MY DARLING BILL IS DEAD

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i.

He died at the University Medical Center of Princeton on May 6, 2016.

ii.

It was sudden, and not sudden. Although this blog has candidly addressed my thoughts and feelings as I enter late life, there have been significant and purposeful omissions. The biggest is that from its inception two and a half years ago, Bill and I both knew he had a fatal disease for which there was no hope of cure.

For a long time it was a theoretical knowledge, obscuring our horizon but not imposing much practical restriction on daily life.  Back in 2005, when we had been together only four years and still lived in Massachusetts, he felt unwell and checked himself into the ER of Mass. General.  It turned out he had been overdosing with vitamin D, which is unwise (as he should have known, being an M.D. himself).  In the course of the complete workup that hospitals are wont to do when addressing a systemic complaint, a perceived crackle in the lungs led to a scan, which led to a hospital pulmonologist showing up at his bedside to announce bluntly that, by the way, he had idiopathic pulmonary fibrosis and the average life expectancy for that disease was three years.

“Idiopathic” meant, in his case, no known cause.  Fibrotic scarring of the delicate lung tissue can be generated by continued exposure to and/or inhalation of strong irritants, after which it continues even where there is no further exposure. Bill had never worked in an environment polluted with noxious substances, never smoked, never lived in a heavily trafficked inner city.  He was a psychiatrist who sat in a chair in a comfortable and well ventilated suburban office for most of his working life and listened to unhappy people talk about their problems. “Why him?” is another of life’s unanswerable questions.

Moreover, the diagnosis was inadvertent.  If he had not gone to the hospital because of the excess Vitamin D, the fibrosis would not have been discovered until one or both of the two symptoms of this hopeless disease manifested themselves: continued coughing and/or shortness of breath.  Bill was symptom-free in 2005 and remained so for eight more years. That said, it’s not a diagnosis one can forget. He took a copy of the scan with us when we moved to Princeton and began a rigorous program of what he hoped would be proactive “alternative” treatment for lung issues.

These I will not describe, other than to remark that for the rest of our time together half our freezer and refrigerator were given over to expensive, time-dated and time-consuming antioxidant substances to inhale or swallow, and that one of our two linen closets contained enough supplements to open a store, plus boxes of bottled remedies to ward off any incipient cold that might develop from a sneeze or a sore throat, because even a cold could turn into a bronchitis or a pneumonia that his compromised lungs might not be able to handle.

iii.

The threat of death by suffocation was not all Bill confronted by the time he was 83 or 84. But although several of his other medical conditions were extremely painful, they were not fatal, and all but one tended to be cyclical, so there were periods of relief.  He was brave, patient, not particularly complaining, and appreciative of everything he felt life still had to offer.  However, these other ailments distracted me, so that I didn’t note with precision when the coughing began.  Looking back without notes, I place it in the fall of 2013 — two and a half years ago, which was when I began to blog.  (I don’t think there was a connection, but I must say that although he was never a demanding man, when doing all the chores around the house and tending to him began to consume much of my time, the blog was a great help to me; it could be written at home but also connected me to the world outside.)

The coughing was awful, and incessant, and utterly exhausting.  It sounded like a large dog barking non-stop.  If I had gone out to market or the drugstore, I could hear it coming from the front bedroom or living-room when I pulled into the driveway.  One or two of the neighbors inquired.  Not wanting to explain about the fibrosis, he said he was having a bad bronchitis.  Perhaps he thought that was true.  Somewhere he had picked up the idea that if the coughing was productive, as his was (meaning it produced phlegm), it was not a fibrosis symptom.  If so, he had been misinformed.  Even if productive, that kind of coughing is a sign of fibrosis.  In any event, he found a medication, Gabapentin, which suppressed the cough (although not the cause) and another year went by.  He could still climb the stairs in the condo without getting out of breath, and if he seemed to tire on short walks more quickly than before, that could be attributed to age. The last time we strolled the paths in Marquand Park together, in May 2014 (a visit memorialized in this blog with many photos of the trees he loved), he needed to rest on a bench halfway along.

iv.

At the end of 2014, the stairs became more difficult for him and we began the search for a pulmonologist to work with.  We did not revisit a second time the full-of-himself head honcho at Columbia Presbyterian in New York who had replied to Bill’s initial question, “How long do I have?” with a shrug and the curt, “Pick a number.”

In Princeton, the kindly fellow who ran the pulmonary rehabilitation lab at the University Medical Center where Bill would die a year and a half later told him he was off the bell curve for death from pulmonary fibrosis because he was still alive nine and a half years after diagnosis. That was cheering but also wrong. As we were told by the third pulmonologist, who took over when the kindly fellow retired, the clock begins to run from manifestation of symptoms, which is usually when the disease is diagnosed, and not from the time of an inadvertent diagnosis made when there were not yet symptoms.

Oxygen entered our house.  Medicare paid for a large concentrator with a fifty-foot cannula attached. (Easy to trip over.)  It stood at the foot of the stairs, so the cannula would reach Bill’s side of the bed in the master bedroom.  He didn’t need it for a while. He did need the seven-pound portable rechargeable oxygen concentrator that could be carried, with effort, in a shoulder bag or a backpack whenever he left the house or did anything requiring exertion. It had to be recharged every two hours or so, which meant we couldn’t stay out very long.  By now, I was doing all the driving anyway.

