OT: How do you tell a person that she is going to die?

Poststructural Pub
1

How do you tell a person that she is going to die, is there a good way?

I have a dear friend who suffered from breast cancer a few years ago. Her prognosis was not the best and after initial surgery and chemotherapy she had two years without symptoms followed by lung metastases and more surgery and therapy. Last year was a good year for her but during this summer she started to feel some neurological changes and they discovered a number of brain metastases.

My background is medical and radiation physics and I use to work with radiation therapy so naturally have had to answer many questions about treatment and prognosis during this process. I have tried to be objective and explained things in general terms and always being careful about giving false expectations but in the same time I know that I more or less unconsciously have been avoiding the hard and negative facts.

So far I feel like this has been a good path to follow as she is the kind of person that filters out the things she doesn’t want to hear grasping every small possibility of recovery that she can find. So far I guess that this has been here way to survival. She has during these years showed an enormous strength and courage, quit her full time job as a professional flute player and is now only 1 year from a master degree in engineering. Here ability to move focus away from her disease and plan for the future has been remarkable and important for her to uphold a good life quality.

Thing is now that her prognosis is very bad, based on my own experience and knowledge she has about 1-3 month life expectancy without treatment and 4-6 with treatment. I’m sure her doctor has talked to her about this but I know she avoids seeing it that way. She rather looks on the treatment as curative and believes that there is a chance that she will be ok.

It has now come to the point that I feel that I’m doing her a disservice if I don’t tell her the true facts. Even if it still exist a microscopic chance of recovery as miracles sometimes do happen I know too well that within a few months the neurological symptoms will worsen, and besides becoming much weaker she might also lose her abilities to walk, talk or to do other normal things.

I want her to know that if there things that she wants to do, people that she wants to meet or places to see, now is the time. I don’t want her to realize this when the only option is to be hospitalized. The problem is that I don’t know how to tell her this without taking away the last energy she has left. The easiest way would be to not say anything and just continue to motivate and support her but I feel a bit reluctant to do that.

If you have had a similar experience and feel that you could give some advice feel free to contact me by PM or email, as this is way OT and is probably better to take up off board.

Thanks!

/MarcusR

2

My advice would be to continue as you have been doing. No doubt her doctor has already discussed her prognosis with her, and, whether it seems right or not, this is how she has chosen to cope with the realization that she probably doesn’t have as much time as she might hope. She may well need that optimism to get by from day to day…don’t take that from her. No matter how she is behaving now, on some level I’m sure she realizes that the outlook is grim, and if she chooses not to confront that directly here and now, that’s her right.

As a friend, your job is to be just that…a listening ear, a shoulder if/when she needs it. It’s not your job, nor is it really your right, to make her face the bad news. I know it’s hard, when your expertise is in this particular field, but as a friend, you really have to leave that to the people who are actually treating her…in fact, if she asks you point-blank, I’d go so far as to say “you need to discuss that with your own doctor.” It sounds like that’s pretty much what you’ve been doing, and, hard as it is, I’d continue in that vein.

Redwolf

3

My thoughts exactly.

Susan

4

I think that Red is right on…as usual!

You are support group, in this situation. Support already.
It is not your version of reality that is important now.

5

have to say I agree with redwolf, too.

I would hazard to bet your friend knows how serious her condition is. She may be sparing YOU from knowing. And if she feels the need to do that, you must let her continue. If the time comes that she does open up about her death, then be there to listen for that, too.

Be her friend. Let her doctors and the other health professionals deal with the medical aspects.

And do yourself a favor and talk to someone in hospice - not just for ways to help your friend, but for ways to help YOU cope. You will need support, too, you know.

6

I think in the Pub there is really no Off Topic. I don’t think you should worry about that.

I have a friend who had a parent and a close friend die in very similar circumstances. Neither her father nor her friend discussed with anyone else the fact that they were probably not going to get better and they both died without final goodbyes having been said.

I have another friend whose mother died from breast cancer and, in this case, when things started going very badly her mother began to accept what was happening and everyone had a chance to say the things they wanted to make sure were said.

