When is hospice euthanasia?

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I am starting a new post because the previous one on "death hastened by hospice" has so many replies. Do people expect medical euthanasia when they accept hospice? Does hospice staff aim for 24/7 sleep using sedating meds? When did this become the standard of care? When we call hospice should we be prepared to have our loved one be medicated heavily and die soon? Why is the word "comfortable" left so open to interpretation? Why is "agitated" as minor as slight tossing and turning during sleep? What has happened to hospice?

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My father passed away in January after being placed on hospice care 2 months prior in our home. The hospice never sent a priest out to give him the anointing of the sick like they told my dad they would. I never saw a social worker and we saw a nurse occasionally unless I called for something. They did come clean him every other day though.

My dad had a mini stroke in November and after was on Home health care for physical therapy, a nurse and occupational therapy. They were all able to get him up walking talking he seemed fine. The doctor came in a week later and said that since he refuses the hospital she wanted to put him on in home hospice care and we could leave it at any time. Since my brother had such a great Experience with the hospice he had before he passed many years prior we thought it would be a good idea. My dad refused the hospital and usually the paramedics wouldn’t take him because he could answer all of their cognitive questions even when he had a mini stroke.

My dad passed January 14,2018 and he woke up that morning feeling sick and vomiting. I called the 24 hr emergency line 6 times between 7:45 am and 2:34 pm when he passed and a nurse never showed up. We were told over the phone only to give him Ativan and morphine which he refused saying he wasn’t in any pain he wasn’t taking that. They never told us why we should give him that nor that he was actively dying and I was never given the signs of end of life.

My fathers passing was very traumatic. He was sitting up and went unconscious but still had a pulse. As soon as he went unconscious brown fluid poured out of his mouth and nose continuously. My mother, my 26 year old daughter and I were all yelling his name and freaking out. I finally sat next to him grabbed his hand and said daddy with tears pouring down my face. At this point the fluid stopped as did his heartbeat and his head laid over on my shoulder. The nurse arrived 5 minutes after he passed. Hospice failed my dad and they failed our family. They weren’t there when we needed them most. If I would have only known he was dying I would have laid with him and comforted him, right before all this happened I was upstairs making him his favorite banana pudding thinking it would make him feel better.

I still attend grief counseling but my grief will never get better better because I am so angry about that day and the events that took place. No matter how much I try that anger won’t leave.
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I'm so sorry to hear about so many horrible, sad and frustrating experiences with hospice. I was near tears at so many of your posts. it's emotional enough trying to get the best care for your loved one but to have an unresponsive, uncommunicative or overmedicating hospice staff is unconscionable. I didn't know much about hospice when we put my mom into their care. She was in a nice assisted living facility but fell a couple of times, complained about constipation, etc. and after 5 trips to the ER in one month, with one 5 day hospital stay, for a relatively minor complaint, having a nurse come to her instead of the stress on everyone, transporting her to the ER and waiting for hours... seemed the best for everyone. Every time anyone came to see her - nurse, aide, chaplain, social worker, I would get a phone call. They'd call before they saw her and if there were any concerns I had, they'd call after the visit to tell me about her condition. I saw her 4-5 days/week also and she had a personal daytime caregiver. She would refuse meds if she didn't want them - and the AL would call me every time she did. They never forced drugs on her and she knew what she was taking. When she was in pain, she wanted the pain meds. When she wasn't, she'd refuse them. I don't feel that the meds hastened her death. The meds definitely made her more comfortable. She was in constant pain before hospice and couldn't get comfortable, couldn't sleep, etc. When she started requesting the pain meds, it made her so much more pleasant. She enjoyed eating, she enjoyed seeing people. She wasn't getting physically better but she felt better.

