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Mushesgirl
Too blessed to be stressed
Member since 4/09 6691 total posts
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Anyone have a family member who is terminally ill refuse to discuss end of life issues??
UGHHHHHH venting!!!!!!!!!!
We have a family member who has refused treatment for cancer. We are totally ok with that, its their life. Their doctor is asking them what they want as far as end of life (DNR) care and the person refuses to say.
The doctor just called me to explain the situation and say that because this person is refusing to make a decision, or even have a discussion, that is the worst decision.
we understand this is of course the height of denial. who wants to face their own demise?!
Anyone go through this? Advice? I know you can't force someone to make any decisions or face reality if they choose not to, but the end result could be someone suffering
thanks for listening.
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Posted 2/20/15 9:26 AM  |
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ANewDayHasCome
Love multiplies, not divides
Member since 11/12 14481 total posts
Name:
Me
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Anyone have a family member who is terminally ill refuse to discuss end of life issues??
Do they have a healthcare proxy or selected a power of attorney? Even if they don't want to deal with it, someone will have to make those decisions. If they don't want to they should at least someone to make those decisions when the time comes.
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| Posted 2/20/15 9:33 AM |
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Mushesgirl
Too blessed to be stressed
Member since 4/09 6691 total posts
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Re: Anyone have a family member who is terminally ill refuse to discuss end of life issues??
yes he has the hcp but the problem is, that hcp was designated to give someone access to medical records when this man was hospitalized; no discussion was had about their wishes.
the hcp should act as the agent on the ill person's behalf; but if the person won't share their wishes, how can a decision be made? ughh
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| Posted 2/20/15 9:41 AM |
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ANewDayHasCome
Love multiplies, not divides
Member since 11/12 14481 total posts
Name:
Me
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Anyone have a family member who is terminally ill refuse to discuss end of life issues??
Sometimes decisions have to be made without knowing the persons end of life wishes unfortunately.
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| Posted 2/20/15 9:59 AM |
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Mushesgirl
Too blessed to be stressed
Member since 4/09 6691 total posts
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Re: Anyone have a family member who is terminally ill refuse to discuss end of life issues??
I guess that's what it's going to come down to.
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| Posted 2/20/15 10:40 AM |
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edfilippi
LIF Adult
Member since 8/12 997 total posts
Name:
Erica
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Re: Anyone have a family member who is terminally ill refuse to discuss end of life issues??
Whoever is the hcp will eventually be the one making decisions regardless if a conversation was had or not. However I feel by not wanting chemo they have accepted that death will come sooner than later. I cant imagine not wanting chemo but then being intubated if they cant breath on their own.
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| Posted 2/20/15 1:21 PM |
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Mushesgirl
Too blessed to be stressed
Member since 4/09 6691 total posts
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Re: Anyone have a family member who is terminally ill refuse to discuss end of life issues??
Posted by edfilippi
Whoever is the hcp will eventually be the one making decisions regardless if a conversation was had or not. However I feel by not wanting chemo they have accepted that death will come sooner than later. I cant imagine not wanting chemo but then being intubated if they cant breath on their own.
Yes, we can't imagine it either. it's a deep denial.
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| Posted 2/20/15 2:08 PM |
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hmm
Sweet
Member since 1/14 7993 total posts
Name:
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Anyone have a family member who is terminally ill refuse to discuss end of life issues??
a hcp is not binding and can be over ruled, all it states is someone knows what the pt wants.
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| Posted 2/20/15 3:10 PM |
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sunnyflies
LIF Adult
Member since 9/09 1757 total posts
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Anyone have a family member who is terminally ill refuse to discuss end of life issues??
This is the time for plain speaking, and that takes great courage. I have been through it, I know. I am sorry you are there.
Please tell the family member that you respect his decision not to want further treatment, but that your family and his doctor absolutely need guidance as to what care he would like as his disease progresses and that guidance is called an Advance Directive which he needs to sign. Tell him frankly that his disease will progress, that it's not going away, much as you all wish it would, so that the Directive is imperative.
