Hospice? good? bad?

[barb162]

Anyone have any recent experiences with close friends or relatives where you were able to observe hospice?

[evlbstrd]

1. Good.

They helped my mother as she was dying of cancer.

[barb162]

6. May I ask if your poor mom was able to eat and drink

until the end? Or did she have an IV or both?

[evlbstrd]

12. She was able to eat with some assistance.

She didn't have an IV. She did have oxygen and hospice proviede morphine patches.

[Fredda Weinberg]

13. Don't be afraid of stopping hydration

Momma didn't suffer one bit - I gave her her favorite (coke slurpees) and foam lollipops until she lost consciousness.

[barb162]

17. That's the part that gets me, the lack of hydration

Recently...the man was in a coma and they didn't have an IV for water. Something about not giving the damned water through an IV

[nini]

42. The dying do not need fluids.. their bodies cannot process them anymore

That's why the dying in the hospital get the gurggling sound - they are drowning in the fluids being pumped in via IV. Their bodies and shutting down and does not need them. Drowning in IV fluids is more painful than allowing the body do what it does naturally.

[barb162]

48. I didn't know that.

I kept thinking he was dying of thirst quickly, versus cancer, which is what he had. And if he couldn't drink, then give him an IV with the damned water. Just keep him out of pain. He was kept out of pain with a morphine gel tab under the tongue every 3 hours.

[nini]

62. That's a common feeling and how we are programmed

but the reality is the body isn't functioning right and trying to keep them hydrated when they have no use for it just prolongs the dying and makes it more uncomfortable.

the morphine will keep them as comfortable as possible while the body shuts down.


:hug:

[Fredda Weinberg]

101. This is truth

I literally fought my oldest brother to honor my mother's wishes - he called Florida's family services but my mother was still in control of her faculties.

I got a card from her oncologist after she passes away - he said he'd never seen such a dignified life and it was true ... she enjoyed every treat I offered her until she lost consciousness and then my ordeal began - turning her every two hours to prevent bedsores. Fourteen days, but I figured what the heck ... she'd put up with my mewling and crying; this was just returning the kindness.

Her final word, while I massaging her feet to ease her cramped toes was, "Good". Distinct and clear - and a comfort even now. She saw the end - the day before she'd managed, "I'm dying" but said it without fear or sadness. It was just the end to a fifteen year battle with cancer - she'd finally gotten the palliative care she deserved.

[FlaGranny]

128. My mother was in the last stages of

multiple myeloma (bone cancer) when she went into hospice. I was taking care of her at home with the help of Hospice, but it got to the point I wasn't physically able to do it. She only had to spend 4 days in hospice. In my mom's case, she was too weak to swallow. She even choked on the water in a damp mouth swab. The one thing you have to know about Hospice is that they will do nothing to prolong a dying person's life. If the person is able to physically eat and drink, they do so. Once a person no longer is able to do those things, they do not feed or hydrate artificially. Their sole purpose is to help the person die in comfort. By the time a person is admitted to Hospice they are in the process of dying. Sometimes it takes a while and sometimes not.

As my mom could not eat or drink, she was kept comfortable. She slept a lot, but when she was awake there was no sign of discomfort. She was relatively lucid right up until the end. Although she could not speak due to weakness, I could tell by her eyes that she was still aware. If she was in any discomfort I would have been able to tell.

[politicat]

19. What are foam lollipops?

Sorry, just had to ask....

[Warpy]

23. They're called "toothettes" and are mainly used to clean

the gums of people who have dentures. They're soft, absorbent sponge rubber tips on lollipop sticks, basically, and are useful in getting moisture into the mouths of dying patients who invariably are mouth breathers.

[politicat]

29. Those things! Okay.

I know those things. I'd never heard them called that before.

[Fredda Weinberg]

102. Momma had a nasal cannula - oxygen to her nose

I knew it was her final night when she slept open-mouthed - the pillow was bloody.

But she never had chapped lips ... every time I rotated her position (though hospice had gotten us a pressure adjusting bed) I moistened and lubed her mucous membranes.

[phylny]

28. I assume they mean Toothettes

They soak up water and can be used with patients at risk of aspiration to moisten their mouths and clean teeth and mucous membranes.

http://www.disposablemedicalexpress.com/IBS/SimpleCat/Shelf/ASP/Hierarchy/0700.html

[BlueInPhilly]

2. Hospice are AWESOME!

I volunteered for one.