The AL told us that some hospice companies were better than others. We were happy with the one we went with. Sometimes I felt they communicated too often but I was always glad to get the updates. If you have any concerns or bad feelings about the hospice company you're using, switch! My mom had COPD, CHF and PAD. She was maintaining, eating, etc but she became less mobile because of her PAD - her legs wouldn't support her any longer. At the end of COPD, carbon monoxide builds up in the brain which causes the sleep/lack of consciousness. When she got to the phase, she only lived 2-3 days. The hospice nurses called me when they were afraid she would live the night. No meds had been administered. Her O2 was on max - her body simply couldn't sustain life any longer. It was peaceful - I was with her - watching each labored breath until there were no more breaths. I think her brain stopped functioning hours before her breathing stopped because of the CO. I'm glad hospice was there for us - they made her more comfortable and were very attentive.
--Suzanne
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Carla B

Actually, my friend was determined by all qualified medical professionals to be unlikely to have more than a year to live and that treatments were not working well. That is how she was admitted to palliative/hospice care.

Apparently the doctors were wrong about how long she could survive.

With rehabilitative care she is still going strong, although her illness is not curable.

She is not the type of lady that likes to be sedated. So she is willing to put up with some pain to avoid it.

She takes advantage of meditation, acupuncture, massage and other techniques to relieve pain.

Thank you for the Kudos and sending some back to you, too.

Here is a link with some information about who is accepted into hospice.

http://palliativedoctors.org/hospice/care

From the link: [ "What is Hospice Care?

There may come a time when efforts to cure or slow an illness are not working and may be more harmful than helpful. If that time comes, you should know that there's a type of palliative care—called hospice—that can help ensure your final months of life are as good and fulfilling as they can be for you and your loved ones.

Hospice is not about giving up. It's about giving you comfort, control, dignity, and quality of life.

Eligibility

Insurers, Medicare, and Medicaid will generally provide coverage for hospice care if your doctors determine you ( likely) have 6 months (a year in some cases) or less to live if your illness follows its normal course.
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Heather - the account you shared about your friend is shocking! I'm appalled that any family would place their loved one in hospice unnecessarily and that hospice would accept a person who did not appear to be terminally ill. Kudos to you for putting a stop to the craziness and getting your friend out of there. I'm glad she is doing well.
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CarlaCB wrote:

["Heather - I'm thinking about what happened to my mother in hospice. Her immobility was not caused by her pain medication. Her immobility was one of the first signs that she was dying. She came home from the hospital bedridden. I tried to get her up only once - she could not stand up even with me holding her up. She couldn't use the bedside commode even with help. She couldn't turn or lift herself either. Even using the bedpan was too much - she had to be catheterized."]

Carla CB:

In your case your mother was already immobile and could not even stand.

I am talking about people who are mobile, I am talking about people who are still walking and mentally alert, and who request NOT to be drugged who may not even be in much pain, but are given sleep medications. Or, who are at tolerable levels of pain and specifically request NOT to have pain meds.

The person I am caring for called me, desperate and in a panic, requesting that I take over of medical and financial POA, after her children put her in a hospice facility that was drugging her to induce sleep. She pretended to swallow the pills, so she could avoid them and stay alert.

She then contacted me. Her children were all fighting over who gets what, etc., according to her, and she did not trust them. She felt the children wanted to hasten her decline. Whether or not this is true, is not for me to decide. The children may have had good intentions, but were simply naive.

However, she clearly did not want to sleep all the time. That is why she called me.

I moved her out of hospice and into a rehab facility. That was four years ago. She is does not have dementia and walks fine.

There are some wonderful hospice facilities, but some that are not so wonderful.

Some simply obey the requests of the medical POA, particularly if a patient is difficult. Others will not and will suggest that a patient be put in rehab, if that is a better option.

The key is to be aware that some of the not so good facilities will do what is best for them and not the patient.

That is why the courts are filled with neglect lawsuits regarding such facilities. If one simply goes down to their local court house they will be able to read the horror stories.

Also many times, the workers at the not so good facilities will clean a patient up when they know the patterns of the family visits but if a hidden camera is used, the patient is not attended to at other times.

In your case, you mother was obviously declining rapidly. You and your family were there attending to her, too. So you were obviously very ALERT TO HER NEEDS.