It lingers still for my first friend, although she was steadfast in being with her father and friend as they died, that she didn’t say goodbye to them because no one could confront the fact that they were parting. The second friend did have a feeling of really having said goodbye to her mother and that helped her to a certain extent with her mourning.

But in all the cases it was the person who was dying that guided the situation. I agree with Redwolf.

Your friend may really believe there is a reasonable chance she will recover or she may know exactly what the deal is. But she is dealing with this in the one way she can, I think.

I think you could help her best by talking about what she wants to talk about. I don’t think you are doing her a disservice by not forcing her to confront how dire the situation is. Unless there are children that need provision for or something of that nature and you are the only person who knows of that need and she is the only person that can make the decisions, then I would just let her guide me instead of vice versa.

If she starts asking you questions about her condition, knowing that you have experience that is relevant, I think you should answer truthfully making it clear it is based on what you have seen in similar cases not any absolute knowledge about her case. Then you leave the way for her to either pursue the likely outcome of her case and start confronting her death, or to continue to think she may recover.

I don’t think you can know what the results of forcing her to confront the most likely prognosis would be. Even though your intentions are good, you could make things much harder for her and I don’t think it is worth taking that chance.

7

Oh man.

I have neither the experience nor the wisdom to advise, I’m afraid, although what has been said seems fair enough to me.

I just sympathise with your friend’s sad situation, and with your unenviable position. I hope you find a best route forward, and I’m very sorry I can’t contribute anything.

8

Red has it 100% right. Unfortunately I have first hand experience in a similar situation with a person very close and dear to me. If your friend is maintaining a positive attitude she is in the best place she can be. Often peolpe that resign, get depressed etc will experience a shut down of their system much more rapidly. Telling her what she likely already knows will likely not help her. Rather be her as a friend and support, but i think it is ok to ask her what her doctors are telling her, and if she chooses to share so be it. But keep in mind for all that don’t make it there are a always the inexplicably few that do make it against all odds.
Stay strong.

9

I agree with Red. Absolutely.

10

how to break very bad news. the toughest question there is in medicine. there is no formula how to do it, it depends on the type of a person the patient is, and it also depends on what kind of a person the message-bringer is.
So, depending on the patient i have, i must have a different, adapted approach each time. But nonetheless, there are some rules i find one must abide in each situation. More of that later.
It is true that your friend is going to die, you seem to realize that yourself. Your friend probably knows it too, deep down, but still wants to hold on to anything conceivable.
I believe you should just listen when she speaks, not give her any hope, just be there and listen. Be empathetic, never lie to her about her prognosis (yes, i know you don’t), and if she asks you: tell her the truth. She must know the truth. For as you said, there may be things she still will want to do, things important to her.
We must be brutal and tough sometimes, it is our responsibility as friends to open the eyes of our dearest, for they themselves can often not see the truth, nor do they want to see the truth, and thus cannot see it either → denial.
And this, of course is the toughest part. You must go to her in a quite moment and try to bring the conversation towards life and death. Talk openly and freely about her disease, don’t make a monster out of her disease (even if it is), otherwise talking about it will just be much more difficult. And, even if she doesn’t want to talk about it, i believe you must bring up the topic. You must say what you know, tell her you find it your deepest responsibility towards her, as her friend, say that she most likely will not live as long as she might think she will and that she must now think what she wishes to do with the remaining time she still has.
It is then up to her what she does with the information, but you did what is requiered of a friend.
We must do these things. If we don’t, it’s easier on ourselves, but that’s cowardice, afterall, it’s not the message-giver that is going to die. :frowning:

11

Pray for her.

12

yeah, that won’t hurt in any case. :slight_smile:

13

Indeed, it could even help.

14

Redwolf and Blackwood ofer very wise advice. Two years ago my sister died from breast cancer. She had survived five years from initial diagnosis. Frankly she maintained her denial and anger to the end. She did not do gently into the …

She was younger than me and she was mad. It made it very hard for those of us who were around her. But it was her choice.. Over the yrs, many of us tried to encourage her to confront the reality she faced. It just made her more angry.

