Tribute To A Patient
For a doctor, every patient death is unpleasant. My first thought when it happens to me is always, “What mistakes did I make?” I go back through the sequence of events that led up to my patient’s death and ask myself if, given what I knew at each point along the way, I should have thought differently, acted differently or more quickly, or called for help sooner. Only once I finish this exercise and I’ve thoroughly assured myself my patient didn’t die, or even die sooner than he or should would have, because of me can I then move on to grieve for the person that was lost.
I’ve had the privilege to care for a number of people I’ve found remarkable for a number of different reasons: some because of their intelligence, some because of their accomplishments (my practice has included a few Nobel Prize winners), and some because of their buoyant personalities. But in the last little while I lost a patient who was special for an entirely different reason than any of those, a patient who upon reflection I’ve concluded wasn’t just one of my favorites but in fact one of the most quietly remarkable people I’ve ever known.
Her name, her daughter has given me permission to reveal, was Joan (to this day I’m not sure if I ever pronounced her last name correctly—though if I’d said that to her I’m sure she would only have laughed and said I always did it fine, whether I did or not). She had a long list of challenging medical problems that included chronic renal failure, congestive heart failure, diabetes, and a chronic cough I could sometimes control but was never able to resolve.
The cough bothered her the most, I think, though she’d mostly only mention it when I specifically asked about it, knowing I was doing my best to treat it and had little else to offer after the initial work up—and knowing, too, I kept trying to think of new ideas to control it anyway. When she did reply that it was worse, she’d often dismiss it as “just her cough,” as if embarrassed to draw attention to my inability to make it go away. “I’m dealing with it,” she’d often tell me with a smile.
She hated complaining (at least, to me—I don’t know if she treated her daughter, who came with her to see me as often as her schedule would allow, the same way). She’d answer my questions about the details surrounding her troubles honestly, though, and always accept with a particular grace whatever answer I had for her, whether it was, “I have just the thing,” or “There’s not much I can do about that.”
At the end of our visits, she’d always ask me how I was. And she’d want details. When I got married, she’d ask about my wife (this after buying us a wedding gift and subsequently yearly anniversary gifts as well). And when I had my son, she’d ask about him. Especially about him.
Every Christmas she baked me a red Santa Claus cake and bought me a jumbo-sized container of salt-free cashews, upon which my wife and I would feast for days until we were both sick. I think she gave me those gifts 11 out of the 12 years I cared for her.
No matter how often the medical system in which I worked failed her—a lost lab slip, a longer wait than necessary or appropriate, a problem with a prescription—she never had a negative word to say about anyone. She always assumed people were working hard to do a good job and always expressed appreciation for it. She never demurred from acknowledging when someone had made a mistake but always did so in a forgiving way, in a way that implied she believed next time things would go better. She saw the good in others because that’s what she looked for, only occasionally displaying uncharacteristic disappointment when she could find no other explanation for someone’s bad behavior besides a lack of caring.
For lack of caring was the one thing for which she seemed to have little tolerance. The subject didn’t come up often, but every once in a while we’d discuss current events, and when the story was about someone’s poor treatment of someone else, she would usually just shake her head and murmur, “I just don’t understand it” as if, though wizened by 78 years of living on this planet, she truly didn’t.
Of course, I only knew her as a patient, so the full dimension of her life and character remained unknown to me. Like all human beings I’m sure she had her bad days when she was grumpy, but I never saw them. She was one of the few people who consistently made me feel good every time I talked with her, even though our conversations were mostly about her complaints (I always had the feeling I was the only person to whom she confessed them. “I don’t want to be a bother,” she would always say just before reluctantly admitting something was bothering her). She just had a grateful way about her that always stood out, a way that made me think about how we all role model behavior for one another all the time. And how truly rare consistent compassion is. Sometimes, after failing to treat a patient as kindly as I should have, I’ve been surprised to find a mental picture of Joan popping into my head, her image reminding me gently that I could have done better, that I had no real excuse for treating anyone differently than the way I did her.
Joan was a gentle woman of no outstanding accomplishment or contribution of which I was aware who nevertheless, I’m reasonably confident, made everyone with whom she came in contact feel cared about. Everyone’s death leaves a hole in the lives of more people than they would have known, and frankly I’m a little surprised by the size of the hole Joan’s death left in mine. But I’m glad I knew her. And I sure do wish she was still around.
Next week: How To Communicate With Your Life
Thanks for this post Alex.
I’m really sorry you lost a friend.
Julia
A beautiful tribute to a life fully lived.
I knew a lady like that once. Life for her was really hard and she lost all of her sons and her husband before she died. She had very little in the way of “earthly belongings” but whatever she did have she would gladly share with you. She managed somehow to save up some money from time to time but I don’t know how. She was like a grandma to me. I always felt safe when I was with her. I miss her too, all these years later.
This is a wonderful tribute. Thank you so much.
