History is a great teacher. Whenever I start to believe that our contemporary issues are new to humanity, I seem to immediately encounter a historical example.
I just finished reading a biography of Civil War General and President Ulysses S. Grant. A lifelong cigar smoker and moderate imbiber, he died of head and neck cancer. Memorably, he wrote his autobiography, encouraged by his editor Mark Twain, which is considered perhaps the best presidential example of the genre of all time, while consciously dying from his cancer.
Unbeknownst to me, he also took time out from writing his memoirs to write some personal thoughts into a diary, including about his cancer. The insights into palliative medicine are remarkable, especially given the continuing ignorance of them in our own day. He writes in a remarkably clear-headed way.
Treating the Pain
Describing the pain and symptoms he was having he says, “…I have watched my pains and compared them with those of the past few weeks. I can feel plainly that my system is preparing for dissolution in three ways: one by hemorrhage, one by strangulation, and the third by exhaustion.” This is a stunningly prescient and dispassionately clinical description of his prognosis, and one that I would be delighted to hear from an intern on my service.
Then, for his doctors, he makes crystal clear his care preferences, “I have fallen off in weight and strength very rapidly for the last two weeks. There cannot be a hope of going far beyond this time. All any physician, or any number of them, can do for me now is to make my burden of pain as light as possible.”
A clearer description of the desire for a palliative approach at the end of life couldn’t be made.
He worries openly about his current family doctor insisting on bringing in more specialists, “I dread them…knowing that it means another desperate effort to save me, and more suffering.”
As he weakened, he recorded his reactions to his pain medications. As his doses of morphine escalated, outlines a distinction between addiction versus normal escalating needs for pain relief, “…when I do take [morphine], it is not from craving, but merely from the knowledge of the relief it gives. If I should go without it all night I would become restless…from the continuous pain I would have to endure.” My patients worry all the time about “becoming addicted” to pain medicines – it would serve me well to simply read this passage in reply.
Existential Suffering…and Triumph
One strategy for normalizing end-of-life situations, as difficult as it is to note at times, is to use humor, something Grant does expertly, “The fact I think I am a verb instead of a personal pronoun. A verb is anything that signifies to be, to do or to suffer. I signify all three.”
Yet all was not seen as bleak.
He appreciated all the more the trials and tribulations the country had endured through that horrible war, and he was glad to have seen it through. “It has enabled me to see for myself the happy harmony which has so suddenly sprung up between those engaged but a few short years ago in a deadly conflict.”
And he was appreciative of the sympathy he received from his recently united fellow citizens. “It has been an inestimable blessing to me to hear the kind of expressions towards me in person from all parts of the country; from people of all nationalities, of all religions, and of no religion, of Confederate and National troops alike, of soldiers’ organizations, of mechanical, scientific, religious and all other societies…They have brought joy to my heart, if they have not effected a cure.” Reflecting on one’s life, even when not as eventful as the general’s, is often cathartic for patients.
And he had the occasional “good days” that I urge my patients to embrace, sitting on his porch, “I feel pretty well…I am as bright and well now, for a time at least, as I ever will be.”
Engaging with Loved Ones to the End
Unable to talk, he wrote a loving farewell to he beloved wife, who was wracked with grief. “With…the knowledge I have of your love and affections and the dutiful affections of all our children, I bid you a final farewell until we meet in another, and I trust better, world.” Like many, he had spiritual needs to satisfy at the very end.
Having finished his memoir and sent it off to the printers, he signed off. “There is nothing more I should do now. Therefore, I am not likely to be more ready to go than at this moment.” He had shrunk down to under 100 pounds; too weak to sit, he retired to bed.
Three days later, his family gathered around him, he died.
Twas the night before Christmas, and throughout the facility
Nothing was happening, not even hostility.
All the IVs were stuck in the patients sans care
In hopes that some medicine soon would be there.
The patients were hiding, terrified in their beds,
While visions of discharge danced in their heads.
The student in her scrubs, and I in my white coat,
Had just settled down for a quiet night float.
