to the medical system. 

 

We moved from New Hampshire to Mississippi in 2005, just days before Hurricane Katrina hit the Gulf Coast. In the winter of 2013-14 my 52-year-old fit, healthy, active husband started to feel distinctly ill. He never smoked, never drank, ate prudently, and was fanatical about drinking plenty of water. But there had been blood in his urine for almost a decade, originally in such small amounts he didn't realize that's what it was, and he now had increasingly disabling abdominal and back pain. He’d been figuring he had kidney stones and now he thought maybe he had an infection-problems a friend of ours had struggled with recently.

In March, I took him to our local walk-in clinic. After a brief trial of antibiotics and muscle relaxants the doctor sent us for abdominal scans. On our way home from the imaging center he called to ask us to come straight to his office. There was no wait, and he greeted us with the words, “I do not have good news for you.” There was a large mass in the bladder; there were five lesions on the liver. He hugged us both. He referred us to a urologist, and as we drove away, I thought, “Rick is going to die.” In that hour our future together had shrunk from two or three decades to – what? A year or two? Months? Weeks? We didn’t know yet.

We had been together for over thirty years; we had a 20-year-old son in college, and a 17-year-old daughter who was spending the spring semester of her junior year in Vermont.

Rick was hospitalized that day. Further scans showed that he was cancerous throughout: there were lesions in his bones from head to foot, a number of lymph nodes were affected, and his lungs were speckled all over with small tumors. The cancer was a small-cell carcinoma; we were told this made him a good candidate for chemo. I asked the specialists what our prognosis was. They were vague. I said we did not want to pursue extreme measures in blind and ill-founded hope. They said it was unusual for a patient to say that, and late at night, one doctor said the oncologists were the ones to watch out for—they were the ones who could never let go.

What happened next happened anyway: Having been told our priorities, Rick’s oncologist he said he believed chemo would make Rick “feel better and live longer.” (A standard line, I later found.) How do two terrified people turn that down? He was the expert. Rick knew he was going to die, but what if he could rally for a while?

Only very slowly did I realize that Rick’s hopes, my hopes, and the doctor’s hopes were not particularly congruent with each other. I think I had hoped that there would be a period of a few weeks in between chemo and the resurgence of the cancer when we could get something like our old life back, even if only to say goodbye to it. A few weeks into treatment, I began to realize Rick seemed to be hoping for more than that—he had set his heart on returning to teaching in the fall. At the same time, I was growing steadily more afraid that even my more modest aspirations were too lofty. We never did know just what the doctor hoped for. We just put our heads down and trudged onwards through the last weeks of Rick’s life, our eyes fixed on the mirages inside our heads.

The oncologist saw us for 15 minutes a few times. He was kind and caring, and prompt to prescribe effective pain medications, anti-nausea medications, and so forth. All the doctors were kind.

No one doctor or nurse ever did a complete hands-on physical exam after the first walk-in clinic visit. They never so much as weighed Rick. The main focus was on lab reports and the chemo plan. Rick developed severe thrush, which no one had reminded us to look out for and which we didn’t spot until we went home after the initial 10-day hospital stay. We added nystatin or fluconazole and probiotics to his medicines; sometimes he had to be dosed every two hours around the clock. A few weeks in, he developed pressure sores. He lost weight with terrifying ease; only by eating palatable protein-rich food about every two hours from 7 am until 10 pm could he maintain his weight at around 143 pounds. The chemo treatments were grueling. Walking to the car exhausted him; sitting in a chair for an hour in a waiting room was painful (he had no fat or muscle to sit on) and wearying. Because of the risk of infection we limited visitors, including children.

One night his temperature started to creep up and—since infection had been presented as The Enemy to guard against—I took him to the ER. We waited there, in plastic bucket seats, for several hours. He was finally admitted at something like 3 in the morning. The antibiotics gave him thrush again, and when we came home a day and a half later, he had lost nearly 11 pounds. I promised him we would never go back to the ER, no matter what symptoms he had.

