Loved this post, well, all your posts. This line is so perfect, "The substance of the relationship will be defined in the fire." Indeed.

I see both sides of this. Robin, I think from your perspective, you are thinking of all we have been through as Cushing's patients. As Sharon said, sometimes if the doctors would just pay a little more attention, or dig a little deeper, they would find the "fix" instead of thinking it is not fixable, instead of handing us a basket full of pills to control multiple symptoms. There are times that doctors need to look at the bigger picture, and think outside of the box. When it comes to Cushing's, there is just too many doctors missing too many things. Just my experience and opinion.

On the other hand, there are certain things that just are not fixable, and I've dealt with those as well. I think this is more of what Dr. Rob is thinking of in what he is saying. I'll discuss Alzheimer's. My father and grandmother both had Alzheimer's. When my father had it, it was very hard! As you know, Alzheimer's is not fixable, and you just watch the decline in your loved one. The situation was extra hard on me, due to the fact that was was P.O.A for my parents. I was responsible for their health care, finances, everything. I had a particular family member who kept saying thinks like, "It's not Alzheimer's! If it were my dad..." and this left me even more frustrated. It was my responsibility to take care of my parents, and some family members didn't think I was doing all that I could.

My dad had seen several doctors, all saying the same thing. I took all of his records to my PCP and had him review everything. I said, "Is there any possible way that this could be ANYTHING else, besides Alzheimer's?" He said, "No." I told him about the one person in the family who I felt was giving me a hard time with this. He explained this to me, and made me feel much better. Here is what he said. "Everyone goes through a grieving process in times like this. There are different stages in grieving. The one your family member is in right now, is denial. They cannot accept that this is happening, or that this is the way things are. They will get past this. There is nothing else you can do. You are doing the best you can." I also felt bad about having to put my parents in a nursing home. He also helped me with those feelings. I think this is what Dr. Rob is talking about. My PCP didn't spend a massive amount of time with me, although he did take his time and not rush, but by explaining this to me, he made me feel better during my suffering. It was something a pill could not fix, no surgery could fix, etc. He gave me a verbal assurance I was doing all that I could and the situation could not be made better by doing something else.

Dr. Rob, I agree that our society does not deal with pain and suffering as they should. Everyone has different ideas and different views. I always took my small children to funerals. Some people reach adulthood and have never been to a funeral, never dealt with death, etc. Then they are shocked when a parent or loved one dies and they are faced with a reality they never had to deal with before. My reasoning in taking my children to funerals was this. For one thing, death is a part of life. Death is a natural process, and we all will face it one day or another. No doctor, and no medicine will keep us alive forever. Another thing was that I knew my parents were older than most kids' grandparents. I wanted my kids use to going to funerals and talking about death, so that when my parents died, it was not so hard on the children. I also took my children into see my mother when she was dying. My children did really well with all of this. Today, many people want to take pills, or drink or find something (you mentioned TV) to distract them from dealing with pain, suffering, fears, saddness, etc. They don't want to deal with it, but there comes a day that they have to!

Sorry this is so long!

Gracie

Just my opinion but my take on "House" is look what they have to do
to get to that answer! It shows you just how much we don't know
in medicine and the trial and error and "practicing" it takes to maybe
get it right. It is just a show though- not reality,but a little bit of truth
sprinkled throughout.
I do agree with Dr Rob though somethings cannot be fixed and that is
very hard to except in a world where everything is expected to be perfect.
Why do you think even when you get "the remission" with Cushings people
expect an instant recovery and there is no patience for you not looking and
feeling peachy immediately. We need to start putting resources into more
programs helping people with cronic ailments (there is no cure for aging)
or grave diseases that you can live with but with pain and suffering. Doctors
have to be looking at things differently and hopefully in med schools they are
making adjustments for helping a very different population than a century ago.
Open minds are needed which I am sure Dr Rob has. By the way, my understanding of not everything can be fixed --doesn"t include the ignorances
I faced with a disease that is known (but rarly diag) Cushings. I truly feel I
faced a predjudice that exsists against the overweight. My suffering
with various ailments never had a chance to be evaluated as maybe a symptom
of something greater. They let their idea that everyone can fix themselves if
you just try harder, better diet exercise etc. Well that is not the case and some
times just by looking a little harder, paying a little more attention, and really listen-
ing to the patient you would have more fixes. Just a thought!