When from my beeper there arose such a clatter,
I sprang from the call room to see what was the matter.
Over to the phone I flew like a flash,
Called the ED and took off on a dash.
The moon from the bum of the gowned patient aglow
Gave the lustre of diarrhea to the intern below.
When, what to my wondering eyes should appear,
But a giant gloved hand, with a spiny finger.
The deranged, crazy intern, so lively and quick,
I knew in a moment it was Stinky Nick.
More rapid than weasels his questions they came,
As he gestured, and shouted, and called out the names!
“Is it watery? What color? Any blood? went the riff.
Send for ova and parasites, check cell counts and C. Diff!
To the lab! To the ‘scope! And then straight to the floor!
Get going! Get moving! Cut through the OR!”
As med students that before wild surgeons do fly,
When they smack into a crashcart, screaming “Oh, my!”
So up to the floor Stinky Nick flew,
With a gurney of shit, and a patient so blue.
And then, in a twinkling, I heard from the room
The groping and pawing of the Intern of Doom.
As I stuck in my head, and was looking around,
Down from his exam jumped The Nick with a bound.
He was in sterile gear, from his hat to his slippers,
And his scrubs were all covered with black and brown drippers.
A coating of slime had clung fast to his gown,
And he looked like an alien or crazed circus clown.
His eyes-how they flashed! His braces how scary!
His cheeks were pock-marked, his nose a raspberry!
His giant round mouth was glistening with glee,
And the food in his teeth was as gross as could be.
The stool cards he held tight in his teeth,
And the stench it enveloped his head like a wreath.
He had a thin face and a long, thin little nose,
That emitted some snot as he snorted and bellowed!
He was awkward and clumsy, a Tolkeinian ork,
And I gasped when I saw him, a wild-eyed stork!
A blink of his eyes and a wobble of his head,
Left in my stomach a sickening dread.
He gave fifty orders before my mouth worked,
and he filled the containers, then smiled, the jerk.
Wiping a gloved finger under his nose,
And giving a sniff, he ran, as I froze!
He sprang to his computer and started to whistle,
His fingers they flew, like a heat-seeking missile.
And I heard him exclaim as I watched in amazement,
“Happy Christmas Dr. Dale – you’re my favorite resident!”
Heard in my SOCARE geriatric-oncology clinic this week, by an oncologist, “Geriatrics saved his life.” He was being honest and correct.
The patient was an older man with metastatic prostate cancer that was no longer responding to hormone thereapy. Although educated and accomplished, he had become homeless after having his assets stolen by a relative. There was no way to give him his necessary medications under the circumstances.
I pulled some strings to get him directly into a nursing home under my care. He reliably got his medicine, was fed, and received physical therapy. His cancer regressed, he gained weight, and he got stronger. A month later, he looked different enough for my colleague to make the above statement.
Unfortunately, like most hospitals these days, mine has almost no appreciation for what we do in geriatrics, believing things like chemotherapy are more important. While they won’t appreciate this story, I know you all will.
Today, the kids had a visit from the older father of our friends — a lawyer who my wife invited to tell the 3rd graders about legal issues:
My wife picks him up, 3 boys in the backseat. He slowly gets into car, joints a-creakin’.
Amazed silence in the back. Unheard of within 20 feet of this gang.
[Whisper, whisper, whisper...]
Mom, in near panic, as she waits, cringing, for the first question.
Bold 8 y.o., eyes wide — the spokesperson: “Man — how OLD are you?”
Guest, laughing, eyebrows a-twitter, “I’m VERY, VERY old.”
More impressed silence from the back.
“Do you need more details?”
Silent nodding in the back.
“I’ll be 85 next month.”
“Wow — thanks!”
Exhale from Mom.
“Good morning, Domino, what are you doing?”
I had rushed down the stairs to get my 20 minutes in on the treadmill. I hadn’t seen him lounging on the couch. I was perplexed why he was lying with his feet handing off the edge. No response. That’s weird. He’s such a cat-napper. Must be really tired, poor guy. Getting old.
“What’s the matter, Domino?”
