Delivering hard news to patients

[Ryan_eyeball]

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I'm currently at a clinic with two OMD's and we see about sixty patients a day. Really all I do is the Slit lamp and DFE's on these patients. Its a practice that is heavy into pathology (one retinal doctor, and the other cataract/glaucoma). Most of the patients we see are above sixty years of age, and rarely see someone 30 and younger. Well anyways I saw this one patient that I'll never forget.

This patient was an 18 year old girl that was referred because of nightblindness and running into things at night. She wasn't sure why she was being seen again, and just that the referring doctor said she needed to see more of a specialist ( the referring doctor obviously told her very little). So this clinic was nice that every patient I get to see is already dilated, so I take a gander in the back, and see Retinitis Pigmentosa (RP). It had a pretty much text book appearance and was easy to diagnose. If anything I was hoping that it would have only been sector RP (a quandrant instead of the whole retinal area). I talked with the attending doctor, and comes in for just a second to look with the BIO. He comes out and we converse for a few minutes. He told me to tell the girl and her mother the condition and the prognosis ( he said he wouldn't go back in, because I needed this experienc).

Soooo, I go back in and the girl is about to start college in another two months, excited about sorority rush parties, and an attractive young woman. So I sat there gathered my thoughts, and broke the news to the girl that complete retinal RP carried a genetic component and the chances that she would be blind by age thirty five were high. It was very hard to see a mother and daughter sit there in the room there and see their eyes fill with tears. I always try to break bad news with some hint of hope with low vision rehabilitation, but with RP the outlook is probably bleak.

Maybe it was more difficult because she was so young already, younger than me. I love this rotation, and ready to graduate in what ten more months.

How do you handle situations like these?

 

[Jawfixer]

Ryan, tough situation no doubt.

I have often had to tell pt's and their families they have cancer and then go through the prognosis.

Other times I have had to tell a family member their sister, brother, child, or spouse was going to loose an eye to trauma or that possible further mental defects may continue or increase in severity.

What I have found families look for is honesty and answers. They want someone empathetic but also someone they can lean on. Do not what if with pts. Pts will say, what if the test shows this, what if the biopsy is positive? Here is my answer...we can what if all day and that will do nothing but make us all wonder and possibly suffer unneeded stress. I tell them we tackle things together and try to reduce future complications.

For instance, in your situation sure statistics say blind by 35. But think about this, in order to get that statistic there had to be people under and over 35. Why can she not be one of the ones over 35? Give her hope! Not unrealalistic hope, but hope.

Also, you never know about being wrong...you will find pts will not do what the textbook says they should; they all do not read the textbook.

Also, although this is intially "bad" news to anyone, who knows...this may giver her some direction in her life. Maybe she will go to school with the intent to find a cure. Maybe she will start a charity or support group.

Everything in life happens for a reason and everything seems to work out in the end.

 

[rpames]

The 3rd patients I ever saw in clinic was there for a follow-up b/c of suspicious cups. I go to do the visual field and she had a bitemporal hemi. I printed them off and talked to the attending, of course I was right...most likely a pituitary tumor.

Luckily my attending broke the news and we sent her for an MRI. It was a nice eye opener that we, as ODs, will be the first to deal with some pretty major systemic pathologies.

I guess the best thing to do, as Jawfixer said, is be honest. I think it would be worse to to just send the patient to another doctor for a consult and let them deal with breaking the news.

 

[Tom_Stickel]

For instance, in your situation sure statistics say blind by 35. But think about this, in order to get that statistic there had to be people under and over 35. Why can she not be one of the ones over 35? Give her hope! Not unrealalistic hope, but hope.

Also, you never know about being wrong...you will find pts will not do what the textbook says they should; they all do not read the textbook.

Also, although this is intially "bad" news to anyone, who knows...this may giver her some direction in her life. Maybe she will go to school with the intent to find a cure. Maybe she will start a charity or support group.

Everything in life happens for a reason and everything seems to work out in the end.

Ryan,

I certainly agree with jawfixer about trying to give some hope. The other thing you want to do is to be available for follow up questions. Make sure they know who you are and where to find you. They won't be thinking clearly right away and they will have many more questions later.

I don't agree with the doctor that sent you in there. It was a complete cop out, IMO. He's the doctor and it's his job to deliver the news. It's pretty powerful stuff just watching someone else do that, and if you're empathetic at all, you'll pick up what you need to know. There's plenty of time later for you to have to do it.

Last thing to say is that every patient is different, and every one will want something different out of you when you break bad news. Some want a shoulder to cry on, some want answers as to their prognosis, some want someone to blame. Try to be sensitive to this. For instance, and no offense jawfixer, but if someone told me that I had cancer but don't worry because it happened for a reason, I'd be very angry at that doctor and wouldn't go back. The longer you're in Optometry, the more you'll realize that sometimes senseless bad things happen to good people for no good reason, and there won't ever be a good reason. So make sure you don't say something like that unless you really feel it will help that particular patient.