 

When I called the oncology nurse to ask if we could get home health care instead of being hospitalized if his temperature went back up, she said no. When I said it was exhausting for him to get in the car, let alone wait for hours in the ER, she said, “If he’s that sick, he needs to be in the hospital.” When I pointed to his weight loss and said he attributed it to his hospital stay, she said he needed to fix his attitude.

 

By the time of the last chemo treatment he had to be brought from the car into the treatment center in a wheelchair. His oxygenation was dropping lower and lower; we had no oxygen at home. He had tingling in one hand. One foot dragged when he walked. His head tilted to one side: the lymph nodes in his neck were growing. I felt a spur on a rib. Every vertebra and rib stuck out, and his pelvic girdle was visible across his lower back. His skin was thin. His breathing was ineffectual: his daytime O2 saturation must have been in the 80s for weeks. To climb up the two steps from our carport to the back door, he held onto a vertical pipe and hauled himself up one step at a time, pausing for breath. He was an accomplished and dedicated musician, but could no longer play an instrument with facility or stamina. No one in the hospital assessed his condition in any way other than through lab tests. No one in the hospital seemed to notice or care that they were poisoning a dying man.

 

I asked the doctor and nurses for help decoding which of his symptoms were due to cancer, and which ones were side effects of chemo. With the exception of one call where a nurse listened carefully and said she thought it was the cancer, they gave vague, equivocal replies. I begged repeatedly for clarity on what we might expect. I wrote the oncologist a letter saying that I didn’t have the knowledge and expertise to evaluate what was happening, and asking him to help us plan the rest of Rick’s life wisely. On the phone, I told the nurses that I didn’t think Rick would be well enough to make it to the follow-up appointment after the last scans—the appointment at which the doctor had promised he would evaluate Rick’s condition with us.

 

The appointment was not changed and the doctor did not get back to me.

 

The final scans were done, even though a simple hands-on physical examination would have told the doctors the same story: the cancer was spreading with devouring rapidity. Only the bladder tumor had shrunk. The metastases in the liver, lungs, lymph nodes, and bones were growing and had spread to his initially healthy kidneys, abdominal cavity, pancreas, adrenal glands… I don’t know what he died of in the end: everything.

I learned the scan results over the phone on the Friday before Memorial Day weekend; our appointment with the doctor was for the following Wednesday. Rick had been waiting for that visit, when he trusted “the doc” to tell us what to expect. But his mind was wandering more every day and he was losing the energy to follow a conversation. I knew that in five days, even if we made it to the doctor’s office, he would no longer understand what was said to him.

 

I called the cancer nurse to ask for hospice care; she said they would not authorize it until Rick had been evaluated by a doctor, and as it was now Memorial Day weekend and their office was closed, I should bring him to the ER for that purpose. I refused. We argued. I called the nearby clinic we had gone to first, hoping the original general practice doctor might come to the house. He was not at work, but his on-call partner unhesitatingly authorized hospice for us. Hospice had oxygen delivered to our house, which gave Rick about another day of enough mental clarity to interact affectionately and sometimes lucidly with his family.

Rick was very hard to care for at this point; he insisted on getting up and walking to the bathroom, but he couldn’t walk alone, so two people had to support him. (Our son had come home from college to help.) He was appallingly weak but at the same time scarily strong, so much so that it was very difficult for me to restrain him. But he still routinely said “love ya” to me, teased me occasionally, chuckled a few times, and smiled when I brought him a flower or showed him a tree frog on the window.

 

Twice since Rick’s diagnosis our daughter had traveled from Vermont to spend a few days with us. Now I called her once more and said I thought she had better fly down again, although she was in the middle of final exams and semester closing events. When she arrived Rick said he loved her and was “so glad” to see her. She spent a couple of days with us before flying north again. With no experience of this kind of dying process, we had no idea whether Rick would last for another day or two more weeks.

