Getting over the "hospice" hurdle?

cookiegal
cookiegal Member Posts: 3,296
edited June 2014 in Palliative Therapy/Hospice Care

I hope it's ok for me to post this. My MIL has stage 4 lung cancer and has no interest in treatment. Docs say about 6 months left.

She wants nothing to do with hospice at all! Won't even discuss it.

I fear this means her life in going to end in an ICU with a lot of treatment, she does not want to sign a DNR. 

Ironically my own mother is strong believer in euthanasia, let alone hospice, so MIL's beliefs are really hard for me to understand.

I fear she is on a path to a really uncomfortable situation.

I feel like if she understood how much help they would be, and how much comfort they could offer, she would feel differently.

I realize everyone has a right to their own choices.

I read all the time on BCO about what a huge difference hospice makes.

Maybe she just needs to sort it out in her own time.

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Comments

  • kira66715
    kira66715 Member Posts: 4,681
    edited July 2012

    Cookie, working in rad onc, I found this scenario all too common, especially with older people, for some reason. Give her time to adjust and for some people, hospice means giving up all hope and they just can't face that.

    My FIL literally broke his neck the first day in assisted living and lost his gag reflex from the neurosurgery, and spent the next 18 months hospitalized. He was never a DNR--he wanted to get back to my very demented MIL.

    It's just so hard, and all we can do is advise and support our loved ones.

    Hopefully her health care providers will support and inform her decision making.

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  • itsjustme10
    itsjustme10 Member Posts: 796
    edited July 2012

    I can understand not wanting hospice, and wanting things on her own terms, but at some point, you might be able to talk to her about a health care proxy, and a living will.  When she sees the options available under a living will, she may agree to certain things - such as not wanting to be intubated, not wanting artificial nutrition, not wanting her life artifically prolonged etc.  That doesn't necessarily equate to hospice, and it could, if she reaches a point where she is no longer capable of making her own decisions, make things easier on whomever holds the health care proxy, as then you know you're carrying out her wishes.  She has earned the right for it to be her way.

    None of this is easy.

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  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited July 2012

    Cookiegal, I am sorry to hear about your MIL.  My Mom died of stage IV lung cancer last August.  Time from diagnosis to death was 3 months.  She was very much pro DNR and pretty much signed up with hospice right after she had palliative radiation (they won't let you have any treatment or ct/pet scans while in hospice).  

    Is she having any treatment at all?  It might be that, unfortunately, after she has some treatment she might begin to see the benifits to hospice care.  Is she ameniable to social worker or therapy at all?  It sounds like she just needs to come to terms with her diagnosis?

    My heart goes out to you, your husband, and your family. 

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2012

    Thanks for all the advice.

    She declined treatment sugery, chemo, rads when it was early stage 2 years ago,(and never told anyone), and is now that it has spread she still wants no treatment. 

    It's hard for me to put it all together why if she declined all treatment she wants no DNR and no hospice. 

    It'sjustme10 thank you for that suggestion!

    It's a long story but, I sure hope there is a social worker involved.
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  • bedo
    bedo Member Posts: 1,866
    edited July 2012

    I think that I would suggest a Palliative Care consult.  Palliative care deals with symptoms that are causing a person discomfort, such as pain, nausea, anorexia, dyspnea itching, etc. and is not limited to people with a disease trajectory of 6 months or so. A lot of people are afraid of Hospice and have the idea that once you are on it they put you in a bed and give you morphine and you are dead in 3 days.  (Actually studies have shown that people live longer on Hospice because of the care they receive.  They also usually have grief counselors, clergy, social workers, RNs CNAs, volunteers and are available 24/7 so that if someone takes a turn for the worse, they will come at 2 am on a Saturday and stay with the family in order to support them should the person pass away. They also continue to stay in touch for 13 months after a death in order to support the family after the one year anniversary which is difficult for some. Some people are on Hospice for 1 1/2 years or so, some people come off Hospice.)  Palliative care provides NPs and MDs who care for symptoms as a consult service, like an neurologist or other specialist and don't come attached with other people.  They can come out once or more often to make recommendations to the regular MD or oncologist based on the symptom that is bothering the patient, and usually have a holistic approach. Often people who are afraid of Hospice will accept Palliative care if asked, "OK, then would you like a palliative care consult to help your Mom with pain?" The answer is usually "yes" Once they have trust in the provider, and are able to talk to someone that they see and know as a person they usually transition more easily. If they still don't want it, that is their choice,  at least they have someone who can make recommendations regarding symptoms. I am wishing you the best

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited July 2012

    I haven't worked hospice for 20 years. One thing I remember is some patients are afraid of the "counselling" aspects. Don't want to talk to a social worker even. Sometimes we could only involve a social worker if the patient saw some immediate benefit for themself or family. When I was told it was standard to have the social worker talk to all patients recieving RADs, I wasn't to thrilled. I didn't think they had any useful information to offer me.

    Your mom can change her mind at any time.

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  • pejkug3
    pejkug3 Member Posts: 902
    edited July 2012
    My MIL died on June 14th - Lung cancer.  She lived 14 months from her initial diagnosis, Stage IV from the start.