There was also Esbriet, an obscenely costly prescription medication the FDA had just approved; in Europe it had been shown to delay the development of the fibrosis somewhat if taken at maximum dose.  Bill was never able to achieve the maximum dose.  Even a two-thirds dose closed his esophagus so he couldn’t swallow, made him round-the-clock nauseous, and removed all his appetite, so that he lost significant weight — for him, always trim-to-slender, not a good thing. The third pulmonologist thought his problems with it might be age-related; younger patients seemed to tolerate it better. He recommended stopping it entirely or else trying an alternative and equally costly new drug, Ofev, that similarly slowed fibrosis development but had a different, although equally undesirable, side effect: constant and urgent diarrhea. Bill rejected the alternative without trial.

v.

At the beginning of 2016, a fourth pulmonologist arrived at the University Medical Center. She seemed empathetic and had a father with emphysema and his own oxygen concentrator at the foot of the stairs.  That may not have been the best of reasons to switch, but Bill wanted to feel comfortable with his doctor, which was probably as important as anything at this point. She put him on oxygen 24/7, which meant he began using the fifty-foot cannula day and night. Essentially, he was trapped in the house. It also rubbed sores on the tops of his ears. We had to put moleskin rectangles there.

The pulmonologist at Mass. General who had said the average life expectancy was three years did not offer detailed statistics.  50% of pulmonary fibrosis patients live five years from onset of symptoms; the other 50% don’t.  Since the coughing had not begun till the fall of 2013, I calculated that with some luck we might have another two or two and a half years together. Bill, tethered to his tubular lifeline, wanted to believe me but I think now probably realized it was not likely to happen.  He read books about the meaning of life, listened to Baroque music, watched nature videos, and slept more. We also held hands much of the time, even as we fell asleep.  I felt he was drifting into some space in his mind where I couldn’t follow, seeking to make peace with death.  Someone commented on this blog that the few and sporadic pieces I managed to post in 2016  were very dark.  Of course they were: It was just too hard to be lighthearted, even in a virtual world that wasn’t our real one.

vi.

Bill turned 88 on January 27.  After he died, I found in the recent Google history of his iPad the question, “What percent of people live to 88?”  Was he trying to comfort himself?  April 13 was our fifteenth anniversary but it was raining, so we postponed celebration.  A few days later, he made the effort to shower, shave and dress nicely; we went out to dinner at a local Italian restaurant. (He loved pasta to the end.)  I let him out at the door with his portable oxygen, parked, and walked back to join him.  Although neither of us knew it, it would be our last outing together.

Near the end of April, I came down with the worst flu I had had in forty years (despite our both having had the recommended flu and pneumonia shots the prior fall).  For four days, I could hardly get up in the morning.   Of course, he caught it from me.  Just as I was beginning to recover, he sank fast. He fell out of bed the following afternoon, so weak I couldn’t help him off the floor.  I had to call a neighbor and her teenage son; the three of us managed to hoist him onto the mattress. That night it happened again, at one in the morning.  This time I called the police. They sent an ambulance and the EMTs, as well as a young police officer.  The head EMT wanted to take him to the hospital, but Bill refused and signed a paper to that effect.  However, the following day, his fourth pulmonologist insisted I bring him in.  He had to rest several times between the door and the car. When we reached the hospital, I brought a wheelchair out and helped him and his portable oxygen into it, parked, and came back for him.  I had never pushed him in a wheelchair before and was picturing in my mind that I might be doing that from now on.  I still thought there would be a “now on.”

vii.

He arrived on a Friday. He died the following Friday.  A nasal swab indicated that what we both had had was a viral flu, which in his case had turned into viral pneumonia with a probable overlay of bacterial pneumonia.  For three days, while he remained relatively upbeat, they pumped him full of steroids, antibiotics, anti-viral medication and much more oxygen than the home concentrator could generate, but were unable to reverse the infection in his lungs. They then suggested a bi-pap mask, which would prevent him from eating.  They also explained that they couldn’t leave him on it long,  and the next step would be intubation (breathing on a respirator) followed, if that didn’t work, by a tracheotomy.  Bill adamantly rejected the idea of tracheotomy; he refused to live connected to tubes and machines.

At first he decided against intubation as well, knowing that if it didn’t assist him in beginning to breathe on his own, he would never come off it, meaning when they removed the tubes, he would die.  But then on Tuesday, he changed his mind. One of the hospital pulmonologists was encouraging intubation because with the extra time it could provide, the medication might eliminate the infection and he would have another two or three months of life. Eventually, he agreed.  “Let’s give it a shot,” he said.

viii.

I spent Tuesday night at the hospital.  We both knew it might be our last night together, because intubation involves so much morphine that he would be unconscious from then on.  But we had time to tell each other most of what we wanted to say.  When I couldn’t quite understand him through the bi-pap mask, he wrote in a little notebook I still have in my bag. I did most of the crying. He said he wasn’t afraid to die anymore, that slipping away under morphine was not a bad way to go, and that he was only sorry he was leaving me.  He also said many other things I shall treasure all my life, but they are not to share.

