Do I tell her shes going to die soon?

Hello all, I’m new at this so please bear with me. I need some moral advice.
My Mum was diagnosed with BC 18 months ago. She has had a mascetomy, chemo, radiotherapy, another lot of chemo but unfortunately has now been told she has secondary cancer of the brain and lungs as well as the cancer still thriving in her chest wall. After her last brain scan the Consultant phoned me and told me that Mum had severe secondary Brain cancer and that she would be referrred for more radiotherapy. she also told me however, that without this Mum had weeks to live. Even the next round of chemo they are willing to give her will only buy her an extra couple of months on earth! The consultant asked me how much I wanted her to tell Mum at this point. After much thought I asked her to keep the fact from Mum that her cancer isn’t curable. We are due back at the consultants on the 23rd June and I know that Mum needs to know the truth about her life expectancy. I suppose what I’m really asking is for any views on whether I should tell her before the appointment what I already know. Part of me doesn’t want her to know at the next appointment, but as they are going to be offering her chemo, I want to be able for her to make an informed decision as to whether to leave this earth feeling soggy and as chemo can make you feel, or whether she just wants to feel as well as she ccan for as long as she can before she deteriorates into nothing. I already feel like such a liar and a fraud, but I just wanted Mum to be able to enjoy some of her time without the fear of dying looming over her head. Has anyone else had the same sort of dilemmas? All I want to do is protect my Mum but I don’t know the best way to do it. She is only 61 years old and has 4 new grandchildren under the age of 3. Please help me do what is best for her?

I think this is a hard one, but I personally would be very angry if things were being held back from me. Its entirely upto you, but if it was me as I am an adult I would want to be informed of what was going on so I could “set my house in order”. I would feel very cheated and angry that I had been treated like a child. I am sure others will have there own opinions, but I would always want to be told, whether it be bad or good news.

Hi harleypickle,

It is indeed a moral dilemma and I suspect in her heart of hearts your mum knows the score on this. Sometimes the silence is like the Elephant in the Room - everyone knows what is going on and no-one allows the other to mention it. This cannot be easy for you but may I suggest perhaps that you ask for the help of a macmillan nurse if your mum does not already have one. The help that they can offer to you all at this time would, I am sure, make a huge difference. Everyone with secondary cancer knows it is not curable and I suspect the word you mean here is that she is at the terminal stage. It would be so good if you were able to talk to your mum and find out how she wants to handle this and I think a mac nurse will help you to do just that.

love and thinking of you,
Dawn

Harleypickle
I am so sorry to read of the sad situation you are in.
I am 59 and also have grandchildren.
After my dx I asked my daughter to promise to tell me if she thought or was told that my life was ending. I would not want to slip away without having the opportunity to speak and share with my wonderful family, neither would I want them to keep such a burden to themselves.
Quantity versus quality of life is such a difficult decision. I personally, would want time to think and talk about this before meeting with a proffesional. I find appointments surreal and cannot relate to information .no matter how kind and understanding my doctors are…
I would imagine that your dear mum already has insight into her future and would rather have confirmatiom from her loved one than an outsider.

love Margaret

Hi

To be honest I find this post really suprising as I thought doctors didnt do this anymore - ie that they talked to the patient directly and not to the relatives, I can’t imagine my doctors phoning my relatives first. Your mum is 61 and she presumably is a capable adult? In the end its up to her, but i think that Dawns suggestion of involving the mac nurse is quite a good one,.

love
Cathy

I would repeat what Cathy has said. Ethically, unless the patient is not capable of understanding or whose mental health is so fragile, they have every right to know. Maybe the doctors are concerned in the way the news is delivered which is understandable. Personally, I would always wish to know about my mortality so I could put my affairs in order. I think consulting a Macmillan nurse or at least a Breast Care nurse is the best way forward so they can give you advice on how to tackle this dreadfully difficult and sad situation.

Good luck

Cathy
x

I am 64 and a grandmother too.Although I am an ‘ostrich’ about some things I feel it is my right to know something as fundamental as this.I’m not sure I’d want one of my kids to tell me though.I think it would be good if you could involve Macmillan or bc nurse before your mum sees the consultant.I was in your position with my own mum who had always said she didnt want to know.When I went back to her bedside after the consultant had told me she had only a few days she asked me;"Am I dying then?"I just said,"Not today sweetheart."She was ok with that and slipped into a coma the next day and died without regaining consciousness.I think she knew because her last words were to her brother and she said,"Its a bu***r Robbie!"She would have hated the idea that her last coherent sentence had a swear word in it.She hated bad language!

