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What do I say. I have been asking for Palliative Care, but we have an HMO and all they gave him a month ago was a nurse for 30 minutes a week. If he stops all meds and cancer treatment I will demand HOSPICE, I can't bear to see him suffer anymore.


As of yesterday, He's not able to eat, dress himself or walk without assistance. 24/7 Oxygen. His heart rate has averaged 140-150 pulse since Friday night. He was given Chemo and Immunotherapy for Stg 4 Adeno Carcinoma which has made the heart condition worse.


The KAISER Oncologist said his cancer is treatable, but not curable?? WTH!


Any wisdom you can share I would be so grateful for. I have his AD and his will, but I've been up all night, it's 4AM trying to figure out what I should say or do now that he has refused to be hospitalized.


Is he a danger to himself now? I don't have any healthcare proxy or power of attorney. We have a living trust with our home and again his Will, but unless he has a heart attack or stroke, there is no DNR.


What words shall I say to him. I don't want to say the wrong thing. We've been together since I was 24, and I am 61.


And YES everyone I know I need to take care of 'me' this is why I am reaching out again. I am praying that I do the right thing for all concerned.


I'm devastated. He left the hospital against medical advice and refused care and they told me they were going to notify his Doctors last night.


Thanks everyone. I can't believe I found this forum. I have read and read so much of your shares. It's been a god send. Truly.

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I should demand hospice. They will ensure that he is made comfortable, and not only that but it is also part of their role to enhance his quality of life as far as possible.

So then:

EITHER he will receive the best possible comfort care while exercising his right to refuse treatment for his cancer;

OR an improvement in the care he's receiving will help restore his motivation to resume treatment, in which case he can choose to discharge himself from hospice and return to active therapies. It can't possibly be the wrong move!

Treatable not curable = we can slow the progression of the disease, we can mitigate its effects, but we can't get rid of it.
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susiencalif Aug 21, 2019
What a comforting, thoughtful response to me. Thanks so much for caring.
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https://www.verywellhealth.com/what-is-stage-4-lung-cancer-life-expectancy-2249420


First off, big (((((((((hugs))))))))). And deep breaths.

Read the above link. Adenocarcinoma is treatable, meaning that it is life-limiting but life can be extended a bit. It sounds like DH doesn't want that.

It sounds like he wants treatment to stop and to get on with things. Making him comfortable should be the goal now, treating symptoms and not the disease.

It sounds like he would be eligible for hospice. Have you asked his doctors if he is hospice eligible? That won't give you much at home help, but it will provide some assistance and access to a social worker, chaplain and those kinds of supports.

I think you need to make a list of his day to day needs, sit down with him and figure out who is going to do what. Do you work? So who is going to prepare lunch? Get him dressed?

Do you need to hire outside help? Does he need to go to an Assisted Living facility?