Your friend seems to be in a good place. Looking forward and planning the future is the right thing for her to do. Encourage it. She knows what’s up. There will likely be a time when her focus will shift. You’ll know. I don’t know if this is true in most cases, but folks in her situation want very different things from the people they are close to. I was always positive with my sister because that’s what she wanted from me. She was angry at her husband (for no legit reason). She’d call my mother in the middle of the night to talk and cry. She never did that around me. I learned later that with several of her women friends she was much more open about her illness. I was happy to hear it. Many people need to show a slightly different face to each of us.

Finally I have mixed feelings about the value of long good-byes. In the last few yrs, both of my wife’s parents died suddenly. My father, as well as my sister, died after long lingering illnesses. Our families have talked a good deal about this and have pretty much come to consensus that quicker is better.

I’m very sorry for your friend and I can’t tell you how much I relate to your uncertainty. Medical diagnosis is not your job, friendship is. Trust your instinct. Be truthful but not necessarily explicit. Listen, listen and listen some more. Do what your heart tells you.

15

I agree with Dwinterfield-- planning for the future can make a HUGE difference in the progress of disease. People who feel they have no future die a LOT sooner. Those with a goal fight like hell to reach that goal.

See if you can find a copy of Love and Miracles by Bernie Siegel MD. Amazing book. In it, he relates the case of a woman he treated for terminal cancer. Everyone believed that she had a very short time to live, but she insisted that she was going to dance at her grandson’s wedding, nearly a year away. That’s all she could talk about. Against all odds, she did live that long and did dance at the wedding. At her next visit to the Doc, she said “Just remember, I have a LOT of other grandchildren!”. Sometimes we create our own miracles…

16

I often wonder about this site, that sometimes it is so much BS; but other times, like this thread gives me a lot of hope for all of us.

edited once:forgot the “for” in “for all of us”

17

Where you have people, you often find both. (The BS and the hope, that is.)

–James

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I think this place has a larger helping of the hope than most, though. :slight_smile:

19

Yes… and No…

My brother had all the fight, goals, positive outlook, and will… the brain tumor won anyway. The real sticky part of it was that the treatments, the only things that medicine could do, were not really expected to be effective, were probably in fact contributory to the even more rapid growth of the tumor, and made him have to be isolated from the world, his friends, the palces he wanted to see, and the actual enjoyment of several months of the few he had left. In retrospect, we felt that he would have been better off skipping the radiation and chemo treatments and simply gone on to see the people and places he longed to spend some time with. As it was, he was gone before he could do any of that.

Having the will to fight is one thing, grappling with the reality that you’d better do now what you want to get done is another… then, if you do make it through, you will have done them, and if you don’t make it, you won’t have regrets.

I’m for grappling, personally. I prefer to know the truth and work from that standpoint. Of course, not all feel that way.

Perhaps asking her what one thing she really wants to do in her life is, and going from there. If it’s throw out the first ball of the World Series, or walk on the moon… maybe a substitute, but if it’s ride the ferris wheel at Disney World, or drink champaign in Northern Italy, or see a marathon of Star Trek episodes, or visit the Grand Canyon … maybe…

Mad or not, life-threatening illness, or direct terminal diagnosis make you rethink your priorities, and though there are miracles (I’m one of them, actually) they are by far the miniscule minority. I prefer to weigh the realities and prepare for the worst, gladly accepting anything better.

20

Right-o, Kiddo. :wink:

Not able to write much here. Did’t read everything above either. My appologies. Give compassion not pity for them.

Let them talk when they want to talk. No mattter about what. Means a lot to have someone listen. They will soon learn that frineds and family are mighty hard to find when they know you’re sick. Folks get scared they will be pulled into the grave too I guess. Best thing you can do is be there for them. when they feel deserted.

The worst thing is to have someone close pretend nothing is wrong and all is fine. Face up to the facts with them. Don’t trivialize the whole thing. Fine to have hope and it is good, but don’t treat them as if nothing is going on.

Trust in the hospice. Home care or in-care service. are Good people who work with patient and family. very importants.