[barb162]

11. I have know two great hospice volunteers

God bless you; I don't know how you do it!

[0007]

50. Thanks you, it take a special person for Hospice & Aphasia

patients.

[Blue_In_AK]

3. Hospice is very good, in my opinion...

My mother had a lot of help with my dad in his last days through hospice. He was able to die at home with dignity, which helped us all.

[babylonsister]

4. Not recent, but my mom, in 1990, was under hospice care

and they were terrific. Very professional and caring. My sister is now a volunteer as a result of that experience.

[enki23]

5. good. though it would be good for people to be able to choose euthenasia

as an alternative.

[elehhhhna]

32. hospice tends to step up the morphine as the end is imminent--

Nurses you know WELL may even say they help speed the inevitable. Morph every 15 minutes, don't turn the patient, and it's a peaceful sleepy transition.

[barb162]

51. Morphine depresses the respiration I am told

[Warpy]

61. What's better, screaming in pain for an extra hour

or floating out on a tide of morphine an hour sooner? Patients and families generally decide that one.

[barb162]

81. floating of course

[mucifer]

84. I am a hospice nurse morphine calms uncomfortable breathing

only in very high doses when the person is not used to the high doses (most hospice patients are used to very high morphine doses) does morphine stop breathing.

[elehhhhna]

120. our neighbor's hospice nurse (a saint) told us it also prevents

a last gasp or struggle at the end (which freaks the families out and is unnecessary)

[Warpy]

49. My mom had an OD within her reach

thanks to my pop who got a couple of Dalmane refills without telling anybody he was saving them for her. She knew they were there and it gave her a great deal of comfort. I just noticed she stopped begging me to help her die.

She never did use them.

That's the experience they've found wherever right to die laws have been passed. The availability of an easy out gives people peace of mind. Using the easy way out is rare.

[elehhhhna]

121. our neighbor decided to od one night about a week before the end--

her son stayed at our house, daughter w/ another neighbor...

She took the extra pills and slept 'til noon the next morning--woke up feeling "pretty good", considering. THAT was a very tense night and morning, lemme tell ya.

[Cleita]

7. Yes and good, I'm all for it.

I have left instructions that I be given hospice when my time comes instead of prolonging the inevitable.

[Fredda Weinberg]

8. We did it at home

They delivered everything my mother needed - even the morphine. They also dropped off an emergency box, with pain meds in pill, liquid and even suppository form. Their nurses were excellent - for me as well as momma and the doctor was ... well, just what the doctor ordered.

I asked everyone who attended the funeral to make contributions in my mother's name to Palm Beach Hospice. They even kept in touch with me in case I needed a shoulder to cry on.

It makes me feel better about facing the final six months of my own life.

[barb162]

20. May I ask if they allowed her to have "regular" meds

or did they take her off the meds except for palliative meds?

[Flying Dream Blues]

40. Yes, my mom will have all her meds, not just the palliative ones.

[barb162]

60. That's good I think. The case I am thinking about

they took the guy off water, his potassium pills, etc., when he was in a coma Hospice gave him morphine and oxygen. He died peacefully. It wasn't as if potassium is CURATIVE. I think there has to be a middle ground and it sounds like the hospice you had is such a middle ground one. Then again, but subjectively, what's the point of prolonging a person's life in a coma.

[Flying Dream Blues]

68. I think home hospice care and in-patient care are different?

[barb162]

83. I just don't know. He was in a nursing home and hospice came

to the nursing home. What amazed me is they brought an oxygen tank in and gave him oxygen, though he didn't seem to have a problem breathing. But no IV with water. Now if they would have done something differently if he had been home, I don't know. Now the fact he was in a coma the last 5 days and wouldn't have known about having a problem with breathing, I still wonder why they brought in oxygen.

[Fredda Weinberg]

104. You can't have hospice and treatment

Momma had to discontinue her chemo but the diminishing returns made the choice for her. By the time the cancer had reached her lungs, her quality of life had deteriorated - I was lifting her in and out of the car to her wheelchair.

Once the doctor has certified that you are eligible for hospice, the choice belongs to the patient. My mother continued treatment through Herceptin - once that proved ineffective, the final option was a cruel joke ... even the package only offered an extra six months at best.

One day, she simply refused to go to her treatment. My brother's wife (he's an MD who tried to bully me into hospitalizing her and the bitch was even worse, basically accused me of wanted to murder my mother) tried to talk her into complying but she calmly held her ground. The social worker came that afternoon and my mother was free of pain that evening.

