Does this really happen?

[EastCoastLadi]

In my never-ending search for information, I happened upon this article from a couple of years back....it just brings tears to my eyes

Grace

(Jane Brody, NY Times)---The letter that appears below was written by

the husband of a woman whose oncologist had cared for her for nearly

seven years, and then abandoned her in the final weeks of her life.

A copy of the letter was sent to Dr. Diane Meier, director of

palliative care at Mount Sinai Medical Center.

Dr. Meier told me, "I have seen this happen hundreds of times, causing

profound hurt and injury to the patient and family that compounds the

losses a thousandfold. Patients wonder what they did to offend their

doctor, why they are no longer worthy of attention. And, of course,

patients do not realize that since they 'failed' therapy, the doctors

feel they 'failed' the patient. When patients are so sick, the

doctor-patient relationship is deeply personal and vulnerable and

unequal. Doctors need to know the cost of this behavior for their

patients, whose interests they are sworn to put first."

So, like Dr. Meier and the bereaved husband who wrote this eloquent

letter, I am hoping that physicians whose patients no longer respond

to active therapy will read this column.

The husband chose to bring his wife's experience to public attention

in the hope that other dying patients will be spared similar anguish.

I have deleted the doctor's name, the name of the patient, and the

hospital where she was treated, because the point is to highlight not

the specifics of this case, but the broader point about a behavior

that, as Dr. Meier points out, is all too common.

The doctor works at a major New York cancer center.

======================================

Dear Doctor: I'm writing to you in reference to my wife, who died on

May 29, 2004. I wish to make clear from the outset that I am not

impugning your medical competence but am seeking to bring to your

attention what, in my opinion, constitutes a grave breach of the moral

contract you entered into with her.

As you know, my wife was diagnosed with lung cancer in 1997 and was

treated successfully by you for almost seven years. During that time,

she developed a relationship of confidence with you which, given her

many unhappy past experiences with doctors, was both encouraging and

surprising.

And yet, at the end, to her (and my) profound disappointment, you

failed her. When you realized that you could do no more to reverse her

progressive disease and that death had become inevitable, you

abandoned her. You evaded her telephone calls; you waited 10 days

before informing her of the April 2004 CAT scan results; you pulled

away. The empathy you had displayed was replaced by what she

experienced as indifference. And, sadly, your behavior dovetailed

perfectly with the New York Times article "Facing Up to the

Inevitable, in Search of a Good Death" of Dec. 30, 2003, which speaks

of physicians who withdraw from patients rather than address feeling

'guilty, insecure, frustrated and inadequate.'

It is true that you informed my wife, offhandedly, that the hospice

staff would care for her during the final phase. As they did - with

dedication and great dignity. However, your coldness during her final

weeks made it more difficult for us because she felt that she had lost

the medical anchor you had provided and no longer had a doctor she

could trust to explain what was happening to her as her body withered

and her vulnerability grew.

Much precious time was wasted trying to turn her mind from your

dismissal of her that she experienced as a professional and personal

betrayal. Which I believe it was.

Would it have cost you so much, doctor, to have picked up the

telephone to speak with her after almost seven years of treatment?

Would it have been so intolerable to you to have looked into her eyes

- at the hospice perhaps - and told her that you wished her well and

wanted a chance to say goodbye? Were you truly unable to offer even a

shred of comfort, a word of condolence to her family? Had she really

become no more than another statistic, a failure you preferred to

brush aside?

I am asking you to help ensure that oncologists like yourself, who

work with many patients they are bound to lose, not abandon them

emotionally, as you did. I am asking that you suggest that your

hospital consider setting up a training program for doctors like

yourself so that other patients can be spared the pain of the

rejection my wife experienced. Because it is my conviction that

doctors treating terminally ill patients have a moral obligation to

stand with them from start to finish even when, at the end, those

patients must be transferred to hospice care. It is not easy for me to

tell you that from this perspective, I believe that your failure was

monumental.

Perhaps this letter will help you display greater feeling with future

patients and not ask them, as you did my wife from a distant height,

'What would you like us to do for you?' What she wanted you to do was

simple: she wanted you to speak to her with courage; she wanted you to

show a bit of concern, which would have meant as much to her then as

all the chemotherapy you prescribed when there was still hope; she

wanted you to help her die more peacefully - as you had promised that

you would but did not. It would have made the work of the hospice

staff easier. It would have been a consolation to her and to the

family and friends who loved her.

