I went to a patient\’s funeral this past weekend. I generally don\’t do that for people whose relationship I\’ve built in the exam room. It\’s a complex set of emotions, but invariably some family member will start telling others what a nice doctor I am and how much the person had liked me as a doctor. It\’s awkward getting a eulogy (literally: good words) spoken about me at someone else\’s funeral. This patient I had known prior to them becoming my patient, and his wife had been very nice to us when we first moved here from up north.
But that\’s not why I am writing this. As I was sitting in the service, the thought occurred to me that a patient\’s funeral would be considered by many to be a failure for a doctor. Certainly there are times when that is the case – when the doctor could have intervened and didn\’t, or intervened incorrectly, causing the person to die earlier than they could have. Every doctor has some moments where regrets over missed or incorrect diagnosis take their toll. We are imperfect humans, we have bad days, and we don\’t always give our patients our best. We have limits.
Yet if patient death was the measure of a doctor\’s failure, then all doctors would be 100% failures in the big picture. Doctors are not the only imperfect thing; the human body is frail, people make bad choices about their own health, and life itself is hard and unpredictable. In reality, doctors are putting a finger in a dike that is crumbling to pieces. We are stalling, holding off the inevitable when we succeed, and standing and watching the inevitable when we fail.
This doesn\’t just apply to death, it also applies to suffering. The huge number of comments on my last post bear witness to the vast numbers of people with chronic pain, illness, and suffering. It some ways, for a doctor, the death of a patient is easier to deal with than the impotence felt when we are unable to help a suffering person. There is always the question of whether we are missing something that could help. There is the pressure from the expectant face that hopes we can fix what has been unfixable up to now, and the weight of the defeated faces of those who have lost that hope. It\’s hard to stay above the emotion of those encounters when your stated job is to fight disease and minimize suffering.
Which brings me back to the funeral service. After the service I greeted the man\’s wife with a hug, reminding her that I am available to her if she needs anything. She thanked me for the care I gave to her husband and for the ways I\’ve helped her through this time. In a lot of ways, it was my presence that mattered most.
The word \”sympathy\” comes from the root words meaning \”to feel with.\” The word \”compassion\” comes from the root words meaning \”to suffer with.\” I remember once looking at a beautiful mountain vista by myself, thinking how much better it would be if there was someone to share it with. The addition of that person wouldn\’t add to the beauty, but it would somehow validate it if someone else shared the awe and wonder I felt at that moment. My role as doctor is not just to stand with people, but to help them. Yet I cannot forget that I do see their pain without veil, I do experience the difficulty people live, they don\’t hide their tears from me; and that fact somehow made it better for them.
Perhaps that is what many of the docs who flee the chronically ill patient are missing: you don\’t always have to fix things to make them better. You don\’t always have to relieve suffering to give care. It\’s great when you do, but in the end the most important thing is to be there. To feel with and suffer with people as they make their journey through this life.
Wow, two powerful posts in a row! It is great that you have taken time to express some feelings that many of us forget about and to remind us that doctors are human. We as patients too often forget that. I will now need to think more about how my doctors are thinking when I have my next appointment. Thank you.
Often it's simply being there that matters.
Well said, Rob.
“In reality, doctors are putting a finger in a dike that is crumbling to pieces. We are stalling, holding off the inevitable when we succeed, and standing and watching the inevitable when we fail.” This is not, IMHO, the best of job descriptions. I have known for quite some time that it is not going to end well. I do not consider the fact that I woke up this morning to be anybody's success, nor will my widow see my death as anybody's failure. Your job, should you choose to accept it, is to ease the burden of the trip. If you have made the journey less painful and less wearisome, you have succeeded. If I can work with you on this task, together we will have succeeded.
Thank you, this is very beautiful and moving and wise.
OMG! Rob, you have said it all now. That's exactly what I require most in a doctor – to be there to accompany me along the way. Death is in the future for each one of us, there's no escape. But having a doctor ( and other caregivers) who can “feel with” and “suffer with” their patients is the very thing for which I hope in my own life. I think men in general are wired to “fix” things that break down or go wrong, but I can tell you, as a woman, pretty much what we want most of all is for the man (or doctor – man or woman) to just be there, be understanding, and stand with us. . .and let us talk. This, like crying, can afford so much relief and comfort for us women. We don't always require you to fix or get rid of the problem since often it can't be fixed. Just BE there for us. Obviously, I can only speak for the female side of the equation; however , I think men, at some point, also just want the comfort of presence and understanding. You give us such insight into your heart, Rob, in so many of your entries here, but this one is totally outstanding. Thank you so much for giving us the inside glimpse.
Thanks so much for this very honest post. It's a great challenge to remember what actually matters 🙂
Wow, what a beautiful writer and thoughtful person you are. You embody the word “doctor” and I'm sure your patients know how rare it is to have somebody like you involved in their lives and care.
I found your blog through a link and I am glad I did. I have only read two of your posts, and I am hooked. I will need to find some spare time so I can go back and read your older posts. Thanks you for showing us the “real” side of Doctors.
What a lovely, moving post. There is no cure for death, but the compassion you bring to those of us facing the end of life is priceless.