Then it struck me – he wasn’t just lying there, half-sleeping. He was completely still.
My insides froze in realization. I immediately reverted “doctor-mode”, moving closer and searching for breathing. Or some kind of movement. Not trusting my eyes and heart, I laid my hand on his chest.
He was gone. Our housemate of 17 years, whom I seen just hours ago as he went bounding down the basement steps, was dead.
I hadn’t seen it coming. I felt ashamed. How come I didn’t realize it was coming?
He was one of those individuals who was so full of life, you just never thought he’d stop. So alive – so infuriatingly alive, in the middle of everything, demanding, persistent, insistent, and loving — he didn’t do anything half-heartedly. Even as he got older and thinner, with a little less sparkle in his eye, he remained adolescent in his ways. Snuggling aggressively. Whining demandingly. Sneeking persistently. Purring excessively.
How could that all be over?
Domino, the cat who would seemingly never die, who had hardly been sick his entire life, was dead. Just like that.
It’s crazy, I thought, I’m a doctor. Not just a doctor, but a geriatrician and palliative medicine specialist. I’m always counseling people about prognosis and end-of-life. I had just been saying how spry Domino was for an “old man”, how he would probably live at least another 5 years. Of course, I had noticed that he was a little thinner, that he was developing cataracts, that he couldn’t jump onto the bed anymore. But he seemed so, well, ALIVE. How had I missed it? What’s wrong with me?
How do I tell Tamra?
Domino was always hers. She had picked him out that day – or rather, he had picked her out. Came right over and introduced himself to her, the smallest of the litter. She brought him back to our grad-student apartment, let him run around, allowed his bright blue eyes full of curiosity to win her over, letting her make the case to me for him to stay. I was against it – we didn’t have time for a cat, we were both too busy, too wrapped up in our own concerns, ambitious young folks making our way to careers in academic medicine and business in the middle of the bustling City. We already had a cat, inherited from a friend, an adult animal that lived with us, tolerated us, but wasn’t part of us.
They both looked up at me, his mischievous blue eyes beside her beseeching brown ones.
I didn’t have a chance. We were now his family.
The thing about pets – they are always there, and they’re always the same. Over all of those 17 years, Domino never changed – he lived the most consistent life. He was always there, a constant source of energy, trouble, and love – through our student-apartment life, our move to our first grown-up house, to another apartment in Steel City with real jobs, to another house in that city, and a final destination in a bigger house, back in Chicago where we started. Thinking through those many years, like a time-lapse film running at super-speed, he’s a remarkable constant. Same personality. Same insistent demands. Same acceptance when demands were met. No worries about anything else. Quick to cuddle and purr, regardless of what happened before.
I’d gotten so used to him. So reassuring to know he was there with Tamra when I couldn’t be. That constancy was assumed. Over time, it was required. Having that constancy gone, out of the blue, is…terribly…upsetting.
I went upstairs, heart flailing, into the usual frenetic pace of another morning with the boys. I walked slowly into the schoolroom. She was there, working with the twins on their lessons, as usual. I didn’t want to scare them.
“Tam.” My voice sounded weird, even to me. They all turned, concern in their eyes.
“What’s the matter?”
“Can I talk with you…privately?” I motioned with my head out in the hall.
Realizing a had less than a minute before the boys would descend, I tried to sound normal.
“Domino died last night.”
“He died last night. He’s lying on the sofa downstairs.”
Like me, she didn’t believe it. “Are you sure?”
Was I? “I’m pretty sure.”
“I want to see him.”
“Should we tell the kids?” she asked. I had wondered the same thing. It was just about time to pack them up and take them to school – how would they respond?
“Yes, of course, it’s what we call a ‘teachable moment’ in the hospital.” Somehow the obvious thing to do, to expose one’s children to all of life’s events, is questioned when we’re struggling with our own feelings of inadequacy.
I gathered our 3 boys together around me, squatting down to look them square in the eye.
“Listen guys, I have something important to tell you.”
“Where is he? Can we see him?”