===========================================

Dr. Dan Shapiro, a clinical psychologist at the University of Arizona,

is one of a growing number of experts who teach medical students and

physicians the importance of healing patients even when they cannot

cure them. He pointed out that "when patients are referred to hospice

care, some doctors think that it's their cue to bow out." At that

point, he suggests that patients make it clear to their physicians

that they want them to stay involved.

Dr. Shapiro advises patients to tell their doctors: "I don't expect

miracles from you. I appreciate everything you've done up to now. I

and my family would be grateful, even though I may be dying, for your

continued help with my quality of life and dignity." Patients might

then add a specific request, he said, like asking for help on how to

remain clear-headed while still getting appropriate pain relief.

Such a statement expresses gratitude and takes the physician off the

hook by saying that the patient does not expect miracles but would

like help in achieving a peaceful end, Dr. Shapiro said. "This makes

the physician feel useful and less likely to retreat."

[Don M]

This is a bit of a eye opener for me.

Don M

[MalouDP]

Thanks for sharing.

Very sad and makes me cry.

Letters like this should be send to all medical school all over the world and be studied on how doctors should treat their patient. A Simple return phone call would make a difference in a dying person.

[gail p-m]

Was a very interesting letter. As i was reading it, I realized that i need to send it to my son who is in medical school. I believe medical education is trying to address these sorts of issues these days as they should be ---

gail p-m

[adela]

I felt our doctor did the same thing to my husband.

When my husband told the nurse no more chemo, my husband tried to get in contact with the Doctor. No return call.....nothing. It was like the doctor was angry at my husband for stopping the chemo. Maybe it has to do with money: hospice less expensive than everything connected to treatment. My husband told the doctor's assistant that he was going home to die. I tried to get the nurse to obtain a order for hospice......she balked at that. It was very difficult 2 1/2 weeks.

Adela

[karenl]

Wow, what a powerful letter!! How sad that it needed to be written at all.........

Karen

[ginnyde]

When Earl's oncologist told me on the phone while I was at work that there was nothing more that could be done, I asked that he call me at home and help me tell Earl. I had given Earl so much bad news and I felt that emotionally I needed some help.

He promised to call at 8:00 that night. I put on my best Katherine Hepburn impression at home, but at 7:50 I had to tell Earl. Told him the dr. would be calling to explain everything.

First, he did not call at 8 or 8:30. I called a friend who is the nursing manager at Fox Chase and asked if she could call the dr. He called at 9.

Second, he did not tell Earl that there was nothing more that could be done. Maybe he could try some more brain radiation. Of course, nothing more could be done.

BTW, his comment on the phone as to why he did not call at 8. He was walking his dog with his son and eating cookies and had forgotten to bring his notes home. I told him that while he was doing that we were crying.

It is almost 2 years since this happened and I am still angry. I am angry at Fox Chase in general but that is a story for another day and this is not the only issue of 'lack of interest' with this doctor. I think this dr. was insensitive and negligent in his obligation to his profession.

[karenl]

I can imagine what it must have been like waiting for that phone call, Ginny . A group of us had a discussion about this subject on a forum here, with one lady arguing that she likes the fact that her doctor only works part time because she 'has a life', and is not 'burnt out'. It's actually pretty hard to find a family doctor that works full time any more. I find it really annoying, and I'm sure that my attitude is a result of the fact that my parents are doctors. My dad was an 'old-fashioned' general practitioner, who had a solo practice and was on call 24 hours a day, seven days a week. We didn't get to have family holidays, because one of dad's patients always had a baby due, and he was constantly called out in the middle of the night and on weekends. Looking back, I can see that we sacrificed alot as a family so that dad could practice the style of medicine he loved. And he won the love and respect of his patients for it. Mum found it difficult to strike a balance between family and work, so she gave up practicing medicine when we were small children. I am proud of both of my parents for giving their all to their respective choices.

It seems that medical practitioners these days want the best of both worlds, which is understandable. Unfortunately, the patient is always the loser in this equation.

I hope that if enough patients write letters like the one above, more doctors might come to understand the depth of the obligation they have to their patients, and we might eventually see a return to the practice of medicine where the patient comes first.

Karen

[gail p-m]

Ginny,

I remember vividly when you posted about waiting for that doctor's phone call because I could not believe the callousness of that man. My heart broke for you and Earl then just as it does now. Some things you never forget ---

gail p-m

[elnodel]

Ginny, and everyone....

It is SO hard to believe that things like this happen, that seemingly caring physicians can, as it were, turn on a dime and withdraw in such a callous way.

And while it does help to remember that doctors, too, are just human and probably have understandable difficulty dealing with their failure to prevent the "inevitable", it is still a necessary part of the job and something that they should be ready to tackle in a humane way. The Hippocratic "Do No Harm" surely should apply to the emotional impact of the doctor's relationship with the terminally ill patient.