Your mother was lucky to have you.
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I’m so sorry for your loss MadGdaughter. I am glad you finally got answers. Our family experience was a little like yours, we knew MIL was dying but we didn’t know it would be so soon because nothing was communicated to us by the family member in charge, the person who was primarily taking care of her. The night before she died, I asked him if the nurse had given an indication of how much time she had left and he said no. I found out shortly after she passed that the nurse had told told him she wouldn’t make it through the weekend. We had a problem with lack of communication amongst each other and information being withheld. We knew her heart could give out at any time but we expected/hoped that when the end was near, we would be informed and allowed to say goodbye. But like I said, there was communication issues and when she was in her final days, that information wasn’t shared so we were all blindsided when she died. At a time like this, communication is so important.
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Hi everyone. My grandmother passed away 6 days after going on hospice. I was clearly very upset and confused when I found this forum and posted. For my tone I apologize. I’ve done a lot of thinking/studying on this subject. I’m thankful my grandmother (I’m told) wasn’t in pain or distress. That is a blessing. I do now realize that all my family members were shocked. No one knew she was days away from dying. When I walked into the scene I believe her children were just realizing their mother would not wake up. She went into a deep sleep as soon as hospice came in and did their thing. She had been talking and there was shock that she would not be waking up. My big issue with this: the family should be very clear about what’s going to happen as soon as hospice walks in. My understanding is that wasn’t made clear. The hospice nurses were wonderful and brought great comfort to my family. I’m in my 30’s and have a lot to learn about this process. It’s unnerving to watch a loved one’s body shut down but I feel knowing more about this inevitability for all of us brings a little comfort to a mysterious life event. I appreciate all of your wisdom as caregivers and will continue monitoring these topics. By the time (hopefully a long time from now) that my parents health declines I will hopefully be more prepared mentally and emotionally to give the support needed.
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In 2013, when my stepmom was mostly "out of it" on morphine in a hospice facility (she asked to be drugged into sleep because of the pain), she was bathed, changed, and had her bedding changed daily. She was turned several times per day and even and had her limbs exercised regularly. Nurses came in every half hour to check on her. She had a TV, DVD player, and stereo in her room, all provided by hospice. The only "fight" I ever had with the nurses was to make them leave the window open - unlike most elderly people, my stepmom preferred cool temperatures.

My mom already sleeps 20-24 hours a day at home, and mostly refuses to get out of bed. She refuses to have her limbs exercised and eats barely anything. She is not allowed to take anything stronger than Tylenol because of her kidney failure, so it has nothing to do with being drugged. Her attitude did not change when she spent time in hospice for my respite break, and I don't imagine her attitude will change when she goes into full-time hospice care next week. The hospice room where she will stay also has a huge flat screen TV, DVD player, and stereo, as well as two huge windows looking out onto the garden. There is a main living area where she could cook or eat her meal in a homey dining atmosphere, or watch TV, do puzzles, play the piano, and engage in any number of other activities if she wanted to. She can have food any time of the day or night if she wants it - even if it's 3 in the morning. I can even bring the pets to visit.

I am eternally grateful for everything hospice services have provided to my family.
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My bro died many years ago but as he lay in his bed he looked anything but neglected - his beard was trimmed, his hair and body were clean, his room and bedding smelled fresh, he looked.... comfortable. I'm so sorry for those whose experience was so different from ours.
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Heather - I'm thinking about what happened to my mother in hospice. Her immobility was not caused by her pain medication. Her immobility was one of the first signs that she was dying. She came home from the hospital bedridden. I tried to get her up only once - she could not stand up even with me holding her up. She couldn't use the bedside commode even with help. She couldn't turn or lift herself either. Even using the bedpan was too much - she had to be catheterized.

My mother was sleeping maybe 20 hours per day when she came home. That was without pain meds. It certainly didn't allow us to withdraw attention from her. She woke up every hour needing a sip of water, her head or legs adjusted, more blankets or less, etc. And we took those opportunities to get her into clean clothes, change her bedding, wash her, apply powder and lotion to her skin, feed her a few bites of whatever she could eat, etc.

We started giving her pain meds when she started moaning with pain. We knew she was dying - we just wanted her to be comfortable. I hope it's not true that meds are given in hospice facilities to allow staff to ignore the needs of sick patients. It certainly wasn't true when we used hospice to allow Mom to die at home.
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