Your letter to patients with chronic disease was equally good, and your advice on how to communicate with doctors should be handed out to everyone in that unenviable club; I know I will be sharing it. It's a good one to add to your Patient Rules heading too.
“You don’t always have to relieve suffering to give care. It’s great when you do, but in the end the most important thing is to be there.” ~ Dr. Rob
That's going on my little (okay…long) list of quotes 😉
Hi Dr. Rob. I enjoy reading your blog a great deal – possibly because your sense of humor is as strange as mine – but probably because I also have been a health care provider. I am an RN but as of seven years ago, I also became a chronically ill patient. How strange to straddle both sides of the provider/patient relationship.
Most of my previous experience in nursing has been in hemodialysis, so I can relate strongly to those relationships that are built when committing to the care of a chronically ill patient – most dialysis patients unfortunately are on dialysis for life.
I truly thought that since I had many years of experience dealing with chronically ill patients, I understood how they felt. It is only since I have become disabled due to my autoimmune disease that I realized how completely wrong my assumption was. I can say unequivocally that when I realized that my illness could not be cured and that my quality of life would suffer indefinitely, I also realized that I had no clue for all those years what my clients were experiencing. I appreciate your effort to understand and empathize with your chronically ill patients, but please know……when you are forced the other side of the HCP/Patient equation, that it's not the experience that many HCPs envision. My life has been changed in ways that I would never have predicted. But I appreciate the fact that you and many other doctors like you, such as my rheumatologist, make the sincere effort to accompany me through the struggles.
You really seem to get it, bless your sweet little doctor heart 🙂 The message was similar (though I must say yours was MUCH better) to what I wrote after a horrible dr. appointment to one of the last doctors my husband went to …
“It is not your fault my husband is ill, and it is not your fault he may have [blah, blah, blah], or even that you may not understand what is wrong. But your empathy and understanding would have gone a very long way.”
I am just so grateful there are still people like you out there that genuinely care. I hope and pray that when/if my husband decides to try his hand with doctors again, that we are fortunate enough to find someone with your same gift for empathy and concern. Thank you, seriously.
From my perspective as an internist and 20-yr survivor of (recurring) lymphoma, I wrote an article for oncology professionals who equate death with failure.
You can read “A Meeting with Failure” online at http://tinyurl.com/OT-011006
With respect and hope, Wendy
That last paragraph there? Is exactly what so many of us chronically ill patients wish not only our health care workers knew, but our friends and family, too.
The Chronic Illness Experience: Embracing the Imperfect Life by Cheri Register is a great book and I think both doctors and patients will get a lot out of it. Julia–you might enjoy it. It really lays out the full experience of having one or more chronic illness.
Thanks for writing these blogs. It's nice for my doc and I to read and talk about, it has opened more doors of communication, understanding her thoughts better and her mine.
I Believe that everything and anything is easier when not done alone. Death takes many forms. There is tragic surprise death, young death, old death, death due to illness. To hide from death is to never again hold a newborn, for death is as natural as birth. And, I’m sure to treat chronically ill patients and see so much death is, in turn, to feel sad, concerned, angry, lost and often helpless—and to do all this, for the most part, silently. What an incredible high price to pay for helping us and their are fare more of us then you. Every victory is yours as much as ours. You give us more hope and a reason to fight harder. We the sick, know there are times when you feel helpless. You never are, for your presence brings us strength, and your love gives us our reason to fight. Please never under estimate the power of hope and kindness it's invaluable medicine.
Personally I have seen the best and the worst of docs. My doc and I have a kind of a love hate relationship. She loves me when I'm well and hates me when I'm sick and I'm okay with that, she works best when she is mad. My doc is my hero, without her, their would be no me, to write this. She is one of the great ones, one of the few that get it, as you do. It’s not the old doctors who get it, or the smart doctors, it’s the kind compassionate doctors the ones who hurt with us and heal with us, who get it. My doc has done the remarkable, dropped the shield of self-preservation, of distance, that often stands between them and us. I am aware of the awful high price she might pay for doing so, but I am so extremely thankful she is willing to do so. She has walked through the darkness with me, knowing that she will never cure me but can be there with me not because she has to, but she choses to. No words can express the appreciation I feel for her doing so
beautifully said dr rob:
“My role as doctor is not just to stand with people, but to help them. Yet I cannot forget that I do see their pain without veil, I do experience the difficulty people live, they don’t hide their tears from me; and that fact somehow made it better for them”
in your spare time (i know, what spare time??) – you need to do a talk show, a book, a magazine, or all three. you're just brilliant at articulating the plight of doctor's and patients.
“you don’t always have to fix things to make them better. You don’t always have to relieve suffering to give care. It’s great when you do, but in the end the most important thing is to be there”
As we say in rural Mass., “Ah, yu’.” Translation: you got it.
The question in my eyes, which looks like guarded hope when I meet a new doc, is not “can you fix me?” but “will you not abandon me? Will you treat me like the decent, well-informed person I am? Will you be honest with me?”
I’ve got a few who seem to have the right answer. I’m lucky!