I'm glad that medical schools are dealing with this now. I find it hard to imagine that our own wonderful oncologist would react like this, but I guess I shouldn't take anything for granted. I think this is something patients, or caretakers, should broach to their doctors well before it becomes necessary.

I've often wondered how oncologists deal with the constant loss of patients and thought it takes a special sort of person to handle that reality. But perhaps some of them just jettison the reality at the end...which makes the rest of them, who stick it through with their dying patients, even MORE special.

I wonder what others' experiences have been....

Ellen

[Linus]

My Mother's Dr. abandoned her too. He was a much-trusted oncologist/hemotoligist that used to be my own dr.

When he told my Mother to contact hospice, he was only looking at me as if she already did not exsist. He then turned to ME and hugged me. He never even gave my mom a hug! I mean, jeeze, SHE was the one facing eternity not me!

I just wish he would have realized that my mom needed the hug much more than I did.

[ellakc2]

It was a great letter, but what THAT Dr. did does not surprise me one bit!!!!! When the going gets tough, they bale. NOT all but most. It's the exception to the rule that stay! Very sad.

I had to back my fathers Dr. into a corner to tell my father he was terminal and at that he never truely said the word terminal. What's up with that? I would want to know the truth, but they stay with the theory of hope which is great and wonderful to a point. If you ask for the truth it should be brought to the table.

[lilyjohn]

Oh boy this brings up so many issues. It is terrible that the letter had to be written. The truth is many doctors bail on their patients at critical times. In Johnny's case it wasn't when all options were gone. It was simply when a problem arose that the doctor didn't want to have to deal with. For months he had been their star patient, gaining weight, no adverse effects from the chemo and always up beat and certain that he was getting well. It was a remark from the chemo nurse that started the anxiety and panic attacks. That is when his so called doctor abandoned him. Oh he continued to "treat" him but he would have been much better off without this doctor. His ego was much more important to him than his patient.

I believe that all doctors should have special training in bedside manners. I also believe that the nursing staff should be trained as well. They should never lie to a patient but they should NEVER deliberately take hope away from someone when they are doing extremly well like Johnny was. Had they chose to treat him properly not only would it have made a big difference in his quality of life those last two months and mine as well but they may have learned why he was doing so well. By doing that they may have learned something that would have helped others. Instead one careless remark and a doctor who cared more about his ego, not only shortened Johnny's life but threw away the chance to learn something that could have been very important to others.

[KatieB]

WOW.

Yes this does really happen, and I am so glad you posted that letter. Whatever publication it came from, I hope MANY people (physicians) read it!

[EastCoastLadi]

I wanted to bump this up today, because I think it is so important, very sad but true. Especially when I read about some peoples' experience w/ end of life issues. I often wonder how far have medical ethics have gone?

Grace

[Larry]

All i can say is i bet those Doctor's do not refuse payment's from patient's at the end.. I read just the other day that Doctor's are no longer held under the Hippocrates Oath and some word's had been changed in it. Maybe somebody with a better Memory than mine can correct or support that info....

[lilyjohn]

Only 13% of new doctors take the oath. If you would like to read more on this subject look up "Futile Care Policy". That pretty much says it all

[twodogs]

There is a movie titled The Doctor starring William Hurt that I saw several years ago. I was moved by the movie back then, not knowing or having a clue what the future was to bring. It deals with an oncologist who is very cavalier in his treatment and relationship with his patients.

As fate would have it, he himself is subsequently diagnosed with cancer and subjected to all the trials, tribulations and indignities that many of us have encountered.

It's still shown on TV from time to time. I always thought that movie should be on a list of annual required viewing for these guys just as a reminder.

[blaze100]

This is so awful. But I can believe it. I've heard similar stories from others about my own onc. I know it must be true.

I think deep down these docs are traumatized by their work. Can you imagine day after day going from room to room visiting folks with cancer, telling family the situation is getting worse, or CT was bad, new spots, chemo is not working. It's gotta be self protection causing them to distance themselves.

Barb

[twodogs]

Blaze,

Yes these stories are difficult to read and cope with. Like many of us I still see my two primary Onc's frequently and think they are the best in the world. I have observed them dealing with difficult situations from time to time and have not detected any detachment on the part of either of them. Of course, I'm not there all the time so I can't be sure.

I do know Oncology care and treatment is tough on the staff. You just can't be good at it without getting attached. Most of them do.

I guess we all have flaws but I hope my doctors continue treating me as they always have. At least until they retire and I get to train new ones.