[barb162]

107. Why did your brother want her in the hospital

and in your other post you mentioned he called Florida Social Services. Did he think her pain management could be better in the hospital? Did he call them about forcing her in the hospital versus your taking care of her?

[Fredda Weinberg]

110. He wanted her to continue treatment

In the oncologist's office he tried to pressure her, "Don't you want to see your granddaughter's twelfth birthday?"

My mother waited until he went back home before she gave up the chemo. When my sister-in-law couldn't get what she wanted on the phone, they called Family Services and accused me of abusing my mother. Fortunately for me, the investigator met up with the home care nurse at the agency before stopping by the house. As soon as I opened the door and she introduced herself, she saw my reaction and gave me a hug - telling me what she'd already found out. On her way out, she gave me her card and told me that if the "anonymous party" tried to intervene again, she'd ask the judge for sanctions - that's how I knew that my SIL, who's licensed in Florida, was involved.

[barb162]

114. These

end of life decisions are so grueling on families especially when there is disagreement. When I read your posts, there was the "click" for me of a few people who disagreed on whether the person should be in hospice or continue treatment. This man who I knew , well, some of his kids wanted him in rehab to see if maybe a few more months could be squeezed out and others were fighting the rehab. Same thing with the hospice decision...should he have been in hospice a few months before or should he and the family wait. The thing is, a very wise person (who took care of her father at home without hospice)told me, it's such an individual decision and no one is right or wrong. There can be some really bitter arguments and people not talking to each other and calling the government and on and on.
A friend of mine told me her sister was complaining to a long-time neighbor how rough it was on her taking care of her husband at home and the neighbor called the government! They forcibly took her husband out of the home and evaluated him somewhere, where he just got worse and worse. No one in the government would take responsibilty for follow-up. The wife finally got her husband back and she puthim in hospice this past week. It was the way the government got involved that shocked the wife and husband and it was to the detriment of both of them, physically and emotionally. The wife is an RN and knows how to take care of sick people, but the 24 hour nature of it was completely wearing her down as it was going on for months. This was in Charlotte, NC over the last few weeks.

[brook]

58. They helped me with my mother, too.

Hospice was brand new then - yet I couldn't have had better care. I cannot praise them enough for all they did for the both of us.

[atommom]

9. I've had only good experiences with hospice.

They were a great help to us during my mother's illness. I'd recommend using hospice if someone in your family is seriously ill.

[chookie]

10. Home hospice

We had it for my Mom's final illness a few years ago, and it was beyond any doubt the smartest thing we ever did. She spent her final weeks in comfort and passed peacefully. The hospice also looked out for us caregivers.

[barb162]

82. did they do a 24 hour a day sitting with her toward the end

[chookie]

86. No

We never requested it. IMy sister and I sat with her at night.

[Sperk]

14. angels on earth....excellent at pain management also.

I want to have them around when I'm at the end, if I'm not lucky enough to go quickly.

[Flying Dream Blues]

15. My mom has just started home hospice care.

PM me if I can be of help to you!
:hi:

[barb162]

27. Oh thank you but I am thinking of something that has happened

and the man died 2 weeks ago. He was in hospice one week before he died; they are exellent in pain management but I am not sure they are any better than if you had the same agreememnt with the docs with OR without hospice

[Flying Dream Blues]

36. Was he in the hospice or at home?

It makes a difference as to the insurance coverage if he was at home. Also, at least w/ my mom's illness, the drugs to make her more comfortable were not forthcoming until we decided to go the hospice route, because they work "against" her other treatments for emphysema. I think they will go on higher doses if you're on hospice care as well, since they aren't as likely to be liable for death.