Talk to him about Quality of Life. Ask what matters to him. Is pain management important? That needs to be in writing. Is being able to talk important? If so, how does he feel about being intubated - having a breathing apparatus put down his throat, which is not comfortable and prevents talking. How about being tube fed when he can no longer eat or swallow?
Explain to him that his not making a decision could end up with him hooked up to all sorts of machines to artificially prolong his life past the point of his being able to enjoy it or do anything at all, but not past the point of pain. Tell him that no family member wants to have to watch him suffer. He may end up unable to sit up, walk or talk until he dies a long slow, painful death in sterile hospital room. Be sure to explain that seeing him suffer will cause all of you a great deal of stress and suffering.
My mother signed a Do Not Resuscitiate form and when her doctors told me that the time had come, that they could do no more to help her, she was brought back to her home in an ambulance to die naturally and in peace, not hooked up to numerous tubes and beeping monitors in a hospital room. Hospice provided a hospital bed, some nursing help and all the pain medications necessary to keep her comfortable as she slowly died with dignity in her own house surrounded by her family.
You might want to read through this site:
http://familydoctor.org/familydoctor/en/healthcare-management/end-of-life-issues/advance-directives-and-do-not-resuscitate-orders.html
"People who are seriously or terminally ill are more likely to have an advance directive. For example, someone who has terminal cancer might write that she does not want to be put on a respirator if she stops breathing. This action can reduce her suffering, increase her peace of mind and increase her control over her death."
Message edited 2/20/2015 5:03:16 PM.
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| Posted 2/20/15 5:00 PM |
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Mushesgirl
Too blessed to be stressed
Member since 4/09 6691 total posts
Name:
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Re: Anyone have a family member who is terminally ill refuse to discuss end of life issues??
Posted by sunnyflies
This is the time for plain speaking, and that takes great courage. I have been through it, I know. I am sorry you are there.
Please tell the family member that you respect his decision not to want further treatment, but that your family and his doctor absolutely need guidance as to what care he would like as his disease progresses and that guidance is called an Advance Directive which he needs to sign. Tell him frankly that his disease will progress, that it's not going away, much as you all wish it would, so that the Directive is imperative.
Talk to him about Quality of Life. Ask what matters to him. Is pain management important? That needs to be in writing. Is being able to talk important? If so, how does he feel about being intubated - having a breathing apparatus put down his throat, which is not comfortable and prevents talking. How about being tube fed when he can no longer eat or swallow?
Explain to him that his not making a decision could end up with him hooked up to all sorts of machines to artificially prolong his life past the point of his being able to enjoy it or do anything at all, but not past the point of pain. Tell him that no family member wants to have to watch him suffer. He may end up unable to sit up, walk or talk until he dies a long slow, painful death in sterile hospital room. Be sure to explain that seeing him suffer will cause all of you a great deal of stress and suffering.
My mother signed a Do Not Resuscitiate form and when her doctors told me that the time had come, that they could do no more to help her, she was brought back to her home in an ambulance to die naturally and in peace, not hooked up to numerous tubes and beeping monitors in a hospital room. Hospice provided a hospital bed, some nursing help and all the pain medications necessary to keep her comfortable as she slowly died with dignity in her own house surrounded by her family.
You might want to read through this site:
http://familydoctor.org/familydoctor/en/healthcare-management/end-of-life-issues/advance-directives-and-do-not-resuscitate-orders.html
"People who are seriously or terminally ill are more likely to have an advance directive. For example, someone who has terminal cancer might write that she does not want to be put on a respirator if she stops breathing. This action can reduce her suffering, increase her peace of mind and increase her control over her death."
This is very helpful, much appreciated. I hope we can get through to him somehow, thank you for your kind thoughts and sorry for the loss of your mom
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| Posted 2/20/15 6:55 PM |
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hmm
Sweet
Member since 1/14 7993 total posts
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Anyone have a family member who is terminally ill refuse to discuss end of life issues??
my advice would be to speak to the social worker (if in hospital) or palliative care, hospice SW or RN.
most people on some level know the end is near. Most families are not open to speaking about death and dying which makes it hard for most people to bring the topic up.
many pt in the hospital hate when I would bring the topic up
sorry you and your family are going through this.
