The Most-Avoided Conversation in Medicine

New York Times ^ | December 26, 2006 | Pauline Chen

[RWR8189]

J. R. was an auto mechanic of French Canadian descent with a perfectly square gap between his two front teeth and the slightly off-kilter face of a retired boxer. Soon after I met him on the surgical ward, after he had been found to have cancer, he developed a habit of planting himself in front of me whenever I got within 100 feet of his room, to spin stories about his life, wax poetic about his girlfriend, and offer free auto-repair advice.

I thought we had caught the tumor in J. R.’s colon early, but in the operating room we found that the cancer had grown into his pelvic sidewalls. After surgery, when I began to tell him that some of his cancer remained, he stopped me. “Hey, Doc,” he said. “I know I’m going to be fine because you did my surgery.”

J. R. sent me a Christmas card that year, but I could not bring myself to write back. I told myself that I was too busy, when in fact I was afraid to acknowledge that J. R. was dying. Patient deaths, for many doctors, represent a kind of failure, and so without really thinking, we look the other way.

I am not the only doctor who has had difficulty dealing with dying patients. Researchers who in the mid-1990s observed more than 9,000 seriously ill patients in five American teaching hospitals found substantial shortcomings in the care of the dying. More than a third spent at least 10 of their last days in intensive care. Among patients who remained conscious until death, half suffered moderate to severe pain. And fewer than half of their physicians knew whether or not their patients wanted to avoid cardiopulmonary resuscitation.

[weegee]

To the industry, it seems if there is no "quality" to their life, they don't matter.

[Vaquero]

I have found the medical profession to be all but useless, except to their friends in the pharmaceutical industry who court them relentlessly.

If a malady dosent fit into the doctors playbook, they pretty much dont try to help or pharm (pun intended)you out to a so called specialist, if they can figure out what specialist you need......

(ps. I have worked in the pharmaceutical industry for 28 years....)

[Clara Lou]

It pays to read the article before commenting. I did a word search. "Quality" doesn't appear in the article. This doctor is concerned about end-of-life care meeting the needs and wishes of the patient.

[pieceofthepuzzle]

"To the industry, it seems if there is no "quality" to their life, they don't matter."

It's not that. It happens for a number of reasons, and it's not limited to physicians.

It's very hard to tell someone they're going to die. The most compassionate thing to do, in my opinion, is to avoid sugarcoating the information. Patients and families most often hear the falsely optimistic sugarcoated comments much more loudly than they do the hard facts of imminent death. It's not fair to them to give them false hope. On the other hand, being very definitive to someone about their likely death often seems to lack compassion. It's a very hard balance, complicated by the natural tendency to want to avoid causing and witnessing grief.

[wastoute]

There are all kinds of doctors just like thre are all kinds of anything else. It is very difficult to look someone in the eye and take away all their hope. You may think you can do it, but until you have had to you just can't imagine. It is the worst thing a person has to do short of being on the recieving end of such a conversation.

We make it easy to avoid and the patients do as well, so one can continue to pretend there is hope when you know there is none. If one chooses to deal with a dying patient in this way it is impossible to have the "DNR" discussion and this is why so few of these discussions take place. The patients that I have tried to have this discussion with while they were still fairly healthy although the disease that would take their life is known don't really want to have all their hope taken away either, so sometimes it is the patient that doesn't want to have the "DNR" discussion.

I would like to think that in my case as a Christian I would take that discussion as "now my work here is done and it is time to go home" and be relieved, but I haven't been on the recieving end yet.

[Fairview]

It's very hard to tell someone they're going to die. The most compassionate thing to do, in my opinion, is to avoid sugarcoating the information. Patients and families most often hear the falsely optimistic sugarcoated comments much more loudly than they do the hard facts of imminent death.

There's also a stage of utter denial, during which even the most point-blank warnings of impending death are ignored. Many times patients cheer themselves because friends and relatives send them tales about other patients who beat the odds or woke up one day miraculously cancer-free. You have to practically hit them over the top of the head to get them to understand that they are not going to beat this thing. And that's a horrible situation no medical professional, no compassionate person, wants to be in.

[Clioman]

As Paul Newman said in Hombre, "We all gotta die, lady. It's just a matter of when."

[randyclark]

Sadly enough, this is the same news my wife and I heard last Monday, a week before Christmas. My mother-in-law had her second cancer surgery and was told that it had spread, and was inoperable. That Monday was also my wife's birthday. She and her mom are very close, having been raised without a father around. My wife and her step dad broke the news that the operation couldn't fix it this time, which was their decision. The doctor stopped by the next day to have that very talk.
I can't imagine telling my spouse or one of my parents that they had x amount of time to live, give or take a few years/months.
We have had some discussions about what to do next. When she was first diagnosed I told her not to worry--she was my mother-in-law, and only a silver bullet or stake through her heart was going to kill her. She laughed, as we have that kind of relationship.
Anyway, bad news for any one to hear or tell.