[barb162]

85. He was in a nursing home for 3 weeks and in the 4th week

his family put him in hospice. He went into a coma and the next day they put him in hospice and he then lived 5 days under hospice and in the coma. They gave him morphine every 3 hours which I found interesting from the standpoint he was in a coma and wasn't feeling pain. They had someone from hospice sit with him 24 hours a day and I thought that was a nice service. They also tell you things like see those cyanotic finger nails? He's got a day or two. They let the family know the time is soon. So if they saw him suddenly failing they could call the family at 3:00A.M. or whatever.
Yeah, regular health care has a hard time dealing with certain palliative drugs when they interfere with curative drugs. Although a long time ago when my mother died and hospice had not really taken hold, the doctors just kept an IV in her giving her water, sugar and that kind of stuff and also some extremely powerful pain meds. It was like hospice in the hospital back then because I lucked out with some very powerful doctors who ran the hospital board, a major medical center hospital. I wish back then, though, someone had told me about cyanosis and the signs because I would have sat with her the last day. But way back then, they just didn't do things like that. SO even though I stayed with her this one day till about 10PM, she died at about 2AM and no one was there with her. I got the horrible call from the hospital when I was at home. If I had known she was so close I would have stayed. That's one big diff with hospitals and hospice... hospice lets you know.

Much love to your mom and you and your family. It's never easy. sigh

[Flying Dream Blues]

91. I've heard they help you know when the time is near.

I know I will appreciate that. I don't know why they don't give the water IV. I don't really understand the morphine if he was in a coma, either. I hope the family have come to terms with the circumstances around his passing. Thank you so much for your loving wishes, and the same to you.

I've heard already that my mom is MUCH more comfortable due to morphine or other things that they weren't giving her while she was in "rehab." Rehab was a cruel joke, but I blame Medicaid and not the doctors on that one. I talked to her tonight, and she was home finally, having gone into the hospital in an ambulance on Feb. 1. She was SOOO glad to be home, in her room, with my dad there and her crazy little dog. She had her favorite dinner and was nice and woozy from whatever feelgood stuff they are now allowing her. Considering I haven't even seen her even marginally comfortable during the past 7 weeks, it was enough to make me weep with relief and joy.

[barb162]

95. Oh rehab!

They had this man in so-called "rehab" for about ten days and I think it is just a way for some nursing homes to get in more money from the government. Other nursing homes take the rehab very seriously adn really do try to get the people back to as much function as they can.

The family has come to terms with the man's passing; they have done surprisingly well. I think they all were relieved when he went into the coma because then they knew he wouldn't feel any pain or fear.

Morphine or some of the other drugs are really something. A relative was just in the hsospital for an operation giving herself the morphine button and we talked afterward of how she saw animals on the ceiling and in this picture she had in her room with 3 people standing by a stream, she saw 3 fish standing instead. With morphine, my mom saw her (deceased) cats and dogs in the hospital room! She yelled at me:"Why did you bring the cats here! You know they don't belong here." My girlfriend's mother saw monkeys in green costumes on tricycles. But one common thing is it takes away the pain totally and very fast. With an IV in about 30 seconds the pain is totally gone.

It has to be so good to know your mother is happy there with her husband, dog and her everyday people and surroundings. That is so totally important! She's relieved, you are, the dog is probably delirious he has his mommy back and your dad is probably feeling the same way. This is good.

[Warpy]

59. Trust me, they're better

because docs don't like to "give up" on patients and will keep pushing test after treatment after drug.

In hospice care, the focus is completely different. Instead of wringing out every last second of time on earth, which is why the docs do, they try to support the patient and family so that the patient can wring out some GOOD time, which means aggressive pain control, mood elevators, anti anxiety meds, whatever it takes to help the patient function as well as s/he can.

[barb162]

96. I think you're right ; that's the idea

you described a good hospice

[salin]

119. For many people responding to the question

Hospice refers to hospice home care - where hospice workers come to the home and work with the patient and the family and are available on an on-call basis. This is for individuals who do not want to die in a hospital - but who want to die in peace, at home, with family.

You are refering, it sounds like, to an institution. I think these are less common than the home-care hospice - so the responses you are receiving may not be referring to what you are asking.

Not knowing much about Hospice institutions - I would assume that they operate on the same premise as the homecare ... but know too little to respond. Perhaps reasking the question about Hospice Facilities - and what differentiates good from the less good might give your more direct information for this particular situation.

[FlaGranny]

129. My mom's doctor

treated her, he told me, much longer than he should have. He did it because my mother had such a will to live and enjoyed her life right up until the end. She was eager to stay alive. He tried everything in the book - with my mother's total blessing - until nothing worked any more. She was at the point where her bone marrow gave up making red blood cells. She could have been kept alive for a whlie longer with frequent blood transfusions. My mom lived for 8 years with one of the deadliest cancers, and died at the age of 94. She was social and active and happy until 4 months before she died.

[mantis49]

89. Depends on the doc.

Many are not comfortable with it. They are trained, for the most part, to do everything they can to prolong life. Most are not well trained in comfort or palliative care.