By Friday morning, it was clear that intubation was an exercise in futility; it was not helping him breathe on his own. The doctors asked if I wanted to continue. I called Bill’s son in California, with whom I had been in daily contact. He agreed we should let him go. I had asked the attending that day how long Bill might live when removed from the respirator.  He said a few hours, or even a day. They removed the tubes at 2:35 in the afternoon.  He was pronounced dead at 2:52.  I sat by his side, and held his hand, and watched the blood drain from his face.  Although the hand remained warm for a while, his face turned yellow.  Whatever was lying in the bed wasn’t Bill any more.  Bill was gone.

HOW WE DIE

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Dr. Sherwin B. Nuland died on Monday, March 3, 2014, at his home in Hamden, Connecticut.  He was 83.  The cause of his death was prostate cancer.

I had never heard of Dr. Nuland until news of his death was reported in the main section of The New York Times.  I don’t as a rule make a practice of reading obituaries, so I might never have learned about this man if he had not been important enough in his field for the Times editors to take him out of the obituary section and place him in the news.  They did it because after he had retired as a surgeon at Yale-New Haven Hospital and as clinical professor of surgery at Yale University, where he also taught bioethics and medical history — he wrote a celebrated book.  It is called How We Die.

How We Die won the National Book Award for nonfiction in 1994 and was a finalist for the Pulitzer Prize in nonfiction in 1995.  It has sold 500,000 copies worldwide, and continues to sell.  At a time when the goal of medicine is to prolong life as long as possible by means of aggressive treatments that usually intensify and prolong the suffering of patients while depriving them of an easier death, Dr. Nuland’s goal was to demythologize death, to make it less frightening, and to encourage the dying to make decisions regarding their care with more reasonable expectations.

In July I will be 83. Having nearly arrived at that age, this description of the book was necessarily of interest to me — of sufficient interest that I pulled my ostrich head from the sand long enough order it from Amazon.  Not having yet received it and read it, or read as much of it as I can bear, I now fall back on the obituary itself to tell you more of what’s in it.  [It appeared in print on March 5, 2014 on page A20 of the New York edition of the Times.]

To Dr. Nuland, death was messy and frequently humiliating, and he believed that seeking the good death was pointless and an exercise in self-deception.  He maintained that only an uncommon few, through a lucky confluence of circumstances, reached life’s end before the destructiveness of dying eroded their humanity.

‘I have not seen much dignity in the process by which we die,’ he wrote. ‘The quest to achieve true dignity fails when our bodies fail.’  [Italics added.]

In ‘How We Die,’ published in 1994, Dr. Nuland described in frank detail the processes by which life succumbs to violence, disease or old age.  Arriving amid an intense moral and legal debate over physician-assisted suicide — perhaps the ultimate manifestation of the concept of a dignified death — the book tapped into a deep national desire to understand the nature of dying, which, as Dr. Nuland observed, increasingly took place behind the walls of the modern hospital….. The issue [of physician-assisted suicide] has only intensified since the book was published, and has been discussed and debated in the medical world, on campuses, in the news media and among politicians and government officials engaged in health care policy.

‘The final disease that nature inflicts on us will determine the atmosphere in which we take our leave of life,” he wrote, “but our own choices should be allowed, insofar as possible, to be the decisive factor in the manner of our going.’

Beyond its descriptions of ruptured embolisms, spreading metastases and bodily functions run amok, ‘How We Die’ was a criticism of a medical profession that saw death as an enemy to be engaged, frequently beyond the point of futility.

In chiding physicians, Dr. Nuland pointed the finger at himself, confessing that on more than one occasion he persuaded dying patients to accept aggressive treatments….One of those patients was his brother, Harvey, an accountant who died of colon cancer in 1990 after receiving an experimental treatment with no reasonable chance of success.

Looking back on that episode, Dr. Nuland wrote that he had mistakenly tried to give his brother hope, failing to acknowledge that disease, not death, was the true nemesis. [Italics added.]

…. In its concluding chapter, Dr. Nuland confessed that he, like many of his readers, desired a death without suffering ‘surrounded by the people and the things I love,’  though he hastened to add that his odds were slim.  This brought him to a final question.

‘And so, if the classic image of dying with dignity must be modified or even discarded,’ he wrote, ‘what is to be salvaged of our hope for the final memories we leave to those who love us?  The dignity we seek in dying must be found in the dignity with which we have lived our lives.’

Dr. Nuland’s death was reported by his daughter, Amelia Nuland. She added that he himself had said he was not ready for his own death. “He told me,” she said, ” ‘I’m not scared of dying, but I’ve built such a beautiful life, and I’m not ready to leave it.’ ”

If you want to know more of what’s in Dr. Nuland’s book without buying it yourself, let me know, so I can revisit this painful (but ultimately unavoidable) subject another time — after I’ve read it, or at least some of it.

Getting old isn’t always a blog-ful of laughs.