You hit the proverbial nail on the head. For 40 years I haven't wanted someone to fix me, just be there and listen, or even cry with me. Instead, because of them not understanding, they run.

That is why House is a TV show and not reality. There is a lot out there that is un-fixable.

That being said, I don't want to give the impression that I am not dogged about going after fixing. When you are sympathetic, it follows that your heart wants to help. If I have anything I can offer, I do. If I don't but think someone else does, I send.

It is far more frequent than most wish to know that you can't do a damn thing about it and the patient is left there alone and in pain.

Robin already corrected the statement "if it AIN'T broke, don't fix it." Not the way you put it.

She also said it best: "But sometimes it does need fixin?. And we count on our doctors to first find it, then do all they can to either fix it or find someone who has the best chance of doing that. The caring is great. The finding is better. The fixin? is best."

If you can't fix, point me in the direction of someone who might be able to. If you can't find out what's wrong, point me in the direction of someone who can. If you don't care, just hope I have caring friends and family around me. I have more respect for docs that do that.

I love the show "House." I love that he doesn't care. He's all about the finding and fixing. He has the rest of his staff to do the caring. I'm sure yer saying that's just a tv show, but those of us that have "tough to diagnose" diseases, need that type of care. JMO tho.

I don't "suffer with them" per se (I chose words poorly), but I am with them in their suffering. I am there when they suffer. I am a word of experience in a life that is seeing something new and confusing. Do I invest myself emotionally? I do feel sympathy toward them and express that, but I don't feel a heavy weight. In fact, I feel glad that I can offer something they don't get anywhere else: perspective.

I disagree regarding my colleagues being the cause of the shame. Most of my suffering patients isolate themselves because family members are so awkward with their suffering that it makes the patient feel guilty for even bringing it up. Yes, docs are awkward too sometimes, but that is dwarfed by our societies aversion to dealing with the brokenness of life.

Our society is what I am really railing against here - we are really messed up when it comes to dealing with pain, death, suffering, and sadness. We look at happiness as our right and anything beside that as being an aberration. That's just wrong - and I can say that based on my perspective. Our discomfort with this subject is what forces the suffering to isolation.

Rob, I know you do all that. But sharing in someone's suffering means spending time with them. Delivering bad news isn't sharing in suffering (oh, maybe it is for a few minutes) for any length of time.

"...have been there through the silent suffering of a whole bunch of people. " Being there for someone through their suffering is not just delivering the news. Or sitting with them a few minutes. It's being there day in and day out. Suffering happens over a period of time, and often a long time. It doesn't magically disappear. I hear what you are saying. I just don't think you and I agree on what suffering really is and what it takes to "be there" through it.

"No reason for shame".... I believe you mean that. However, you aren't the norm. And I have good reason to say that. Usually Often the root of the shame comes from your colleagues.

In another post you said this:

"As a doctor there is a necessary line you have to draw. You cannot become too emotionally involved or invested in your patients; if you do, you will not last long. There is too much suffering and death you will inevitably see for you to not set up significant boundaries in this area. My job is not to keep my patients alive forever; it is to walk alongside of them through the physical and emotional trials they endure, making the journey as healthy and comfortable as possible. Each year I practice I will lose a certain number of patients - some expected, some not.

This situation blurs that line. I am very sad to be losing such a wonderful part of my life. My heart is heavier than usual. But even now I remain guarded. I have to carry on with my job, see other patients, and continue being father and husband. Still I will do what I can to make it to her funeral (I have only done that a handful of times). I owe her that respect."

For your sanity, the bolded part rings true. So, also for your sanity, how much can you really share in the suffering of your patients?

I've said enough. I hope I didn't offend. I just feel very strongly about this.

I am torn in my response. I have two family members with severe disabling and painful conditions. I have gratitude when my mom goes into the ER and by some miracle she ends up with a doc who just accepts that it takes that much to keep the pain down and that my dad knows, after it having happened 10 times or so, that she will need to be put under anesthesia to reduce that dislocated hip, even though she is someone risky to put under.