How lovely that you have shared her story in this way! My beliefs are such that I imagine that she knows somehow, and that she is pleased to be of inspiration, as she no doubt was to many more, here on Earth.
L
Alex,
This one made me cry.
Alex,
I am sorry for your loss. And the positive side to this story. Thanks to Joan’s gift of a jumbo sized container of cashews. I had a good giggle. You see for me 1 is too many and a 1,000 is never enough. Those cashews would not have lasted more than a day in my house. Thanks Joan. You made me smile.
Tony LaPorta
Many people never know how they have touched other’s lives. It may be such a small gesture, like the cashews, but that grace makes us feel ennobled, too.
I now try to always let such people know they have made a difference in mine.
Kinded spirits in consistent compassion and gratitude; it is no wonder that you acknowledge Joan.
Chris
(Several Nobel prize winners…). How prideful that sounds.
“Joan (to this day I’m not sure if I ever pronounced her last name correctly..).” Really? A simple and respectful thing like learning how to pronounce this woman’s name? The patient you cared for so much?
How sad.
Joan’s trust in the innate goodness of others touched me.
Thank you for writing about her.
Judi, I have lived abroad now for over a decade, and if there is one thing that I’ve learned, then, it is that no matter how people try, they cannot pronounce my name correctly. It’s not about respect, it’s about different languages making different sounds in different places. Of course people could potentially learn, but why should I use a valuable portion of my time together with them correcting their pronunciation? What is there to gain for either of us?
As for the comment about the Nobel prize winners sounding prideful, then, I agree with you there. It does sound prideful. Whether it was meant pridefully, however, is something only Alex can know. But even if it was, then so what? Must our teachers be flawless before we can hear their words? Are we not all just works in progress? Would life be interesting if we weren’t?
———
Alex—my heart rejoices with you that you got to know such a wonderful person.
/A
Sounds like you’ve been blessed.
“She always assumed people were working hard to do a good job…she saw the good in others because that’s what she looked for….” I appreciate this very much. I think it’s easy to view others through a lens of negativity and to assume the worst. It’s a bad habit arising, I think, out of a need to protect oneself. I’m inspired by people like your patient because they remind me that I have more positive options. I love that something so simple as assuming the best in others can have such a profound effect on one’s experience of living—just thinking about it makes me feel much lighter.
Thanks, again, for another lovely post. I love these discussions—they have become invaluably enriching to me. 🙂
It’s stories about wonderful people like that which make me look forward to becoming a doc. My condolences on your loss.
Alex,
Your purpose in mentioning the Nobel prize winners you’ve treated was immediately clear to me; I never saw it as a prideful statement. And as to the pronunciation of Joan’s name, I think it’s very important to use the name people prefer and to pronounce it as carefully as possible. I saw the joke and appreciated it.
Gene
Dear Alex,
I train and supervise volunteers to be compassionate companions to people at the end of their lives. When the volunteers come to support groups after a death they share the incredible stories of the lives of the people—simple and extraordinary. I see the volunteers as the “keepers of memories” of these souls, and after hearing the stories, all the the room share this role. The clients live on through this story telling. You have done the same with us today. It is a great tribute to Joan.
Judith Kahn
Doula To Accompany and Comfort
http://www.shiraruskay.org/doula.html
I think one of the reasons Joan was so pleasant was because she was truly grateful for the genuine, compassionate care she received from you.
Deanna
Alex,
Thank you for sharing this & to Joan’s daughter for allowing you to honor her. For this should happen to all of those in the medical field during this time of political/economic chaos, to remind all of them why they got into the field to start with.
This particular post touches my heart and reminds me of those days on the street as a paramedic and getting to know those routine patients; never knowing how much they touch your life until after they are gone. Now that I have gone on to another profession, their memory still warms my soul.
I will be sharing this story with a few friends; but especially two who are physician’s themselves, one still in residency and the other a first time teacher in NYC. I know they both will be touched by your words, as they have touched me.
May your blessings continue.
Joey
I think this world would be almost perfect if we had doctors as connected and caring as you.
Judi, give me a break he writes a deep, heartfelt, compassionate post about his recent loss and your ONLY comment is to dig up one sentence in the entire entry and refer to it as arrogant and a petty judgment about not getting the pronunciation of her name correct? Negative much?
Alex, you blow me away with how gracious and bodhisattva-like you handle snide comments. I aspire to be much more like that; for the most part I enjoy the comments from most of your readers. Rhea must have rubbed off on you. LOL
Joan was also very blessed to have you in her life for that amount of time and you got to share your fabulous family with her. I can see Rhea munching on those cashews after one of her runs. LOL I know you’re just as an amazing husband to Rhea and father to little Cruise. I can’t wait to see you guys next Spring on my trip to Chicago. Thank you for sharing this heartfelt post. The ironic thing is my father died with the exact same diseases. He also had Parkinson’s disease along with congestive heart failure and diabetes. It was hard to see him with all that at the end of his life and reminds me a long life without your heath is NOT a good one.