Message edited 2/20/2015 7:13:19 PM.
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| Posted 2/20/15 7:12 PM |
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sunnyflies
LIF Adult
Member since 9/09 1757 total posts
Name:
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Anyone have a family member who is terminally ill refuse to discuss end of life issues??
Mushesgirl :
You might want to read this beautifully written, thoughtful but not sad, OP-Ed from the New York Times yesterday about facing terminal cancer. It was written by a renown professor of neurology after he learned he has just a few more months to live. It might be helpful for your relative. I am keeping the article and will be asking my family to read it.
I hope I will have this man's grace and common sense when my time comes. He writes, "It is up to me now to choose how to live out the months that remain to me."
http://www.nytimes.com/2015/02/19/opinion/oliver-sacks-on-learning-he-has-terminal-cancer.html?_r=0
Sorry, I don't know how to make it a hyperlink on this forum.
(((Hugs))) to you in this difficult time for your family.
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| Posted 2/20/15 8:04 PM |
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Sparrow
LIF Adult
Member since 11/10 6826 total posts
Name:
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Re: Anyone have a family member who is terminally ill refuse to discuss end of life issues??
Message edited 2/20/2015 8:40:24 PM.
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| Posted 2/20/15 8:25 PM |
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Mushesgirl
Too blessed to be stressed
Member since 4/09 6691 total posts
Name:
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Re: Anyone have a family member who is terminally ill refuse to discuss end of life issues??
Posted by hmm
my advice would be to speak to the social worker (if in hospital) or palliative care, hospice SW or RN.
most people on some level know the end is near. Most families are not open to speaking about death and dying which makes it hard for most people to bring the topic up.
many pt in the hospital hate when I would bring the topic up
sorry you and your family are going through this.
thank you. the doctor offered palliative to him, he declined.
i've calmed down quite a bit about this since i posted it, realizing its his life, if he wants to shut us all down about making decisions then so be it.
he also fell last weekend, no injury so i know things will be coming to a head sooner rather than later.
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| Posted 2/26/15 12:26 PM |
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Mushesgirl
Too blessed to be stressed
Member since 4/09 6691 total posts
Name:
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Re: Anyone have a family member who is terminally ill refuse to discuss end of life issues??
Posted by sunnyflies
Mushesgirl :
You might want to read this beautifully written, thoughtful but not sad, OP-Ed from the New York Times yesterday about facing terminal cancer. It was written by a renown professor of neurology after he learned he has just a few more months to live. It might be helpful for your relative. I am keeping the article and will be asking my family to read it.
I hope I will have this man's grace and common sense when my time comes. He writes, "It is up to me now to choose how to live out the months that remain to me."
http://www.nytimes.com/2015/02/19/opinion/oliver-sacks-on-learning-he-has-terminal-cancer.html?_r=0
Sorry, I don't know how to make it a hyperlink on this forum.
(((Hugs))) to you in this difficult time for your family.
thank you. i found the piece deep and thought provoking. way too macabre for my family member who will wave it away. but it was a great read.
thanks for the kind words. i've taken a more hands off approach now to him. and in the grand scheme, we have no control over anyone or thing other than ourselves.
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| Posted 2/26/15 12:32 PM |
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ISpoilHim
I think I got this
Member since 11/10 1523 total posts
Name:
K
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Anyone have a family member who is terminally ill refuse to discuss end of life issues??
I was my Mom's HCP and POA. But she did not want to talk about her wishes. I would speak to hospital social workers, dr's, etc and then have them approach mom. That was how we were always able to get a decision from her and know what she wanted. Since I had already spoken to those involved though, we had already come up with a game plan and they knew what direction I wanted to go. But she still felt in control and was made to believe that she was making decisions.
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| Posted 2/26/15 12:51 PM |
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Mushesgirl
Too blessed to be stressed
Member since 4/09 6691 total posts
Name:
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Re: Anyone have a family member who is terminally ill refuse to discuss end of life issues??