Start by calling his doctors today about Hospice. He certainly made his views clear by leaving the hospital last night.
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Reply to BarbBrooklyn
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Honestly, I would stay focused on what he wants, not on advice from hospital. They do their job, which is to "treat" the condition. Just remember that "treatment" might just keep a person alive only to become sicker and weaker and more disabled. He has had so much "treatment." It seems that he does not want more. Hugs. this is the toughest.
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Reply to inkandpaper
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He grew up in a different time, men were men and he is apparently declining to give up his dignity. Just as Inkandpaper said... so he can live the last of his life in a body that’s sick and in shambles? I will say 1 word... DIGNITY. Let him have his dignity please, forcing him to continue treatments is not ok and he’s probably dying inside every time someone has to help him wipe his hiney or dress him. Let him die? No dear, let him pass with his DIGNITY. It’s about keeping him comfortable and that’s what hospice does. No more, he doesn’t want it so you’re not doing him a disservice by allowing him to go comfortably and naturally with a little help from hospice which I believe is free if he’s indigent. He’s your husband, help him stay as much the man you married till he goes. This is just my opinion, I hope you decide on how to proceed soon. Hugs from California
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Monica19815 Aug 23, 2019
This is exactly how I would have replied. So...ditto on this response from PowerOf3. My Mom and I watched my dad die of colon cancer at age 48. I was 19. This was just before Hospice came into being. My dad's death was very undignified and emotionally devastating for him. My Mom and I agreed we would never let ourselves pass on like Dad did. My mom got sick in Jan. 2012 when they found metastatic cancer (I had first suspected something wrong 2 months prior but she claimed it was "the new coffee" she had been drinking.) Mom died about 6 weeks later, on Hospice, completely comfortable and with time to see everyone and say her goodbyes. The steroids played a number on her brain for a few days but they figured it out and got her off them and she was herself again. Mom passed on the way she wanted to and I plan to do the same. At some point, I believe it is the right thing to do to let the patient/loved one decide how they would like to live their last days/weeks/months. It is the greatest gift we can give them when that time comes, even if it is difficult and devastating for loved ones.
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My husband had cancer for 12 years, he finally gave up and refused treatment. It was his choice, and I accepted it. His battle could not be won, we were both worn to a frazzle, it was the right decision for both of us. Sending hugs your way!
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susiencalif Aug 21, 2019
Dolly,
Your words mean so much, and incredibly echo what I've been through since 2011 with my DH. I so appreciate your time in writing this. Warmest thanks.
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I’m very sorry to hear you’re going through this. It sounds extremely difficult. I don’t have any advice. As long as he is of sound mind, it’s true that he can refuse treatment. I’m sure he’s sick of hospitals. Speak with his doctor today and find out the options. *hugs*
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susiencalif Aug 21, 2019
Thanks Julia: We've had 8 hospitalizations since March, 2019 and YES, it's extremely sad too. Such a vibrant man even 5 years ago when Cancer was in remission for the Esophagus. Bless you for your kindness. thank you
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Thank you Barb. Those are all great questions. I retired in 2014 to take care of him since this is the 3rd cancer since 2011-2012 but I'm now under a doctor's care for depression from burnout now since having all the doors shut in my face what with not qualifying for Medicale for AL or NH and and spending each day with medical appts, unexpected symptoms, chemo side effects med management, etc., etc., I have scheduled an appointment this AM to demand a hospice evaluation though.
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Reply to susiencalif
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I am so sorry you and your dear husband are going through this. The MD told you correctly that stage 4 cancer cannot be cured. He hopes to treat it to buy more time, but that treatment, as you and your husband are aware, can be grueling, and I can assure you that people at times die of the treatment before they do of the disease.
Have you and your husband spoken about the cancer, the stage, and what he would want the end of his life to look like. Please try to get support now from hospice personnel to put his wishes into writing, so that you can carry them out for him when he is not able.
Does he want palliative care with medications for comfort only, and in home hospice to administer pain medications? Do you believe he is ready to "go" or is he just over the treatment. If you haven't discussed any of these things in these last years of treatment it will be hard to face them down all at once, but Hospice can be very helpful.
Do you have friends or family for support in this heartbreaking time?
So many of us thinking of you now in this hard time for you both.
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Reply to AlvaDeer
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It really is the patient's right to accept or refuse treatment of he or she is mentally competent to do so. My husband accepted treatment to mitigate some symptoms of his incurable, metastatic cancer, but refused the chemo which would have prolonged his life but would have made him sicker during that extended time. I would have liked to have my husband live longer, but he is the one who would have had to endure the treatments and he had the right to refuse them. I believe I would make the same choice for myself.
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Reply to RedVanAnnie
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Does California have physician assisted suicide law?

Call hospice to get him evaluated. He certainly has the right to refuse treatment.
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PowerOf3 Aug 22, 2019
Yes we do, it’s established by the “6 months to live” diagnosis of a doctor. That might be an extreme measure here but we don’t know what she’s looking at or his wishes.
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