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
OT: How do you tell a person that she is going to die?
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MarcusR
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OT: How do you tell a person that she is going to die?
There is no such thing as tailwind -- it's either against you or you're simply having great legs!
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Redwolf
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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
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
...agus déanfaidh mé do mholadh ar an gcruit a Dhia, a Dhia liom!
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missy
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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.
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.
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Cynth
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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.
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.
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buddhu
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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.
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.
And whether the blood be highland, lowland or no.
And whether the skin be black or white as the snow.
Of kith and of kin we are one, be it right, be it wrong.
As long as our hearts beat true to the lilt of a song.
And whether the skin be black or white as the snow.
Of kith and of kin we are one, be it right, be it wrong.
As long as our hearts beat true to the lilt of a song.
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.
Stay strong.
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amar
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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.
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.
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dwinterfield
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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.
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.
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brewerpaul
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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...
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...