 

Hospice brought us medication I could squeeze into his mouth--just in time, as he now could no longer swallow his pills. They had a hospital bed delivered, and helped us move him onto it, alongside our own bed so I could still lie next to him. The bed was delivered on the day that had been scheduled for the consultation with the oncologist. That day, Rick stopped recognizing us. Voices and touching seemed to bother him. His eyes were unseeing, his breathing was noisy, and tumors in his neck kept his head tilted way over.

I called the oncologist’s office to say we would not be coming in. The nurse said, in surprise, that she already knew that—he was no longer on the books. I suppose they took him off their list when I said I was going to ask a different doctor to authorize hospice care.

I felt abandoned by an oncologist who didn’t have the guts to help us through the process of dying or the heart to set us free to get that care from someone else.  

Rick died beside me in our bedroom that evening.

We didn’t call the funeral home until the next morning—this was so unprecedented that they originally recorded the date of death as the day we called them. We hung black cloth on our mailbox to let our kind, concerned neighbors know he was gone.

*****

The doctors and nurses seemed to feel that a sick person belonged to them. This cut two ways: he should be in their care, not mine; but they would only claim him for as long as they could pretend he was merely sick, not actually dying. They treated Rick with the possessive intrusiveness considered appropriate for someone with a critical but treatable condition like a heart attack. They treated me as someone outside the need-to-know intimate circle of urgent care. They dropped us as soon as I named what was really happening and asked for help with that. Rick and I were both highly educated people with a lot of skepticism about the medical industry, and we asked the doctors to avoid extreme or unjustifiable measures. Yet they offered chemotherapy to a man ravaged by metastases from head to foot, without detailing what we could hope for, and we acquiesced, without insisting on knowing what we might hope for.

 

The hospital we went to claims to provide palliative care, but when I asked for assistance in grappling not just with cancer, but with death—for anything other than the relief of specific physical symptoms—I consistently met with evasion, stonewalling, or downright denial.

I urge people who have a diagnosis requiring specialized treatment to keep seeing their primary care physician throughout. The clinician whom we first saw practiced hands-on and empathetic care. He was aware, I think, that the things we could realistically hope for might not be things the oncologist could provide. Rick could have benefited from his caring perspective all the way through, and I grieve that he didn’t.

Cancer killed Rick, but his medical treatment further blurred and distorted his last weeks, allowing everyone to postpone facing the fact that he was dying, sickening him and confusing us with a slew of extra symptoms, making us so fearful of infection that he never played with a child again, taking over our weeks with appointments and logistics that distracted us from making peace with reality and may have prevented him from reaching a few last goals, and keeping us tied to a doctor whose specialty was not the one we needed.

As Atul Gawande points out, the damage done by unnecessary care is that it crowds out necessary care. If you’re dying, necessary care is care that acknowledges death. I don’t want to ignore the beneficial aspects. When Rick went into the hospital he was on the brink of slipping into an irreversible hyponatremic coma, due to having restricted his salt intake and drunk lots of water for so long. I’m thankful for the nephrologist who ensured that Rick was not taken suddenly and with no preparation at all. I’m profoundly grateful for effective, generously prescribed pain medication. But so many elements of his care were not only unjustified, but harmful.

And there is a financial postscript. We both taught (and for three more years I continued to teach) at the same small, financially struggling college. Two or three other employees had catastrophic health problems about the time Rick was diagnosed. A month after his death, our insurance company jacked up the institution’s premiums to the point where, with one week’s notice, the college switched carriers. The new insurance company, of course, didn’t count the deductibles and out of pocket expenses incurred under the previous company’s coverage, so every person with ongoing medical issues ended up paying more than twice their usual yearly amount. The new company also had a lot of exclusions. My daughter’s medicine went from $300/year to $1100/year. These expenses afflicted every one of our co-workers. I believe that if Rick’s care had consisted of counseling, pain medication, maybe some radiation for specific tumors, and hospice, our colleagues might have continued to benefit from good insurance.