Hi Harleypickle,

Sorry to hear about your mum.
its a very hard time for your mum and you.
My mum died last year but was told by the onc she had terminal cancer.
My mum never talked about death, she still wanted to protect her children and too be honest I couldn’t face talking about it
My Mum was 65 when she died but i think your mum has to know so she can make the right decision for herself.
My mum could talk to the nurses about drying but not me and maybe your mum is also protecting you and properly knows herself .
Take care

I have worked in a hospice and patients have often described feeling more peaceful when their poor prognosis is given to them. Jxx

Harleypickle - so very sad to hear about your Mum. I suspect she may have a gut feeling that her time on Earth is limited but maybe she doesn’t want to talk to you or the family about it as she does not want to upset you all. I agree with the comments that a Macmillan nurse or her oncologist should let her know her prognosis unless, of course, she has asked not to be told. If she is religious then maybe her priest could be involved. Am thinking and praying for you both.

First and foremost I am so sorry to hear that your mother’s cancer is now classed as terminal. I am also sorry that you are in the position you are in and having to make the decision whether to tell her what you know already. Please do not go on a guilt trip about this - you say you feel like a liar and a fraud, the fact that you have this knowledge ahead of your mother does not make you a liar or a fraud, it makes you a very burdened person.

You mention that your Mother has 4 grandchildren under the age of 3 so this suggests that you have brothers or sisters - if so would it be an idea to share the details with them and gain their support and opinions on when and how much to tell your mum? As others have said the macmillan nurses or bc nurses would be able to help as well.

My friend’s husband died recently 10 weeks after being told he had terminal cancer - being told meant that he could put his house in order (the main thing being it allowed him to re-arranging his wedding which was booked for Sept 08 - they got married 5 weeks after he got the news). I think, if it were me, I would want to know about it ahead of the appointment - as you say if your mum knows then she will be better prepared for making an informed decision regarding the chemo and other treatments she may be offered.

Love and best wishes to you and your family.

I am also astounded that a doctor has been talking to relatives rather than to the patient…presuming your mum is a competent conscious adult.

I am about the same age as your mum…59…and would be very angry indeed if my partner ‘knew’ something about my cancer before I did.

But everyone is different and it sounds as though your mum may be someone who doesn’t want to know or doesn’t want to talk about her likely short life. At some level your mum will know she is dying and may be trying to protect you. One problem with your mum ‘not knowing’ or not wanting to acknowledge her dying is that it makes it very hard for you and others who love her to say goodbye. There are few privileges in a slow death from cancer, but one thing about knowing you are going to die soon, rather than dying suddenly in an accident or say from a heart attack is that it opens up possibilities for dying people and those they love to really demonstrate their love and care for each other…and to resolve unfinished business…what some doctors call: ‘putting yuur affairs in order.’

You knwo your mum best…but do you want to continue feeling a fraud and a liar?

best wishes

Jane

Hi…you know your Mum best of all…I would go by what you feel is right.
I’m in my 40’s and know I will die of breast cancer but can also relate to your dilema as my Mum was diagnosed with advanced ovarian cancer just a few weeks ago. My Mum knew it was a terminal diagnosis but was so relieved she was going to start chemo. Unfortunately she died a few days later, before any treatment. I was with her when she died, along with my brother and sister. We didn’t tell Mum she was dying…and we have never regretted our decision…we all knew Mum would have been so afraid, she was hoping for a good result, a bit more time from having chemo.
My Very Best Wishes to you.

personally i think you should tell your mum to give her time to put her affairs in order and to have the conversations that she would like to have, i know if i had short life expectancy i would want to be told. You know your mum best, but if i had to keep the same secret from my mum it would break my heart, and there are things i would want to say to my mum,

big hugs to you and your mum
Anna x

harely-
I am really sorry that you are in this position. I agree with the others who wondered why the doctor was telling the family rather than the patient. I am 61; I have 3 grandchildren, two sons, two stepsons and 1 stepdaughter. My parents have died after having stretched out, terminal illnesses. And I can tell you that almost certainly your Mother knows instinctively that she is dying.

I would hope that the last thing you give to your Mother would be the gift of time. In the time she has remaining, she can prepare herself, prepare her will or just write a simple log and put her life on this earth in order. Annamarie is right. She would be able to wrap up those loose ends that matter to her. My Mother did this…she contacted people she hadn’t talked to in years. It really helped her. t sounds cold. But it is not. I say this with much regret and many hugs to you…it is a very hard road.