Posted by ISpoilHim
I was my Mom's HCP and POA. But she did not want to talk about her wishes. I would speak to hospital social workers, dr's, etc and then have them approach mom. That was how we were always able to get a decision from her and know what she wanted. Since I had already spoken to those involved though, we had already come up with a game plan and they knew what direction I wanted to go. But she still felt in control and was made to believe that she was making decisions.
The dr reached out to us after trying to have the conversation without success. I agree with having the person feel in control; but this person is not reachable.
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| Posted 2/26/15 1:13 PM |
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Xelindrya
Mommy's little YouTube Star!
Member since 8/05 14470 total posts
Name:
Veronica
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Re: Anyone have a family member who is terminally ill refuse to discuss end of life issues??
Posted by sunnyflies
This is the time for plain speaking, and that takes great courage. I have been through it, I know. I am sorry you are there.
Please tell the family member that you respect his decision not to want further treatment, but that your family and his doctor absolutely need guidance as to what care he would like as his disease progresses and that guidance is called an Advance Directive which he needs to sign. Tell him frankly that his disease will progress, that it's not going away, much as you all wish it would, so that the Directive is imperative.
Talk to him about Quality of Life. Ask what matters to him. Is pain management important? That needs to be in writing. Is being able to talk important? If so, how does he feel about being intubated - having a breathing apparatus put down his throat, which is not comfortable and prevents talking. How about being tube fed when he can no longer eat or swallow?
Explain to him that his not making a decision could end up with him hooked up to all sorts of machines to artificially prolong his life past the point of his being able to enjoy it or do anything at all, but not past the point of pain. Tell him that no family member wants to have to watch him suffer. He may end up unable to sit up, walk or talk until he dies a long slow, painful death in sterile hospital room. Be sure to explain that seeing him suffer will cause all of you a great deal of stress and suffering.
My mother signed a Do Not Resuscitiate form and when her doctors told me that the time had come, that they could do no more to help her, she was brought back to her home in an ambulance to die naturally and in peace, not hooked up to numerous tubes and beeping monitors in a hospital room. Hospice provided a hospital bed, some nursing help and all the pain medications necessary to keep her comfortable as she slowly died with dignity in her own house surrounded by her family.
You might want to read through this site:
http://familydoctor.org/familydoctor/en/healthcare-management/end-of-life-issues/advance-directives-and-do-not-resuscitate-orders.html
"People who are seriously or terminally ill are more likely to have an advance directive. For example, someone who has terminal cancer might write that she does not want to be put on a respirator if she stops breathing. This action can reduce her suffering, increase her peace of mind and increase her control over her death."
all this.. Dad knew he was dying and gave up on life. Altho he wanted a DNR, it was never even an option since CPR would only kill him faster.
He asked me to let him die. More or less he asked me to kill him quickly as I could legally.
He didn't want to talk about repercussions of his death tho. He thought it would all be ok, just let me die.
I am his daughter but my step mother trumped me via next of kin line. I was able to still make some choices and maneuver her into agreeing with me. That was painful. Bowing down to her for the benefit of my father. Listening to her speak of him as if she was his best friend and he was her lover of all time.. I wanted to vomit. He loathed her and she abused him. Her long time lover/boyfriend finally dumped her about 2yrs before. Still I sucked it up and Dad got his death.
She screwed me afterwards, but that's another story.
My father made it clear all his life he didn't want to suffer. He didn't want to be saved if it was not worth saving. We used to think it was morbid then we just got used to the conversations. It made my life have direction when the time came. I knew what I had to fight for after he lost his ability to communicate.
You need to be blunt. How do you want to die?
My Dad tried to die at home (apt) but his condition was horrible and I had to force him back to the hospital where he deteriorated until he was moved to a Hospice for those last few days. Still better to die in a clean bed with care providers and family visits.... than in his bed at home covered in mess and a idiot woman would doesn't care if you die fast or slow as your only care provider.
Even before my Dad's death my hubby and I have talked about what I want. He's still confused on what he wants other than to say he trusts me.