On the other hand, I am disettled by the doctors, who having seen a chronic course, just seem to want to not expend any effort -- not to figure out what along the margins (or not so margins) can be done to improve quality of life. Both have fairly obvious endocrine issues, one has never been referred, one was dumped by the endo who just didn't want to bother to do even basic testing. In that context, I think that "broken" is a cop out. Its a doctor who has seen too much tv, thinks that everything has to be solvable in 15 minutes and if it can't, gives up. The doctors who I think really rock are the ones who are willing to keep trying. Like wiht my mom- our dentist (my uncle) finally convinced her to have some major dental work done -- and surprise -- the never ending parade of infections she had came to an abrupt stop. None of her non-family doctors had bothered to put two and two together -- and in fact, several had advised not to have dental work done because of her compromised state. Part of the courage is just to keep trying.

Here's the reason I say what I do: obviously our first responsibility is to "fix" problems. The problem is that most problems are not easily fixed and instead involve prolonged times of difficulty. My first priority is to help the hurt when I can. But many of the people I see are also hurt by the responses the friends and relatives have. They live in isolation and feel nobody understands what they are going through. Plus, they feel ashamed of the fact that they are sick. That's right, ashamed. It is "not the way things are supposed to be," and so it must mean they are defective in some way. Many, many patients have this perspective - especially those suffering from emotional/psychiatric problems. They are alone and feel defective. Besides the healing, it is also my job to at least make them understand that they have no reason for shame.

Family and friends are fine, but I have held the hand of over 100 new widows, have given devastating news to people, have been there through the silent suffering of a whole bunch of people. Not many people besides doctors have that perspective (clergy are the only other that comes to mind). People don't know how to suffer because they don't see suffering in our culture - in fact the suffering is shoved under the rug so everyone can feel happy.

Besides, I don't just have 15 minutes. I have seen many of my patients many times through their suffering over many years. I am always there for them. One of the best gifts I can give them is the freedom to suffer without shame.

Makes sense?

I've come here and typed umpteen responses to just wipe them out and close the page. I'm going to try again. I never win popularity contests and this is why.

Forgive me Rob and Ramona, but I need to know if you are speaking as physicians when you make those remarks or as a friend/family member/whatever-the-case-may-be. Because if you are speaking as a physician, as a patient who may need support when I am suffering, I need a doctor who finds and fixes FIRST. I have my friends and family to share in my suffering. And even if those go to pot (and I mentioned above that does happen...been there, got the t-shirt), how much time will my doctor (or you) have to share in my suffering?

In light of all the other posts on this and other mediblogs, it ain't a heck of a lot. 8-15 minutes per visit is stretching it. Not a lot of sharing goin' on there, is there?

Rob, you had a hard time even being able to go visit a patient who was dying. You never said if you got there (and it isn't any of my business, either, except that you blogged about it). If you did, now that's sharing in that family's suffering.

Words are easy. I know they are well meant. But 8-15 minutes every few weeks doesn't go very far.

"If you are around those who are suffering, don’t feel like you have to “fix it,” and don’t run away. They need you to be there. They need people to share in their suffering. The substance of the relationship will be defined in the fire."

This is so true and often so hard to do. The just being there.

Robin:
I do agree that fixing is best - there are just times where trying to fix it and not helping.

Kathleen - that is not a typo.

Thank you for this post.

Dr ROb,
This was a wonderful post.
Thank you.

hi dr rob,

so sorry . . . to say this. . .i loved your post. . .but the saying is "if it's *NOT* broken, don't fix it."

i'm an editor, can't help myself, and i truly do believe this is what you meant to write.

kind regards and thank you for your honesty

kcd

Very touching post, Dr. Rob. So many in the Cushie community are isolated either by lack of stamina or the hormonal apathy/social withdrawal that comes with the disease. Often family and friends draw away for many, many reasons. Sometimes it is simply misunderstanding. I'm sure many of your readers have read The Spoon Theory at But You Don't Look Sick. It explains so much of it so well.

And around here we say, "If it ain't broke, don't fix it" (poor grammar and all). As you already know, the point is sometimes it's not a matter of fixing. It's just being there and caring.

But sometimes it does need fixin'. And we count on our doctors to first find it, then do all they can to either fix it or find someone who has the best chance of doing that. The caring is great. The finding is better. The fixin' is best.

This is a great post Dr. Rob. I especially like the part about not running away from those who are suffering. Being ill, and isolated, and left to fight alone must be a terrible thing.