[goodnesswins]

Most, yes, but, NOT all....it just takes some looking....ever heard of Dr. Jonathan Wright? He has Tahoma Clinic, in Renton, WA.....he's one of the good ones. Do a web search. Some docs are waking up, as he is spending much of his time TEACHING other docs what HE does.

[SF Republican]

My cousin is married to a surgeon and said medicine very much is a practice. The doctors are not miracle workers, they are smart people with a good education doing the best job that they can. And sometimes they cannot do much even with all of the technology and miracle drugs in the world at their disposal.

[Steamburg]

Not news, doctors are human. They come with all the baggage that goes with living and it is reflected in their decision making process. They have more medical training than most and a license that says they are infallible. We know how fallible each of us is. At its best, medicine should be an interactive exercise between you and your physician. At worst, your physician tells you whats wrong without asking. If your physician can't or won' discuss his decision making process in terms you understand, he is out of his depth. Today, exorbitant fees, trial lawyers and mobile populations prevent doctors and patients from knowing each other. Often the quality of care and a willingness to communicate is more important than the elegance of your physician's credentials.</p>

[sissyjane]

When my Mom just recently died, she and I had had the DNR discussion, and she had an advanced health care directive. Thank God I had the presense of mind to take it to the hospital with me.

My Mother had an aneurism in her brain, which ruptured. We were able to honor my Mother's wishes, and keep her comfortable until the Lord took her home.

[pieceofthepuzzle]

"Many times patients cheer themselves because friends and relatives send them tales about other patients who beat the odds or woke up one day miraculously cancer-free. You have to practically hit them over the top of the head to get them to understand that they are not going to beat this thing."

I totally agree, but I don't know what the answer is. Also, as illustrated with the patient in this article, sometimes patients do much better for much longer than medically expected. This man had extension of tumor to his pelvic walls and lived for three years after his incomplete resection. Ultimately though, I think being absolutely forthright and honest about the expected outcome for the patient is always the best approach. If they aren't ready to hear that, they likely won't. If they do better than expected, then it's really nice to be wrong.

[silverleaf]

I am sorry for your wife and her mother.
(((hugs))) to you.

[oldbrowser]

It's very hard to tell someone they're going to die. The most compassionate thing to do, in my opinion, is to avoid sugarcoating the information.

One of my tenants is a diabetic and needs dialysis every other day, she is down to 80 pounds and they recently had to do surgery on her foot. Her eyesight is failing and I recently suggested that she might be better off moving to Florida to be near her daughter. She would not hear of it, she is positive that she will be back to normal soon.

[whershey]

That's pretty darn judgmental. I work in an intensive care unit and deal with people who are dying all the time. To say they receive less care is baloney. They receive the same care and caring as all of our patients do. I think you have a lot of nerve to be making such statements about a group of hardworking people (that means doctors, nurses, and all the other ancillary staff) who do their best under what are very difficult and sometimes very ugly circumstances. Happily for you when the day comes that you need help the odds are in your favor that some caring physician and nurses out there will do their best to see that you receive good care no matter what your attitude is toward them.

[21stCenturyFreeThinker]

Thanks for such a thoughtful post. I just lost my Dad to Prostate Cancer a little over a year and a half ago. It was a real eye opener emotionally as well as a view into how the system works.

We were spared the discussion about further life saving procedures since the Cancer was widely dispersed in his bones and he already had a conditional DNR from a living will signed years before. I was with him when the doctor diagnosed his condition. I knew exactly what it meant but I was shocked at the caviler way the doctor explained it to him. He seemed to just want to pass the task off to someone else. No one really explained to him his condition was terminal until late in the game.

At the time I wasn't happy with this but in hindsight I'm not sure what good a big bucket of cold water would have done for him. He came to terms with it on his own time line, asking the questions when he was ready to hear the answer. I guess all the technical stuff in life is easy compared to the human stuff. The hospice people were a great comfort as he slipped away and are truly angels of mercy.

I hope it's a while before I deal with this again. I'm really glad you're so thoughtful about how you handle your patients. I can't imagine seeing this kind of suffering on a frequent basis.

[whershey]

Tell that to the 10's of thousands of people that are alive right now because of the medical profession.

[Kolokotronis]

I know the feeling. Yesterday, over dirnks before Christmas dinner, my 59 year old brother in law told me his prostate cancer is back and he's got maybe 2-3 years. Nothing the docs can do apparently. So he might make it to 62. My other brother in law's mother was with us. She's 81, lives in a nursing home, can barely walk, can't do much of anything for herself and is so demented she knows no one and told us she was doing ok for someone who just lost her husband...who actually died 27 years ago.

The one with cancer looks at her and thinks he might be the lucky one.