Thank you for sharing this heartfelt post.
Dear Alex: What a dear physician you are. I knew Joan but I never met her in person. We spoke only on the phone when I was trying to call her daughter, who is like a sister to me. I think Joan did have a heart of gold but her daughter’s is just as precious. Due to her daughter’s exceptional care Joan lived far longer than the doctors expected her to, given her many diseases. The numerous conversations I had with Joan when her daughter was not home enabled me to know her caring and loving nature. But the apple did not fall far from the tree as her daughter has the same compassion and helps to make this world a better place with her in it…
Thank you for reminding us of what is truly important…
Joan did not pass through this life unnoticed—and because you choose to share her story, she continues to bless us.
Thank you for sharing. What more could a person ask for than to be remembered in such a way?
What a beautiful post. Thank you for reminding us all that the little things we do for others—the things that we think are insignificant—become treasured memories for the recipient. So sorry for the loss of your friend. What a gift that she left you so very enriched. First, do no harm…right? We should all practice that one more.
Take Care,
Jill
Jill’s current post: Romper Bomper Stomper Boo.
What a beautiful tribute. There are so many people who suffer stoically and their fortitude goes entirely unremarked upon; it’s good to be reminded of them, for they are role models for us all.
I believe my 91-year old grandmother is one such woman. I wish she had a GP or gerontologist like you, who could bear appreciative witness to her long, painful journey through the health care system. When my grandmother has bad days, and they are constant now, she isolates herself because “when she’s in a bad mood [due to tremendous chronic pain] she doesn’t want to bother others with it.” She volunteers no negative information unless pointedly asked. We all know a select few individuals like this.
I would imagine Joan benefited enormously from her warm relationship with you, in ways that are impossible to quantify but that we all know exist.
This is indeed a beautiful tribute, and your blog overall is generally moving and thought-provoking.
However, I must say that I was a bit taken aback to learn that after my death my next-of-kin could give my personal physician permission to reveal my full name along with specific details of my medical history to the entire world, as you have done with your patient here.
I understand that people who die of uncertain causes automatically lose privacy rights after their death, because the law may need to inquire into circumstances, which can require revealing medical history records to the courts and possibly to the press. Obviously, this could happen to Michael Jackson, for example.
But imagine a different scenario for Michael Jackson’s death. Suppose he had been struck by lightning in circumstances suggesting no possible foul play or medical misbehavior. Suppose also that Michael Jackson had had a wonderful relationship with his personal physician, who wanted to share that moving story with the world, including some details of diseases he had had. In the absence of legal questions about cause of death, would anyone think that Michael Jackson’s next-of-kin had the right to give permission for such revelations to that personal physician after his death? I think most thinking people would say no.
Unlike Michael Jackson, your patient comes across as a modest and unassuming private person. She also comes across as someone who was reluctant to burden others by sharing the details of her medical complaints. She apparently died in circumstances that did not require a public legal inquiry into her medical circumstances. Should she have fewer legal rights than I think most thinking people would have accorded to Michael Jackson (in the absence of legal questions about cause of death.)
Perhaps her daughter and you both feel you knew her well enough to be sure that she would not have minded such revelations, and it sounds like your relationship with her was such that she might have given such permission herself, if it had been possible for you to consult her after her death. And perhaps, in some afterlife somewhere, she is reading this post and beatifically radiating joy at this moving tribute.
In the absence of absolute certainty as to her wishes, however, would it not have been better to use a pseudonym in your public post?
I want to clarify my previous post. Under HIPAA, it’s clear that if the daughter was the designated “personal representative” for her mother, the legal rights to authorize disclosures of medical records were clearly vested in her after her death. The same would be true for Michael Jackson’s designated “personal representative” under HIPAA.
But my question was not really about legal rights as much as moral rights. Your post inspired me to check HIPAA. The legal rights seem pretty clear in this situation, but the moral rights do not. Even if he has a legal right, does a doctor have the moral right to disclose such personally identifiable medical information after death to the entire world?
I can understand a doctor sharing all medical information directly with the personal representative. The personal representative is entitled to that information, which she may need for a variety of purposes, including dealing with medical bills and insurance. She certainly also has the right and responsibility to share relevant information with family members who need access to their family medical history.
But does the physician really have a moral right to disclose the patient’s personal information to the world just because the personal representative’s consent gave him the legal right to do so? I just find this troubling. An analogous kind of reasoning would apply if the patient were in a long-term coma.
Given my limited understanding of Buddhism and the Buddhist belief in reincarnation, perhaps there’s not a great deal of difference between death and a coma.
Thanks for clarifying that, Alex. I guess I’ll use my last name now. I think anybody who has seen my previous posts knows I would NEVER type anything like that. LOL
I didn’t know Joan, but something tells me she really doesn’t care now nor does it really even matter anymore. I do find it funny how we think people who have passed hang on to these kind of things that may have mattered while they were alive. Trust me, she’s not holding a grudge.