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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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It is February 2020... It's not locked :(

I am sorry for your loss.. This just showed up today from what I see...

Prayers are with you... Take care.
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The OP’s husband has already passed away. This post is 5 months old. Time for it to be locked.
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You and he need to have a serious sit down talk. It very much sounds as though he has had enough. If that is the case then if you love him you will listen to what he has to say.

The Dr saying his cancer is treatable but not curable means they can give him treatment to a point at which it will lengthen his life or put the cancer into remission but it will not go away, he will always have it and it will impact his life as it is doing, with a chance that at some point it will become untreatable and all that brings with it.

Hospice assistance is available in the home, he doesn't have to go into a specific facility as long as you and they can cope in the home with assistance available. If he is in agreement and you can get them to come and talk to you they are best equipped to give him the best standard of life available to him.

These are not decisions for you to have to struggle with alone - he needs to be open to you on his feelings. He is probably fighting to not cause you distress, but is succeeding in doing the opposite. He also may be struggling to accept his position and be one of those of us who don't want to consider paperwork as it feels like the beginning of the end - it is a pity we don't all do all necessary forms when we are fit and well, but we do tend to leave them and then they become somehow more final - hospice staff can help with helping him see what is good to put in place if he wants any wishes on his treatment taken into account.

Its hard to talk, and you have all my sympathies at such a difficult stage in your relationship, but for both your sakes you need to sit down and each say your piece and discuss.

Hugs and thoughts to you xx
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This post is from August
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For anybody in this situation, if the person has his own right mind they has the right to refuse treatment and that's that. If you doubt this, you can have him Baker acted for psychiatric evaluation.
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What a horrible dilemma! I understand your angst!
I do not see a date on your post; I just logged on 01/13/2019. It is sometimes appropriate to refuse aggressive care, especially with a brief lifespan prediction. Doctors are trained to treat, regardless of a prognosis or age. My husband, 81, is a Palliative Care patient with PPO coverage. I know nothing about an HMO; however, a hospice will administer "comfort care" just as Palliative Care will. If you have not already, I encourage you to contact Home Hospice for a visit.
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Wondering how Susie is tonight?
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Sweetie - you are phenomenal.
You are going through so much and it really influences clear thinking. Thank you for reaching out for others’ perspectives. It is a good step to helping yourself.
As for your husband - it seems like he has made the decision already.
How fo you have the conversation about “the next step”? Just ask him his preference, then just listen. Your hopes are probably not his desires at this point. Pain is a ruling factor and he may not express it any other way than to refuse further help. It is his life, and his decisions will affect you, but keep focused on what he wants at this time. That is probably as far forward thinking as he can manage at this time. If possible, talk with his doctor about your concerns. His doctor cannot share any of your husbands medical info with you, but he can help settle your unanswered questions of how you can help, etc. That doctor has the inside track and may be your next best resource.
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Just more reinforcement for hospice. My aunt "graduated" from hospice & went back to her daughter's home. Only to be readmitted several months later. Admission is based on the best prediction by the MD that the patient has less than 6 months to live. My sister-in-law's father was in hospice care & it was a comforting experience for all. And my mom had hospice during the last 2 weeks of her life. She made her wishes known to me months before when, moving to a new apartment in AL, she showed me the outfit she wanted to be buried in! I knew then that, after many medical problems, she was tired of the whole thing. She went into hospice after fracturing her hip & having complications. I guess my ramblings are to reassure you about hospice & that loved ones can help US thru THEIR transition. All the best to you.
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Prayers for you and your husband during this most difficult time. Praying for comfort and strength.
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Against Medical Advice
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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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susiencalif: Now that you have Hospice, please let us know how you and DH are doing. Praying for you.
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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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😐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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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