[Fredda Weinberg]

105. Hospice doctors are completely different

Their whole attitude is different - and they're fearless when it comes to prescribing narcotics.

My mother had seen pain specialists, but none of them were willing to address her needs - the cancer had spread to her spine and while an epidural gave a great deal of relief, she had to surrender to the morphine before she was truly comfortable. Those first few days of hospice - she passed away two weeks later - were the most peaceful and frankly, cheerful I'd ever seen her. Every time I'd bring her favorite Coke slurpee she was like a child receiving a birthday present.

She really was grateful for the way we handled it.

[politicat]

16. Hospice is uber-super-wonderful

My family has had two long relationships with two different hospices, and one of my friends is the nursing manager for a third.

When my stepfather was dying, he didn't want to admit he was going to die, and didn't want to face the realities of the legal issues; hospice worked really hard with him to help him get some peace and take as much comfort as he could. (That they failed and he refused to accept his illness even as he died is not hospice's fault - he was just a stubborn, difficult coot.)

Hospice helped get additional care for my great-grandfather so that his primary carer had time to herself, and when my great-grandfather decided to stop taking antibiotics when he came down with pneumonia the final time, they were right there, upping his morphine and making sure he was comfortable.

I can't say enough good things about Hospice - it's all about the patient and all about comfort - insurance, paperwork, etc don't come to the patient's attention.

[barb162]

97. how did your stepfather get signed up for hospice

Did he sign himself up (even though he didn't believe he needed it)?

[politicat]

98. His doctor and my mother insisted.

His doctor said that he couldn't keep prescribing the pain medication without a terminal dx, and since D was on VA/SS disability, the terminal dx kicked hospice into automatic mode.

D went along with it reluctantly, but he knew his choices were limited. It was a denial thing - when forced to confront his illness, he would, but forcing him took significant effort.

[barb162]

106. hmmmm, that dosn't seem ethically correct by the physician

It's as if he was being forced into hospice whether he wanted to be in it or not. As if the whole system was forcing it rather than being a choice thing. AM I correct there?

[politicat]

123. not really.

There are prescribing laws that oncologists and urologists have to obey, and they include monthly limits on narcotics. Hospice, hospitals and freestanding nursing facilities are exempt from those laws. Home use without hospice is not exempt. With his doctors' hands tied, D was offered hospitalization first. He didn't want to be in a hospital for various reasons, and he didn't want to be in a hospital more than he didn't want to die.

When D first got sick, he knew he couldn't make rational decisions about his health care - far too emotionally distressed about it - so he signed his MPOA over to my mother, who is capable of keeping a cool head in the middle of chaos. (D could never do that, and to his credit, he recognized it as maladaptive.) Mom was able to look at the amount of pain D was in, look at the options for recovery (none) and make the decision with him that he was likely to live longer and better if he had effective pain management. His other options were to go into a nursing facility or to the VA hospital, neither of which he wanted at all, most of all because it would mean he wouldn't see my mother as often (the available centers being on the other side of the Valley from where my mother lived and worked, and she was supporting them at the time).

Choosing hospice is a difficult decision at the best of times, but a terminal dx with no hope of recovery, a very painful, metastasizing cancer that moved incredibly fast, and psychological issues (he had a complex file, don't doubt it) beyond his thanatophobia and separation anxieties meant that he accepted hospice when my mother told him it was for the best.

I can't give you the whole rationale in 5 paragraphs on a message board because it took D, my mother, his medical team, and the rest of his support system a good six months to come to the decision that hospice was right. It wasn't a snap decision, and it wasn't made unethically or on the spur of the moment. But legal realities did figure into the process.

[Warpy]

18. I am a nurse. I got hospice involved in my mother's care

and they were absolutely wonderful. They take care of the living, period, making sure the main client is comfortable and able to participate in what time s/he has left. They care for the family, educating members on what to expect during the process and providing support 24/7.

My dad hung in there as a caregiver until three weeks before her death due to the wonderful care provided by hospice and only gave up and called me when she became diaper dependent.

My mother did die at home. We were able to call hospice and they came in and made the arrangements (which were pretty much set, only required phone calls) and got the paperwork squared away. They also offered my pop grief counseling afterward, something he took them up on very briefly.

It's hard to overstate the care hospice provides. They are great. I recommend them both as a professional and as someone who has benefitted from the services they provide.