Sorry you are going through this.
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| Posted 2/26/15 1:33 PM |
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Mushesgirl
Too blessed to be stressed
Member since 4/09 6691 total posts
Name:
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Re: Anyone have a family member who is terminally ill refuse to discuss end of life issues??
Posted by Xelindrya
Posted by sunnyflies
This is the time for plain speaking, and that takes great courage. I have been through it, I know. I am sorry you are there.
Please tell the family member that you respect his decision not to want further treatment, but that your family and his doctor absolutely need guidance as to what care he would like as his disease progresses and that guidance is called an Advance Directive which he needs to sign. Tell him frankly that his disease will progress, that it's not going away, much as you all wish it would, so that the Directive is imperative.
Talk to him about Quality of Life. Ask what matters to him. Is pain management important? That needs to be in writing. Is being able to talk important? If so, how does he feel about being intubated - having a breathing apparatus put down his throat, which is not comfortable and prevents talking. How about being tube fed when he can no longer eat or swallow?
Explain to him that his not making a decision could end up with him hooked up to all sorts of machines to artificially prolong his life past the point of his being able to enjoy it or do anything at all, but not past the point of pain. Tell him that no family member wants to have to watch him suffer. He may end up unable to sit up, walk or talk until he dies a long slow, painful death in sterile hospital room. Be sure to explain that seeing him suffer will cause all of you a great deal of stress and suffering.
My mother signed a Do Not Resuscitiate form and when her doctors told me that the time had come, that they could do no more to help her, she was brought back to her home in an ambulance to die naturally and in peace, not hooked up to numerous tubes and beeping monitors in a hospital room. Hospice provided a hospital bed, some nursing help and all the pain medications necessary to keep her comfortable as she slowly died with dignity in her own house surrounded by her family.
You might want to read through this site:
http://familydoctor.org/familydoctor/en/healthcare-management/end-of-life-issues/advance-directives-and-do-not-resuscitate-orders.html
"People who are seriously or terminally ill are more likely to have an advance directive. For example, someone who has terminal cancer might write that she does not want to be put on a respirator if she stops breathing. This action can reduce her suffering, increase her peace of mind and increase her control over her death."
all this.. Dad knew he was dying and gave up on life. Altho he wanted a DNR, it was never even an option since CPR would only kill him faster.
He asked me to let him die. More or less he asked me to kill him quickly as I could legally.
He didn't want to talk about repercussions of his death tho. He thought it would all be ok, just let me die.
I am his daughter but my step mother trumped me via next of kin line. I was able to still make some choices and maneuver her into agreeing with me. That was painful. Bowing down to her for the benefit of my father. Listening to her speak of him as if she was his best friend and he was her lover of all time.. I wanted to vomit. He loathed her and she abused him. Her long time lover/boyfriend finally dumped her about 2yrs before. Still I sucked it up and Dad got his death.
She screwed me afterwards, but that's another story.
My father made it clear all his life he didn't want to suffer. He didn't want to be saved if it was not worth saving. We used to think it was morbid then we just got used to the conversations. It made my life have direction when the time came. I knew what I had to fight for after he lost his ability to communicate.
You need to be blunt. How do you want to die?
My Dad tried to die at home (apt) but his condition was horrible and I had to force him back to the hospital where he deteriorated until he was moved to a Hospice for those last few days. Still better to die in a clean bed with care providers and family visits.... than in his bed at home covered in mess and a idiot woman would doesn't care if you die fast or slow as your only care provider.
Even before my Dad's death my hubby and I have talked about what I want. He's still confused on what he wants other than to say he trusts me.
Sorry you are going through this.
this is so horrible, so sorry you were put through that. I mean, it's bad enough when you're dealing with the illness, to have all that drama on top of it is just awful.
We are dealing with an individual with many, many psychological issues, he is not mentally ill, just many personality disorder/ocd/depression issues, that he will shut a conversation down if he doesn't want to participate, kinda like a 4 year old. Insert banging-head-on-wall emoticon
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| Posted 2/27/15 11:02 AM |
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