I took them downstairs, and they wanted to touch him, to experience it for themselves. Smart. Appropriate. Their individual reactions were perfectly in character – amazing how they never break character, I thought.
Harrison (5): (While sucking on his thumb.) “It makes me sad. At least we’ll still be able to play with Grandma’s kitties.”
Xander (8): “What happened?” [I don’t know] “When did it happen?” [Some time last night.] “Why are his eyes open?” [That’s what happens sometimes when people and animals die.] “Is he warm?” [Go ahead and touch him.] Etc, etc, etc. Ever the nervous questioner.
Austin(5): “Can we get a dog?”
I noticed my wife didn’t want to touch him. Later, she confessed to me that he always purred when she touched him, that he wouldn’t, and she knew she would bawl if she touched him.
I’m glad we had the boys experience this. The author E.B. White, of Charlotte’s Web and Strunk & White’s Elements of Style, once said that one should always treat children with respect by talking about adult things in terms they can understand. As usual, Mr. White was correct.
I will try to keep this in mind when considering end-of-life discussions with families. If they ask, always let the kids participate. They often bring an honesty and openness that adults lack.
I spent the rest of the day feeling remarkably melancholy, unable to shake my feelings of sadness, loss, and guilt. A little over a year ago, my father passed away, a victim of cancer (http://chicago.academia.edu/WilliamDale/Papers/855803/My_Fathers_Life_and_Death_from_Cancer ); in certain respects, my emotions are more disheveled over Domino. Because I care for cancer patients regularly, I knew well before my family that my father would die from his cancer, and I had prepared for it. I was completely shocked to find my cat had died. Although I thought about my father a lot, we had become estranged over time, and we didn’t talk regularly, so his death did not change my daily life and routines signficantly. Domino, in contrast, was a constant presence our lives, especially my wife’s life. It’s impossible right now to walk through the house and not be constantly reminded of him. And, unlike my father, who could be temperamental and unpredictable, the cat was consistently contented and friendly, a soothing presence always. The combination of his constant, supportive nature and his unexpected sudden departure, is making these feelings very difficult to shake.
I really want to be a more consistent source of support to my friends, family, and colleagues. A steadying influence can be instrumental in helping people make it through the day. And when working with families as their doctor, I need to keep in mind just how difficult a death, especially an unexpected death will be, how much of a “hole in the universe” the loss of a loved one will create, and how empty one will feel.
We reflected on Domno’s life tonight. It was a great life – better than most of us get. He was happy, vibrant, and engaged right up until the very end. He was able to live life on his own terms. And he died at home, not in any pain, around loved ones, in his sleep. I will do better to emulate these characteristics, and hope my own earthly departure will be as short, simple and easy. And I will work harder to help my patients have the same sort of “healthy death.”
“How are you doing?”
“I’m so sad. I’m really going to miss him.”
“They told me I had to get the information myself,” she said.
“What? Why?” I responded, annoyed.
“They said it wasn’t in their computer, and that I’d have to get it myself. They said since you’re a doctor here, you could easily check the computer yourself and get it from medical records,” my wife continued.
“That’s crazy! I’m not allowed to look at the computer records; I could lose my job! And it’s much easier for them to get the paper records than me! ” I was incensed.
“What do you mean? Can’t you just go pick it up from medical records? The nurse said it would be easy,” she continued. “Why are you so upset?”
A Learning Opportunity
I felt myself being sucked into a Kafka-esque bureaucratic nightmare, medical-style. Unfortunately, my premonitions were on the mark – I was going to invest a lot of time, spend some money, and endure significant aggravation in getting the medical records on my son that they had failed to get. The worst part was THIS WAS MY OWN HOSPITAL where I had worked for the past 8 years, the last 3 as a section chief. I never ask for special treatment, and I was not going to get any special treatment — which meant I was going wrestle with The System like anyone else.
It’s often said that the problems with medical errors are “system issues” not “people issues”. I would suggest they are both. A good system, with irresponsible people, doesn’t work. And good people in a bad system preventing their best effort drives out competence. I’ll keep track of both.
