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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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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 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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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 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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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 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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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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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 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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Good luck and hugs. I know that scheduling the appointment with hospice is a terribly difficult thing to do, but I think your DH is saying that this is what he wants by leaving the hospital. Having the end of life discussion is HARD, but I'm glad hospice will be able to help you through it. My heart goes out to you!!
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susiencalif Aug 2019
That means a lot Katy. Thank you very much.
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Susi, were you able to get in touch with Hospice today?
(((Hugs)))) and know that we're all thinking about you.
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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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Saying in a caring way so please take it that way.............. Calm down. Have honest sit down discussion with husband (you may need to brace yourself for his answers) find out what he wants, and do your loving damnedest to follow his desires no matter what you would prefer. You have been together 37 years, its a long time and a loving time, but maybe his illness has become too much for him to want to carry on. In which case the hardest and most loving thing you can do is support him in his choice, contact hospice to come and visit and advise you on how you can care for him, and thank God for the time you have had together and how fortunate you are in being able to support your husband in whatever his choice(s) are.
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Many prayers to you. My mom was 92. Had cancer of mouth. Had operation to remove tumor but no radiation or chemo. When she was finally in pain I called her doctor to ask for hospice. At first he refused. I had to explain we were not treating anything and she is in pain AND she is 92 why make her suffer. He finally agreed. Best thing we did . It does sound like he is ready for hospice . Just love him, read to him,show pictures of your wedding, kids etc Enjoy what time he has left.
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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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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 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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Hi Susie,
Just checking in to see how you are doing. We are here and care!!
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AlvaDeer Aug 2019
I am thinking of Susie, as well, and hope she is OK, and that she and her husband have been able to speak with hospice.
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A person has the right to refuse treatment if they are alert and oriented with their own cognition. If a nurse or doctor gives him medications against his will that is called assault and battery, and if they hold him against his will in hospital that is called kidnapping. The medical authorities can be charged with those crimes. Contrary to what many doctors and nurses think, insurance will still pay for AMAs due to patients' rights to refuse treatments.

The only other alternative is the Baker Act if you feel he is a danger to himself, especially if he is confused. Actually if he has documented confusion the doctor should have Baker Acted him for medical and psychiatric evaluation. If both are clear and he is of sound mind, he has the right to refuse treatment and leave the hospital. You can call 911 and let that happen, but like I said if he is of sound mind and is cleared he can indeed refuse treatment and he has that right.
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He knows i ti Time to Go, love, Let him Die at Home. You have Not even Made yourself Anything Here, Dear, To entitle You to his Last Wishes, Such as HCP or POA...God bless, It is in God's hands now
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susiencalif Aug 2019
Yes, God bless you Parise for those necessary words I needed to hear.
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As gladimhere said - call hospice. Not sure of your state, but hospice will likely do their own assessment anyway. With the HIIPA forms they can get all the medical records they need. We used them for four parents in five years.
Hospice takes over all medical care and provides supplies like wheelchairs and hospital beds. The hospice nurses we had were amazing.
If the patient decides to treat the main condition again, then hospice needs to be discontinued. It is fairly easy to jump back and forth if needed though. For example when a "miracle cure" fails.
Hospice provides care and comfort for the patient. For us it absolutely took strain off of the rest of the family so we could just concentrate on our loved ones instead of fighting doctors, appointments, and bills. We could talk about the good times rather than the hospital.
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susiencalif Aug 2019
Today the wheels went in motion for HOSPICE. It's a bitter sweet day Enderby, but it so wonderful to know from this ARMY OF ANGELS website
what to expect for our family when friends like you can give me a little
less pain knowing what I can expect. Thank you so much.
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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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They never tell us how much more suffering there will be with more treatment. Maybe he has had enough. He is dying, it seems. Not a question of living or dying. Question of how much treatment can be tolerated before dying. Some know when to stop. You suffer also in this process either way. Hope you can talk to him and accept his wishes to stop treatment. To be loving and supportive is all you can do.
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susiencalif Aug 2019
Goody2shoes. …..He is ready to stop treatment and go into hospice. I want to thank you for helping me today.
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A book that has been very helpful to me as a caregiver is new from Crossway and titled: Between Life and Death by Kathryn Butler, MD. I am sure it is sold on Amazon. I will say that it is written by a Christian surgeon who works in trauma and critical care. She has seen when medicine is helpful and life-giving and when the same treatment can be devastating and life-removing. There are 3 sections and a total of 13 chapters in the book, and you can easily pick and choose the ones that are most important to your needs. Part 3: Discernment at Life’s End, was very helpful to me as I recently helped my cousin whose mom—my dear aunt—92, with Alzheimers and an unrepairable fractured femur due to a fall in her AL and was hospitalized. We were able to get her on hospice and moved to a hospice house. She was given comfort measures and sweet, compassionate care. She passed peacefully several weeks ago.