I’m sorry for the specialists, because I think they didn’t know how to help. I dream of a world where medical school students are taught to sit with how they are likely to feel when they look at someone they know is going to die soon. I dream of a world where doctors aspire to be knowledgeable companions for those traveling into the valley of the shadow of death, as well as for those climbing (for the time being) out of it.

REFLECTIONS:

  • As Elise says: We lost my husband’s life to cancer. We lost his death to the medical system.  She is wise to realize that the problems she encountered weren’t just a matter of a few bad-apple clinicians in the mix; these are systemic problems. Here again we see the fallout of a system designed to combat disease versus care for people. The problems are system-wide, and endemic, and the fix will require legislation and changes in the way care is taught and how care is paid for.  Elise’s stated wish at the end of her essay is reasonable and beautiful and attainable; it will require public pressure on elected officials to go with the individual grit and advocacy Elise demonstrated.  Sharing your story publicly is itself activism. I’m just glad to hear that Elise didn’t personalize the response she got from the clinic and hospital; Elise did everything “right.”

  • This story clearly illustrates how important it is for patients and family to stay engaged with medical care and all treatment decisions. As frustrating as their experience was, staying involved, checking her intuition against all the signals she was receiving from the clinic and hospital, and pushing for action made an enormous difference. She eventually did get hospice into the mix despite significant obstruction; she was able to keep him home; she got the kids to come home while there was still time. In sort, she was able to eke out a comfortable death at home for her husband, all because she trusted her own gut and was clear about what she and Rick wanted and needed.

  • The advice to keep primary care in the picture is spot on.  Specialist care can be important, but the trick is to not lose the forest for the trees.  A good primary care doctor or nurse practitioner can go a long way holding the big picture, and that’s a very precious line of sight that too easily gets lost.

  • If the goal is to live comfortably at home until death comes, hospice is almost always the best choice for care. Data are clear that physicians generally wait too long to refer patients to hospice, so, you may need to be the one to push for hospice to get involved, even if that means overriding a doctor’s opinion.t can be very helpful for you to call the hospice agency and request an “informational interview,” which does not require a doctor's referral or anyone’s approval. They’ll come visit with you at home (or wherever you are) and tell you what they can and cannot provide and how the enrollment process works. If you are not quite ready for hospice enrollment (i.e. you are still actively treating the underlying disease), at least you’ll have a better sense of what’s entailed and where to turn next.

  • Being with the body of someone who just died is a unique moment, and one that doesn’t come around again.  The norm is to immediately call the funeral home and have the body taken away, which may be just right for some families, but for others it constitutes a missed opportunity.  Sitting with the body for a time can help bring closure and concretize the critical fact that the person, as such, is gone now and that the body is actually done.  A coming to terms.  And it also allows for ritual and time to honor the sacred nature of life and death.  If you feel moved by the idea of sitting with the body for a time for more than a few hours, you will want to pack the body in dry ice.  This will help slow the decay process, which otherwise begins immediately, and keep odor at bay.  In this state, family can sit with the body for up to 72 hours or so.  Note:  a recently dead body is safe to be near.  Even f the person died of infection, there’s no risk to you now.  And also note, it is legal for you to delay that call to the funeral home.  

  • “Palliative care,” in practice, means different things to different people and different health systems.  Most hospitals now have some sort of palliative  care program, but how you qualify or get them involved can vary.  What services they provide can range dramatically too.  It’s frustrating but part of the growing pains of the field, and has to do with limiteds numbers of qualified palliative care clinicians and limited budgets for programs.  

        -BJ Miller, MD

Additional Information

Many times you will be the person who makes the choice to elect hospice care, not your doctor. You can always request an informational visit without any commitment to sign up.

When asked to answer four key questions about how well they understood their illness — including whether they grasped that their cancer was incurable and that they had months, not years, to live — only 5 percent answered correctly.

  • BJ Miller

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