[barb162]

92. I saw that with a friend of mine a few years ago

They helped her with a will and a bunch of other things, like planning her funeral and her hospice volunteer was absolutely wonderful and understanding. Just a great person.

But let me ask you something on this very aged man I know who died 2 weeks ago. Why would they bring in an oxygen tank into the nursing home and give him oxygen but not give him an IV with water. He was in a coma the last 5 days. Does that make sense to you? This man died very, very peacefully while in this coma.

[sharking]

21. Hospice? good? bad?

Although I've no doubt that many have good experiences with hospice, mine was not. My grandfather wanted in-home hospice, and I went to help my mother help him through his final days. Unfortunately, we were ill-equipped to provide the care he needed to go through end-stage heart disease, and, without going into all the details, it was very far from the "dying peacefully at home" scenario we had all hoped for. We finally gave up and took him to a wonderful hospice facility, where he probably should have been all along.

So my advice is to get good advice as to what to expect so that you can make an informed decision and arrange in advance for any medical personnel you might need. (My grandfather reached the critical stage over a weekend, and we were shocked to find out that we couldn't even get a nurse in to help us administer medications or guide us as to what he needed.)

My best to you, whichever route you go.

[Jersey Devil]

22. Hospice made the end for Dad much better

They came and relieved my Mom, setup all the drugs he needed for his very painful cancer, made him comfortable and spared Mom and the rest of the family from the exhausting experience of a hospital vigil.

Dad died peacefully in the middle of the night after being visited at home by his entire family on Father's Day. Thank God for hospice.

[Amaya]

24. YES

very good! I work for a hospice. Great Great people.

if you need any advice, PM me.

[AngryAmish]

25. Good

Allowed my mother a peaceful death.

[jane_pippin]

26. Home hospice was wonderful.

When my grandma was dying she was staying with my parents and they had hospice workers come in to help. They were so caring and compassionate-got my grandma to drink a little water, smile a little and helped keep her comfortable and the rest of us calm.

I don't know how they do it, but I'm glad they do.

[barb162]

31. Toward the very end did hospice stay with her 24 hours a day?

[Warpy]

35. No, they generally aren't needed

but will come in if a family just can't handle it. They have nurses, home health aides and generally a psychologist on call.

[Alamom]

43. We had home (hospice) care for my cousin for about 4 weeks.

She had liver failure at 49. Nurses first came every couple of days after she was sent home from the hospital. Then every day and when we knew she needed more medication than we felt quailified to give, they were there 24 hours a day. The same 2 nurses. One on the day shift (12 hours) and one on the night shift.
Several family members stayed too and we all got along very well with the nurses attending to her needs. When it was all over we felt the nurses were part of the family and they had made it all much easier for the family.

They were wonderful and I will never forget their kindness.



Edited to clarify: home hospice or home health care. I'm not sure which is correct.

[barb162]

93. that sounds awesomely caring

And I bet it was a total relief for the family and friends to have those nurses there.

[jane_pippin]

64. No, they were mostly just around during the day.

I wasn't living there at the time so I had limited interaction. If I remember correctly, the hospice workers were there during the day but not all of it. My dad was out of work at the time so he was home with her all the time. I think the hospice people came, checked on her, gave her a bath, meds, whatever it was she needed, checked on us to make sure we knew what we were doing as far as giving her meds went, that sort of thing. She wasn't at home very long before she died. Maybe two and a half weeks or so. Maybe a month at the most--like I said, I was living out of town at the time so I don't remember exactly how it all went. I just remember my mom being so happy that she had the workers there and when I met them they were just the nicest people.

[maveric]

30. I was a nurse in a Hospice and I cant say anything bad about them.

We treated the patients with respect and dignity during their final days. Treated them like they werent sick at all, at times. Most preferred it that way.

BTW, "San Diego Hospice" is one of the best in the US. Philanthropist Joan Kroc, built this wonderful facility, with her own money, some years ago when she was diagnosed with cancer. This place has indoor waterfalls, nicely manicured grounds and very caring staff members. It works on a sliding scale too. Completely non-profit.

[barb162]

37. Let me ask you... Is it your opinion that a person be allowed to

die in their own home and have hospice in there to help the family or is it better for the person to be in another setting because it is just too hard on the family when they die at home. Or is every situation different. The situation I am thinking about...the man died in a nursing home,he was in it the last month and he was in hospice the last week of that last month of his life. All he wanted to do was go back home!