Hospice has had a huge part in my family’s life. My mom who had Parkinson’s was on and off hospice several times (she improved with their care). When she developed pneumonia and I knew she was coming to the end of her life, I requested hospice and the ER doctor who diagnosed her pneumonia was kind in quickly getting hospice ordered. My dad had prostate cancer that spread to his kidney and his hip bone (probably many other places too). We had been told that my dad would have a “speedy demise” which didn’t happen for him. He chose not to go through any cancer treatments or surgery and survived with hospice care for nearly 3 years. The comfort measures at the his life’s end were truly a blessing for him and for us as we sat with him.

I pray that you and your husband will have a great hospice team to come beside you and help you at the most difficult “life-test” the two of you will ever face.
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susiencalif Aug 2019
Your prayers and words are so wonderful busymom. I am so grateful for them. Susie.
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He may have decided that the time of being poked & prodded is over - there is an old saying 'he turned his face to the wall' in other words he has no more wish to live like this - extending life isn't always the best thing for the person rather it is so others don't feel bad that they suffer on - prepare yourself & take what his wants are into account
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susiencalif Aug 2019
You've read my mind. That's exactly where he's at and I appreciate your taking the time to tell me some very important words. Thanks so much.
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I don’t have direct experience but I have heard again and again that hospice, with its nurturing, palliative measures, can be more life-prolonging than the usual medical interventions. It certainly offers more support for loved ones. Peace to you and your beloved husband.
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susiencalif Aug 2019
Vegsister: We are going to be starting HOSPICE this afternoon and your kind words are so appreciated. I already feel a sort of relief of support.
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Better be contacting an attorney that specializes in emergency guardianship.  That AMA will not be paid for by your insurance company.  Get control NOW and the attorney can help you with this.  Also, join a support group just to have people that you can see and speak with rather than unknown people in the internet world.
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susiencalif Aug 2019
Thanks Debbie. Hospice has now taken over the emotional part, and I appreciate so much your legal direction. Gratefully yours
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Just sending my best wishes to you and your DH, Susie. My mom left the hospital AMA when she had cancer, but she was already enrolled in hospice when it happened. (She collapsed suddenly due to a UTI that had become septic, and she was admitted to the hospital, but after 24 hours she refused to continue receiving IV antibiotics and the constant poking and prodding in the hospital). I didn't know for sure if she was going home to die, and neither did she. We just took it one step at a time. Since she was immobile, we brought in a hospital bed, and hospice workers came to check her vitals and to bathe her every day or two. After a few days it became clear that she was entering the dying phase.

I'm glad you now have hospice because an in-home caregiver needs the moral support as well as the physical help with bathing, changing linens, etc. May your husband's passing be as easy and peaceful as possible, for both of you.
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I hear your heart breaking. You want the best care for him and he seems to "not" want this. You need to have a heart to heart talk with your hubby with maybe somebody from his care team present.

Ask your husband
What does he want his life to look like in spite of all the medical problems?
What kind of palliative care would he and you be comfortable with?
What kinds of care would his cancer treatment require and how would this impact his life: pain, loss of energy, loss of appetite...?
How does your husband want to live and die with dignity?
Tell your husband
What scares you about his current condition.
What you need to feel more comfortable with his life decisions.

Try to formulate a plan together that honors his wishes and alleviates your anxiety. Ultimately, your husband has the right to reject treatments that he sees are not according to his wishes. He needs to know that you want to know what his wishes are.
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😐I don’t have an answer for you but want you to know my heart aches for you.
Prayers
eloise
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AlvaDeer Aug 2019
They have hospice coming in now. I know we are all here in support of Susie and her husband.
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Susie I'm very glad you have Hospice on board. Let us know how you and DH are doing. We care!
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susiencalif: Now that you have Hospice, please let us know how you and DH are doing. Praying for you.
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Will someone please explain what AMA is??????????????????????
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Caring4Alice Aug 2019
He left the hospital Against Medical Advice (AMA) - her husband refused treatment and left against doctor's orders.
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Against Medical Advice
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