    MIL was a DNR but making that move to Hospice was rough for her.  I think she felt like she was giving up.  MIL was 57, FIL still works FT and my four kids and I went to help her for the month before she entered hospice.  She was officially a hospice patient as of 2pm on June 13.  She was gone the next morning.  Death had never looked that way to me but she was lucid and alert until 12 hours before her death.

    I think hospice was a really emotional decision for everyone.  She asked my husband if she was dying...how do you answer that?  So sad and difficult.

    You're in a rough spot.  Good Luck.  I agree with a previous postor that suggested palliative care.  We spoke with a rep that compared the two services and gave us all the reasons that hospice was a better choice for MIL.  Some of that boiled down to $ and that really sparked MIL's interest.  ;)
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  • Chickadee
    Chickadee Member Posts: 4,467
    edited July 2012

    Regardless of what we want for someone and no matter how rational it is to us, there comes a point where you can only back off and watch it happen.



    Cookie gal, your MIL may be someone who must be in control. She may view all attempts to offer help as others trying to control events and dig her heals in even deeper. Loss of control may cause her very high levels of anxiety. Guessing, as of course I do not know her.



    I think all you can do is state what you can offer in the way of help and should she shut you down, explain that you will need to go support your husband and children now as they will need all your love and attention to prepare for the loss of mom and grand mom.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2012

    Thanks for all the suggestions. It makes me feel less alone.

    I spoke to my husband about the directive.... she wants to be intibated, ventilated, feeding tubed, you name it...she does not want the plug pulled no matter what.

    It's so contrary to my mother and how I was raised I am having a hard time wrapping my head around it. 

    Chickadee: thank you for the sweet message, we actually don't have kids.

    Part of the problem is we are both only children of divorced parents so there is no other support when our parents have issues, though on her side there is an uncle and her very elderly mother.

    On a happy note my mom got her power back on...phew! I was getting worried there. 

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited July 2012

    I am going to play amateur psychologist now, but with her declining treatment when she had a chance to be cured, it seems to me that she has been, and is, in total denial about her situation. Hospice in a wonderful program, but to get involved you have to be ready and willing to accept that your time on earth is soon ending....and she is not at all there. Does she have a will? Does she have anyone down as the power-of-attorney and/or medical power-of-attorney ? If she doesn't, would she be willing to appoint one? (A conversation that should take place with no mention of her health issues!). I don't know what the laws are everywhere, but in some states, when the patient can no longer make choices for themselves, the person with power-of- attorney can, in some circumstances, supersede prior medical directives. Very hard, uncomfortable stuff. DH and I are on the same page about end-of-life issues. My parents were smart enough to appoint me as their medical power-of-attorney, but I have a brother who has stated that he would want to be kept alive even if he could only wiggle one finger. I told his wife that she should NOT discuss those issues with him, because if she knows his views she might feel obligated to follow them!

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2012

    she did allow my husband to be power of attorney.

    There was a wonderful article I posted here aways back about end of life, and there was an anecdote with someone who's father said if I can eat chocolate ice cream and watch football I want to be alive, otherwise not. Fair enough. 

    Everyone is entitled to their own terms. 

    But I just can't wrap my head around this one. 

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2012

    http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=1

    This article changed how I see everything! 

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited July 2012

    Very sad and good. It is a national conversation we need to have, without all the hysteria of the 'death panels' etc. My mom was in the end stages of a lung dieases when she fell and broke her hip. We pretty much had to fight against the medical system to keep her from getting medical inventions which would have only prolonged her death. My dad had to sign a DNR when he entered a nursing home, so thank goodness, that is covered with him. DH and I have medical directives, which help, but don't guarantee, that your wishes will be respected.

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  • itsjustme10
    itsjustme10 Member Posts: 796
    edited July 2012

    Cookiegal, I'm sorry you're going through this.  It almost sounds like she's scared you all are trying to kill her, so she's dug her heels in about everything.  I know that makes no sense, but that's what it sounds like - people change as they age, get paranoid about things.  My mom had an elderly aunt who she handled affairs for, and at one point the woman accused her of taking her money to buy me a car (um, no, Dad was subsidizing her care, BTW).  My dad was furious, so my mom told her we were dropping off her papers and she could take care of everything herself.  She changed her attitude really quickly after that.  It's weird how they get these ideas in their heads from nowhere, but it happens quite frequently.

    Agree with whatever your MIL wants - have your husband tell her that whatever her wishes are, you will make sure that happens for her.  Reassure her that it is her life, and she still has control over it.  That she shouldn't worry for 1 second that her wishes would not be carried out  You never know, she might feel like she's backed herself into a corner right now, and maybe she will tell a nurse or someone that she doesn't want certain treatment as time goes on.  Maybe she would even tell you guys to change her directives.  You can't forced her to do something, or not do something, though...when she's ready she will know...

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2012

    Thanks for all the suggestions

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited October 2012

    Just an update, MIL did consent to hospice care, I guess they told her she could get more meds that way.

    She is actually doing pretty well.

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