[maveric]

47. It depends on the degree of care and the patient's/family's wishes.

Some patients need ventilators, feeding machines...that need to be tended to. Some homes cant handle the machinery or just dont have room.
Sometimes the patients wants to be at home, others want to be in a facility. Sometimes the families have power of attorney/Advanced Directive, and they make the call. Some want the patient to die at home, some are creeped out by that.
To simply answer your question, it depends on the situation levels of care and patient's/family's wishes.

[barb162]

94. thanks, that was very helpful

[Fredda Weinberg]

103. It's very hard to handle at home if you're alone

You legally can't leave the house unless someone else is there and in the end, I got a baby monitor, basically a microphone so I could monitor her labored breathing. But she wanted to pass away at home and I was determined to return the kindness she'd shown me when I was helpless and dependent.

It was the hardest two weeks of my life - I literally couldn't get more than two hours sleep at a time - but I'm very satisfied that I did this for her.

[barb162]

108. You are super special, Fredda

[Fredda Weinberg]

111. She was ... I just returned the kindness

I've seen lots of parents in my time - never have I seen one more patient, understanding and mature than "Da Momma". I had to share her with her students, but in the end, I got to spend lots of quality time they never had.

After my father passed away (I was there for that as well) I stayed in Florida until she could get her network of friends to drive her wherever she had to go (she never got a license). With some help from my computer she became the local Hadassah chapter's Woman of the Year.

She had a good life - all I had to do was make sure she didn't suffer in the end. Hospice was a great resource, but doing it at home is not a casual decision.

[lindac07]

124. My Mom and help!!!!!

My 80 year old mother was just diagnosed with neoplastic disease in her right lung. She is going to see a pulmonologist on Friday who will probably recommend a bronchoscopy or a lung biopsy. Do any of you nurses out there know what we are dealing with here? I can't find too much information on the disease, just get referred to 'tumor' in the medical literature on line. I want to go to this doctor armed with intelligent questions to ask and ascertain what we need to do. Can anyone help me? Thanks

[mmonk]

33. Good

my sister in law is a nurse and she worked for Hospice for awhile.

[Crunchy Frog]

34. I just worked with a hospice case as a Home Health Aide.

Just got the job, and he was my first case. I don't have any previous experience with that sort of thing, but I'd say that they provided excellent service. They made sure that he had round the clock people to care for him, and that he had all the medication needed to make him as comfortable as possible. They provided him everything that was needed in the home, including a hospital type bed, and O2, and they were always reachable for anything that came up at any time of day or night.

PM me if you want more specific info.

[mcar]

38. Hospice is wonderful

They do incredible work with families and the terminally ill.

[nevergiveup]

39. My poor mom is presently in her 14th day

without food or water. She cannot swallow and they removed her IV 10 days ago but her doctor is not willing to ease her out with Morphine. There is no hospice facility nearby and her home is long gone. It has been brutal.

[nini]

45. What the hell is wrong with that doctor????

I am soooo sorry to hear you are going through this. That doctor is evil. Giving morphine to ease pain is the absolute right thing to do. I am so sorry. :hug:


My dad lasted 5 days without food and water. Lean down and tell your mom it's ok to go and maybe she'll quit trying to hang on. We did that with my dad and he was gone in 20 minutes. It's like he had to be told we'd be ok and he could go now. It was so sad.

Sending you strength.


:hug:

[Alamom]

52. I am so sorry to hear this because

increasing the medication to a level of comfort is done widely and legal even though at some point it will depress breathing.

My mother in law was treated the same way in 1980. It was awful for a little over 2 weeks in a hospital. No food, no water, and then no IV.



My cousin who had hospice care in 2000, just slept and finally didn't wake up as the medication was increased to keep her comfortable. She didn't suffer at all.



Again, I am so sorry.

[Beaverhausen]

53. Oh I'm so sorry

:hug:

Are there any nurses where she is? They have been known to up a morphine dose....I'm just saying.

:hug:

[nini]

57. My sisters are both nurses and only gave my dad half the dose

of morphine, because they said it was doing the job - which it did at first. But later, I couldn't stand it one day and told them to give him the whole thing (meaning the whole 'dose') - they thought I meant the whole bottle - it seems funny now in a way but at the time I can see why they thought that I wanted to euthanize him. God, what a nightmare all that was. :cry:

[Beaverhausen]

65. It's all so sad

Why would we keep those we love away from painkillers at the end? What is the point?