I tried to approach this as a learning opportunity. As some smart person once said, “’Experience’ is what you get when you don’t get what you want.”
Getting Experience (Instead of what you really want…)
Our twins attend the ChicagoVirtualCharterSchool( http://www.k12.com/cvcs/ ), which is part of the Chicago Public School System. They require proof of vaccinations. Getting such proof would seem trivial given that our twins were born in the hospital where I work, our pediatrician is in that hospital, and we have an electronic medical record (EMR). It was far from trivial.
After checking the electronic medical record for vaccination proof, the nurse tells my wife that although everything else is there, including for the other twin, there is one vaccination – the first one — for tuberculosis (TB) that’s missing.
This would be a system issue(#1). Somehow, the information about the vaccination, which was very likely done for both twins, wasn’t entered in the computer. Seems like the right solution is for the doctor’s office to check to medical record, right? Afterall, they have access and permission to do so – AND I DON’T. Let me clarify this point. I don’t actually have permission to access my family’s medical records, even though I have access to the EMR. In fact, I CAN BE DISMISSED FROM MY JOB FOR LOOKING AT THE MEDICAL RECORDS FOR MY FAMILY, INCLUDING MY OWN. Absolutely, no doubt, on the books, not to be ignored, rule. No exceptions.
Down the Rabbit Hole
The nurse said, “You have to go check the medical record yourself. It should be easy since your husband is a physician and can look it up in the computer himself. Or you can fill out a form to get the records.” Basically, the nurse was telling my wife to have me do something illegal by looking in the computer. Plus, we were just told they didn’t find it in the records; as a geriatrician, it was unlikely I would have more luck finding the pediatric vaccination records. Further, there was no need for me to fill out any “permission” forms – this wasn’t an “outside hospital”, it was my own institution! The doctor just needed to request the records be retrieved. Of course, my wife has no idea this is true, since it seems reasonable enough to ask me to look it up.
So the nurse either: 1) doesn’t know the rules or 2) she does know and doesn’t want to put in the effort to get the medical record. I suspect both. One reason she wouldn’t want to do this – it’s a terrible pain to get anything from medical records, and she didn’t want to do that. Why it’s going to be any less painful for my wife is unclear. This is a “person issue” (#1) – someone not interested in patient satisfaction.
I explained this to my wife – I certainly wasn’t allowed to check the computer myself; I could be fired for doing so; the doctor’s office has free access to the medical record; we would have to request the paper record and probably pay for it. The nurse chose to defer that responsibility from the doctor to us. That was the path of least resistance.
And we were under a time constraint. Our son would be kicked out of school without his vaccination record, as the regular phone calls made clear. As we soon discovered, medical records will only promise to make the medical record available in 14 days – after the school’s deadline. The alternative was to have him get another vaccination, a major inconvenience for us, in multiple time and money-wasting ways, and painful and mildly risky for him. Given that none of this was really due to anything we had done, that it would likely be completely superfluous, and it might interfere with his education (a bit), the indifference shown was impressive.
First, we tried calling the doctor’s office to get the records themselves. A pleasant woman put my wife on hold for 10 minutes, discussed the situation briefly, and promised to call back with a solution “right away”. She did call back — many hours later, on a cell phone and in her car. We were unable to decipher her message in the garble, except for a vague promise to call back. She never did.
This would seem to be a “person issue” (#2) for sheer indifference. It was the job of the person who called us to resolve and situation and return out call. She didn’t do that. Perhaps she doesn’t have the resources. But, since I have my own clinic, I would never do this, so my sympathy for her constraints is limited.
Next, we started working with medical records directly. Keeping in mind that I’m a physician who has worked in the system for many years, I have little idea how patients would deal with this issue. I contacted medical records, and I was told the timeline, that there was a form to complete and a fee to pay. Form was filled out and faxed back, followed up with a phone call to confirm its arrival. Promise made to call when it was available. The deadline we had from the school was given, although that did not even get a “we’ll try” comment.
