Informing the dying. (Depressing.)

Factual Questions
1

The problem is that I have to tell someone that the tumor that was just removed (for the 4th time.) will be back, probably within 4 - 5 months and she won’t be able to handle the next surgery. She’s done the radiation which didn’t work and can’t be done again. The chemo (two rounds of heavy duty poisons) didn’t do diddly. No blame to the docs, she has the best and most dedicated bunch of doctors that anyone could ask for.
How does one go about breaking this kind of news, especially to someone still in denial? Are there any good resources on this? Standard techniques? I don’t want to tell someone that they are going to lose this fight but don’t feel like I have a choice now.
I’d be grateful for any recommendations, especially from someone who has had to do this before.
It will probably be tomorrow before I can reply as I have to be in the hospital tonight.

Thanks

Testy

2

testy I’m so sorry for your pain. I can’t imagine telling someone that, especially someone close to me. What support are the doctors giving you? I would have hoped that a doctor type person would be the one to give this sort of news to an adult patient.

Sometimes life sucks.

3

Thank you, and yeah, life is sucking pretty strongly these days. I agree that having a doctor tell her this would probably be best but there are a couple opf issues there. The doctors (oncologists, surgeons, radiation guys, even her nurses) are very close friends of ours. My wife is Thai and her English is poor. Hinting around is not going to do it.
Anyway, the upshot of it is that the doctors and us do not have the clinical, impersonal relationship that is probably desirable. One doctor actually broke down and cried in my presence. He told me that if there were only one person he could have fixed he’d have wanted it to be her. It was maybe unprofessional of him but that is how close we are. Please don’t think that is a slam on the doc, he is ex-Sloan Kettering and about as good as it gets.
The other thing is that I feel I would be abdicating my responsibility to her.

We’ve been married for nearly 20 years and I lied when this thing started 4 years ago. I was trying to protect her. I didn’t want to tell her that she was going to be killed by this thing. My lack of honesty has dug a hole for myself and for her as well.

I know docs have to tell patients that they aren’t going to survive, if not routinely then at least occasionally. I was hoping that one of them might come along and tell me how they did it.

Best regards

Testy

4

There is no script for dealing with matters like this but a couple of thoughts may help. Don’t rush the process - it doesn’t have to all be resolved in one fell swoop. Pick your times and places to have the conversation. Plan what you are going to say according to how you think she would like to talk about it. She may prefer it if you ask her questions and draw forth from her what she already knows - which will usually be more than you realise.

Most importantly, go slowly. Doctors routinely stuff up passing on information by simply pouring it all out. They are subsequently shocked that the patient thinks they weren’t told things. The doctor knows he gave the information but after hearing “cancer” or “surgery” or “death” the patient’s comprehension skills are often very low.

Sit and have a talk with your wife and ask her how she thinks she is going. Ask her if she thinks the disease may not be finished with her. Find out how she feels about it.

5

Testy, I’m so, so sorry.
I can tell you what the tell us as medical students, but I don’t know if it’ll help.

This shouldn’t just be you and her, have a doctor or a nurse with you, please. One-on-one can turn into a confrontation, it should be more of a supportive conversation.

Take your time, make sure there is nothing that will interrupt you, so that you can spend as much (or as little) time as you need to.

Try and do it in a private place, and one that ideally doesn’t have astrong emotional attachment for either of you. From that moment on that place will be the place you told her, so it shouldn’t be somewhere where that will mean cancelling out good memories.

You have to be honest- answer whatever questions she asks truthfully, and if you don’t know, say that, but try and find out or get someone who does know to talk to her.

She may not be in as much denial as you think- she might have picked up on some of the vibes going around and know that something is up. Try and sound out how she thinks you and the team is feeling, and whether you’re worried.

Then just say what you said here. The cancer will return, and when it does, it will be terminal. Do not use “if” and “might” if these are not reasonable terms to use. False hope is worse than no hope.

DO NOT tell her she is losing a fight. The rules may have changed, but it’s still a fight. This is just a different challenge- one to make every day count as much a possible, and to have a good death. If you can, try and find out what a “good death” means to her, and what you can do together to make it happen.

If she’s in denial, that’s where she wants to be, and you’ll just have to work around that. Obviously you both want to be able to accept his, but if she can’t do that at the moment, that’s ok. Just do your best to say the truth until she hears it.
Again, I’m sorry you have to go through this, my thoughts (and prayers if you’d like them) are with you both.

6

Testy, I’m a doctor in Illinois and have had that conversation. Much of what I do is in ICU settings and is usually more acute, as in telling a family their loved one will probably not survive the night. There is no easy way to do it.

The only advice I would venture to offer would be to be honest with her if she asks for honesty. You obviously care about her very much; she may already know more than she admits. Aside from that, you know her as well as anyone on earth and will find the best way to talk with her, with your doctors or otherwise. Every one of us has his or her own way of coming to terms with the horrible things that life sometimes drops on us.

Also, I don’t think a doctor crying with his or her patients in unprofessional at all. We often don’t because we’re surrounded by sickness, but that doesn’t mean we don’t care. It just takes a bit more for us to become emotionally engaged. The fact that your doctor feels close to you is a compliment to you both and in my mind a sign that you have a good doctor who cares.

don’t ask offers good advice, too. Ask your wife how she feels–what her understanding of the status of her disease is. I would often start a conversation with family members this way because it helps me guage where they are–what they expect to come.