As others have said, it also may be that she is trying to protect you… So, my advice would be to be honest with her. Everyone’s family is different…and the way you all interact together…but if it is helpful, perhaps you can either appoint one person that she trusts (probably you) or have the entire family be with her. I would prefer to hear it from my husband; then the son I am closest to.

I am from US so don’t know much about the nurses there; but I can see how that would help if you talked with her first about the emotional side and then had the nurse or doctor come in to tell her the details. Play it by ear and do what you think is right. But I hope you don’t put that albatross round your neck that you are responsible and held it back from you Mother.

My prayers are with you dear.

Emily
xxx

Hi Harleypickle,

This is a nightmare position for you and your family and it’s very difficult to know the “best” thing to do … perhaps thinking of it as the “least worst” might help

one thing for sure is that you are not going to feel good about whatever you do … nothing to do with you … just the cr*ppy situation … but remember you can only do your best … you can’t make this type of situation better

I can tell you of experiences I have had - which will put across the other point of view to those expressed here …

My mother-in-law died of lung cancer (having beaten breast cancer - it was another primary) over 15 years ago. She had a fabulous christmas as it was pre-dx. Then she was dx and the family was told she had a year. The next week we were told she had 3 months. The next week a month … and the next week she went.

She had plenty of opportunities to ask questions but she didn’t want to know. That was what she preferred - not to be told. I have to say as well that before going into hospital for treatment she had good days and bad days. Once she was in there there were no more good ones. For her the best thing was to find out very late she was ill and to have had a normal life almost to the end. I think it may have even been better if they hadn’t dx and she had just dropped dead one day - sorry to say that.

The second example is a friend’s husband - he has had a battle against throat cancer for a long time. On the last visit he was told by the doctor that is he is going to die - but we don’t know when. Could be a month, could be a year. It has destroyed him completely and he has just sunk into depression and is just waiting to die - he has no hope. The effect that this knowledge is having on him has made an awful situation even worse - if that’s possible.

In my opinion you shouldn’t tell her. In fact, in my opinion the consultant shouldn’t necessarily tell her - he should give her a lot of oportunities to ask and if she doesn’t take them then I think he shoudn’t force it on her.

Some people want to know and others don’t. Its a very difficult call - made worse by the fact that if you make a mistake and tell someone then you can’t “undo” it. Having said that if you get asked at the end if you knew then you can’t turn the clock back either!

I am very sorry that you have been put in this position - it must be incredibly awful for you.

I still think that the consultant needs to present some key facts and see whether she bites and asks the questions. If she doesn’t want to hear the words then I don’t hink she should be made to - what’s the point?

I know I am going to annoy a lot of people but I can’t help seeing it like this and so I have to state what I feel. I personally would want to know - but I know my husbnd wouldn’t - in fact he definitely even would not want ot know if I was going to die - I’d have to keep it from him! We are all different.

Just do your best and don’t take on the resposibility of the problem - you are just trying to do your best in a great big emotional mess.

We are all thinking of you.
lots of love and a big hug
FB xxx

no Fizz

You certainly arent annoying me - its up to the doctor to have the dialogue with the patient. The doctor should present the basic facts - eg its not curable but we can help/cant help whatever and then as you say its up to the patient whether they bite or not - pick up and ask the detailed questions. There are certain things I havent asked and dont particularly want to know - but thats up to me - not my husband or my parents,

cathy

This is a very harrowing situation. However, I agree that the bottom line lies with the doctor. Their communication and people skills should be good enought to enable them to perceive and be sensitive to the patient’s information needs. It may be that they need to work with the family to enable them to understand more about the patient and how much they want to know and at what level it should be delivered. However, the doctor needs to ensure that he/she has provided adequate information so the patient can make an informed choice about their treatment, whatever that may be. I hope the doctor concerned is not passing the buck to the family when really it is their call with an adult.

Do you know whether your mum is under a palliative care team? We have such a team here with a consultant in palliative care as well as palliative care nurses who talks not only to the patient but also supports the family.

Hi all … my mum died of ov cancer was diagnosed on 16 Sept 05 she died 8 days later she was given a month …she had a lovely macmillan nurse who told her she was dying …she mentioned it once to us and never again after that ,she was a shrewd lady and think she knew deep down all along … I think she had a right to know
it made those last days easier for us all xxxxxxxx
maz x