One especially annoying comment on the form says, in essence, that you will be charged about $75 for the records and that the fee is waived for your physician. That really infuriated my wife, having received official confirmed that this was a service provided to our doctor but deferred to us. This is a “system issue” (#2) — a reversal of promoting patient satisfaction by pointing out that you are unnecessarily paying for a service.
As the deadline for school approached, I started calling medical records daily to check on the records. What was especially frustrating was the knowledge that the records were in the hospital basement, almost directly down the elevator from my office, but nobody would help copy them any sooner than the deadline. Fortunately, we were able to get a delay on the school deadline for a week. Medical records called, reiterated the fact that we had to pay for the records, and said I could come anytime to “pick them up”. This is a system issue, no flexibility for extenuating circumstance, (#3) and a person issue(#3) for unwillingness to make an effort.
A Trip to Medical Records
I pessimistically decided I would need a least half an hour in medical records, so I took my only available time, my lunch hour, to make the trip. I carefully brought a check with the exact amount on it. Again, I felt sorry for patients and their families, who assume that “pick them up” means they are going to be ready and come on a tight schedule (and are paying for parking by the hour or are tied to a bus/train schedule). After a long walk through poorly marked grey concrete corridors, I finally found the medical records office in the basement of the hospital. I was startled to be hit with a stiff breeze from a large fan as I entered, given it was December in Chicago. The person sitting up front, who seemed surprised to see me, motioned me to a different person in the back of the room to help.
That person asked, “Who are you?” (no “hello” or “how can I help”) – thankfully I had brought my hospital ID – and then, “Do you have your check?”. She pointed out that, since I didn’t need to have the records mailed, the $5 “mailing fee” was waived. Since I had already written in the amount I was told, I offered to donate the extra funds. She seemed surprised and annoyed. Told me to “take a seat” on the plastic chairs in the office, with no indication of how much longer it was going to take or what needed to be done. Again, wondering why more time was needed, since the records were presumably ready for “pick up” when they called, I sat down and observed the rest of the process.
My pessimistic guess was right on — it took about 30 more minutes for the records to be produced. I honestly have no idea what was happening during these 30 minutes. Nobody ever told me anything. At some point, the person “helping me”, simply got up and left the area without explanation – I actually wondered if she had simply gone to lunch, but decided not to ask. Several people came and went, picking things up, and going about their business. I was about to ask if should come back later (I had a lot to do), when the woman finally walked up, handed me an envelope full of papers, and walked away without comment or explanation. I opened the envelope to check that the papers looked like what I wanted.
As a left, I turned the wrong way walking about the office in the ubiquitous grey concrete hallways – one of the people from the office smiled and laughed as they pointed the right direction out to me. It was one of the few comments anyone offered. Person issue for simple pettiness. (#4)
One thing about medical records: they are full of useless information. I went through the surprisingly large number of papers and found the vaccination record. It was a little difficult to decipher, but I found where, indeed, the vaccination was given. Thankfully, my son wouldn’t need an extra trip to the doctor’s office for a shot, reminding me of yet another “system issue” (#4) – from the doctor’s office perspective, it would have been best if he did need another shot, since they could bill for the visit and we had good insurance. All of this unnecessary time, money, and effort was a consequence of someone’s failure to enter this relevant information in the computer record to begin with.
Lessons learned – Systems and People
1. There are definitely “systems issues” regarding medical information. Those working in the system need better incentives to provide good care. The system needs greater redundancy to avoid this waste of time and energy. The system also needs a better way to deal with problems than kicking it out to the patient and his/her family. Financial incentives should reward responsiveness to patients, not reward deferring responsibility back to patients. Those providing the “service” need some sense that their contribution matters.
2. There are definitely “person issues” regarding medical information. Those working in the system need to be nicer and more helpful. The degree of indifference, bordering on antagonism, is breathtaking. All the medical providers, physicians included, should take greater responsibility for those who work for them. The nurse’s erroneous recommendation – that if followed would put my job at jeopardy – was unconscionable. At least as problematic, the physician never participated in the process. We never heard from our pediatrician, who I suspect has no idea what happened.