My two cents,

Tom Stickel
Indiana U. 2001

 

[Jawfixer]

Stickel,

Non taken, I did mean to say that to the patient. I was simply trying to relay my own personal feelings about the bad things that happen to people and how I cope.

I certainly agree with the above post about a cop-out on making you deliver the bad news. The medical school I attend does not allow this responsiblity o be handled to students; it is for residents and attendings only. The students are involved so they may learn, but this is too much to ask of someone with limited experience.

 

[Ryan_eyeball]

Stickel,

Non taken, I did mean to say that to the patient. I was simply trying to relay my own personal feelings about the bad things that happen to people and how I cope.

I certainly agree with the above post about a cop-out on making you deliver the bad news. The medical school I attend does not allow this responsiblity o be handled to students; it is for residents and attendings only. The students are involved so they may learn, but this is too much to ask of someone with limited experience.

Thanks for all the great information, and tips for this scernario. The only thing about the rotation is that I'm not actually at a school site. This is a private practice with two OMD's, so they probably don't really care if I had to deliver this news or not. The glaucoma/cataract OMD isn't all that nice with patients (the one that was there that day) but the retinal specialist is very patient friendly.

Thanks again.

 

[MiesVanDerMom]

As a mother who has received a lot of bad medical news about her son (including his eyes), I wanted to throw my two cents in. I think one of the best things a doctor can do is to normalize the situation. What I mean is, the patient is being told they have some medical condition they've probably never even heard of. Since you see patients with these conditions, you're familiar with the condition and see patients dealing with is all the time. I think if you remain calm and convey this, it really helps the patient to accept the diagnosis. I also agree with PP: you freak out at first and then calm down and have questions. Don't feel obligated to offer hope if it's a longshot. Just be honest and resepctful. Above all, the patient wants to feel confident in their doctor's ability. And chances are they are embaressed to be crying/freaking out in front of you. So be a little sympathetic. Don't show pity though because the patient is thinking "god, he's a doctor who sees sick people all the time. if he's acting this way I must be REALLY screwed."

 

[ProZackMI]

I'm currently at a clinic with two OMD's and we see about sixty patients a day. Really all I do is the Slit lamp and DFE's on these patients. Its a practice that is heavy into pathology (one retinal doctor, and the other cataract/glaucoma). Most of the patients we see are above sixty years of age, and rarely see someone 30 and younger. Well anyways I saw this one patient that I'll never forget.

This patient was an 18 year old girl that was referred because of nightblindness and running into things at night. She wasn't sure why she was being seen again, and just that the referring doctor said she needed to see more of a specialist ( the referring doctor obviously told her very little). So this clinic was nice that every patient I get to see is already dilated, so I take a gander in the back, and see Retinitis Pigmentosa (RP). It had a pretty much text book appearance and was easy to diagnose. If anything I was hoping that it would have only been sector RP (a quandrant instead of the whole retinal area). I talked with the attending doctor, and comes in for just a second to look with the BIO. He comes out and we converse for a few minutes. He told me to tell the girl and her mother the condition and the prognosis ( he said he wouldn't go back in, because I needed this experienc).

Soooo, I go back in and the girl is about to start college in another two months, excited about sorority rush parties, and an attractive young woman. So I sat there gathered my thoughts, and broke the news to the girl that complete retinal RP carried a genetic component and the chances that she would be blind by age thirty five were high. It was very hard to see a mother and daughter sit there in the room there and see their eyes fill with tears. I always try to break bad news with some hint of hope with low vision rehabilitation, but with RP the outlook is probably bleak.

Maybe it was more difficult because she was so young already, younger than me. I love this rotation, and ready to graduate in what ten more months.

How do you handle situations like these?

Ryan,

As a psychiatrist, I rarely have to tell patients bad news about their health, but as a resident, in internal med., I had to be the bearer of bad news to many patients. As a clinician, the best thing you can do is to be honest, direct, and provide the patient with as many facts and details as possible. Simultaneously, you have to be compassionate and supportive and offer resources and information that may help them do some research on their own.

For example, I remember talking to a patient, a man in his 50s who worked a GM assembly foreman for years, who was into hunting and fishing and made wooden furniture on the side, who was having vision problems. We found that he had macular degeneration with extremely limited vision and constricted fields. I gave this man as much information as possible and encouraged him to do his own research, network with others with this condition, and consult the best OMDs around his area. It's never an easy thing to do, but if you're honest, sincere, and compassionate, it'll make your unpleasant task easier.