Testy, you have all my sympathies and prayers. Please let us know how things go over the coming months.

7

I know what you mean about doctors not communicating as much as they think. Even the ones we have which are close personal friends do this. It isn’t intentional, they simply forget that the patient doesn’t understand the *implications *of what they were told. This, of course, is assuming the patient even understands the jargon used.
Point taken on the comprehension skills being very low. I feel dumb as a box of rocks right now.
I think I will do as you suggest and question her to see how much she suspects and aproach the subject that way. There has never been anyting we couldn’t talk about over the years and I think this would be a good way to lead up to the subject.

Thank you.

Testy

8

Thank you. And thank you for your prayers as well. I’m not religious but I’ve certainly found out how people could take comfort from it. My wife is religious and most certainly appreciates prayer.
I’ve printed out your suggestions and will abide by them. They seem very sensible and as good a method of doing something like this as can be found. It will be about a month before I tell her. She has to recover from this last surgery before I can dump something like this on her and I’m grateful for the temporary reprieve.
don’t ask had some good ideas as well and I think I’ll kind of lead into this the way he descibed.

Anyway, thank you again for the sound practical advice. (And the prayers.)

Regards

Testy

9

Thank you. I’ll try honesty as soon as she recovers from her latest surgery. I keep thinking I should have done this sooner as she might have tried to enjoy life more and been less concerned with mundane issues. OTOH, I might also have poisoned her last few years. I can’t know this one way or the other and have decided to stop worrying about the past.
She may very well know more than I have told her. She doesn’t know how to research things but is extremely quick at picking up emotional nuances. She’s also been the closest and best partner I could ask for over the last 20 years.

I can deal with the runup in the manner don’t ask recommended and I think I can deal with the aftermath as well. The thought of her face in the instant when she comprehends what I’m telling her completely un-mans me.

I’m very pleased that you don’t think ill of my friend. Oddly, I think he was concerned that I might think poorly of him.
One of *irishgirl’s suggestions that I would like to try is having a third person present. I’ve been thinking of the mechanics of this and unfortunately I think I’ll wind up alone.
I wouldn’t want a completely new doctor to tell her as she wold be distrustful of him and would simply call the doctors we know for confirmation.
Conversely, I wouldn’t ask our friends to do this either as they are our friends and it would be much too close to simply rubbing their noses in what they consider a failure.
For the last four years, the doctors have done some things that are way above the call of duty. These guys have worked overtime to make sure my wife’s treatments were on time and used the best drugs they could lay hands on. They informally researched colleagues to find the best available guy for a procedure, and then chased him down and got him to agree to try to help. They would also stop by the house for a glass or two of home-made wine and just chat about what they’d discovered that might be useful, or simply shown up and took a quick look at her to see if she was OK. They’ve been good company when times were tough and this is not their failure or indeed anyone’s. Invasive thymomas kill people, every time. They’ve extended her life and that is the most anyone could have done.

Thank you again, I couldn’t do your job for any amount of money or satisfaction.

Best regards

Testy

10

This article might be of help:

http://theoncologist.alphamedpress.org/cgi/content/full/5/4/302

Obviously, it is written for the professional, but it might be useful. I use these ideas when I have to talk with patients about terminal illnesses (I am a psychologist who works with patients with spinal cord injuries and other illnesses, including cancer).

You have gotten some great advice in this thread. All the best to you. If you would like to talk, either now or later, my email is open to you.

Brynda

11

Thank you. The SPIKES method offerrs some good advice, especially the part about rehearsing this and not just blurting out the first thing that comes to mind. My own thoughts shy away from thinking about this, I feel like an ostrich with its head in the sand.

Thanks again for the link. It’ll help.

Regards

Testy

12

Testy, you’re welcome. I hope it is as helpful as something can be in your situation. I was in such a hurry to post yesterday that I didn’t express my sympathy for your situation. It is one thing to talk about dying to a patient, and quite another to have to talk to your beloved partner. I am so sorry to hear that you both are going through this. My heart goes out to you and I hope that you can do what many do, which is to make the most of this time, so that your heart has the balm of good memories and knowing that you helped make this time as good as it can be. When it is time for this conversation (which may be a while, after the news sinks in), I hope you and your wife can have a conversation about what she wants to do with her time, who she wants to tell, how she wants to say goodbye, etc. People make very different choices about this, so it is important to find out what she wants.

Again, my sympathies. Words just aren’t enough.

13

testy I just wanted you to know you have my sympathy and prayers. I’ve lost several people close to me and it’s very hard. Take care and good luck. I’m offering prayers for your wife, and for you, too.

14

I know that time is of the essence. Still, I have been told many times (by medical students and palliative care types) that this book by Rob Buckman is outstanding. Perhaps Amazon could get it to you quckly.

(here is another related book by the same super author)

15

Thank you both. I’m ordering the books you mentioned and have had a talk with some of my doctor friends about this. My wife is recovering but not as quickly as after previous surgeries so it will be a couple of weeks before this conversation takes place.

Thank you both very much for taking the time to help a stranger.

Testy