Last summer a good friend was in hospice and another friend who is an oncology nurse came and took care of her. She made sure she had all the morphine she needed. My friend choose to leave when she was ready and at peace. :cry:

[Quiet_Dem_Mom]

54. OMG, that's inhumane.

My Dad had lung cancer that spread to his ribs, pelvis, liver and one thing the dr's repeated is that there is no reason anyone should have to suffer in pain with the medication available today.

He died of a lacerated intestine before his cancer could kill him outright, so we never had him in hospice. I wish I'd saved all his morphine meds, I'd send them to your mother in a heartbeat.

Wishing you peace and strength,
QDM

[barb162]

63. Honey, I don't know what to say.

If you are her guardian, can you get another doc in the picture.

[brook]

66. Change doctors right now!

I'm serious. When my mom was diagnosed with terminal cancer, I went to the doctor and laid out my plan.
I'd been through a bad experience with my Dad and hospitals and had researched the subject. My plan included a Brompton cocktail. Over the doctor's protestations, that's how we managed the pain part. A pharmacist mixed morphine in a prescribed amount with Sherry and that was Mom's Brompton. We never had pain episodes. {P}
The advice here on telling your Mother it's okay to leave is excellent. Please take it. PM me if I can help.

[Cobalt Violet]

75. Is it a Kindredcare Facility?

They have been sued for withholding pain meds before.
I know this may not be the time to thing about this but it pure evil and that doctor shouldn't be practicing.

[nini]

41. GOOD... the only way to go for the dying and the family

My dad was on hospice in 1998. He was able to die peacefully and when he was ready to. Not being kept alive artificially and suffering because of it.

My sister was so moved by the whole experience she switched her nursing to hospice care and has being doing that ever since. She was just voted national hospice nurse of the year in her company :D I'm very proud of her.

On edit: my dad died at home under hospice care.. not at a facility

[we can do it]

44. Very Good - and Very Helpful To Family As Well

[donco6]

46. We had home hospice care for my dad.

It was the best choice for him. No question about it.

[Justpat]

55. They are great.

My sister-in-law needed hospice care and I consider those people angels.

[nonconformist]

56. Not recent in the least, but in 1981 my grandmother was in a hospice

Where she died from cancer.

The hospice staff was WONDERFUL, just wonderful.

[greatauntoftriplets]

67. My mother was in hospice care for a couple hours before she died...

This was in late December. Despite her age, the illness was sudden and she lived only a week after suffering a heart attack.

It was Vitas Hospice and at Swedish Covenant Hospital on Chicago's north side. I know that Vitas has a broader reach than just Chicago.

They were awesome, acted quickly and compassionately, and have followed up with me to see how I am. Although my mother was Catholic, they did send a Jewish rabbi to be with us after they turned off the machines. His was a kind, gentle presence and we appreciated his presence.

I cannot say enough good about their caring. Good luck.

[barb162]

109. Vitas was the place this man had

that I know who died a few weeks ago. They had a person sitting in his room and caring for him 24 hours a day the last five days of his life in the nurisng home. They acted very quickly, within 12 hours I'd say, after notification the family wanted hospice.

[greatauntoftriplets]

125. They reacted even faster than that for us...

because my mother had very little time.

One thing that impressed me is that Vitas handled what could have turned into a tricky situation wtih great delicacy. I lived with my mother and her durable power of attorney for healthcare was in my name only -- as required by state law. I have a rather domineering older sister who had forgotten that she did not share that role jointly, and the subject arose while meeting with the Vitas case manager. My sister was involved in every step of the decision-making process, though I was the one who signed all the documents, including the DNR.

The case manager picked up very quickly on the tension over the power of attorney and handled it with extreme grace, explaining that there was no other option but to place it with a single person.

[Earth_First]

69. Hospice is about the greatest program ever!

My mother is a hospice nurse with Genesee Region Home Care in Rochester, New York. They are the most compassionate, caring folks that you will have the pleasure of working with.

[The Velveteen Ocelot]

70. Wonderful.

My mother died in a hospice a little over a year ago. The staff and nurses were very kind, and I know she went peacefully. They also told me what others have mentioned on this thread, which is that as the body shuts down the person is no longer hungry or thirsty; trying to feed and hydrate a dying person just causes unnecessary suffering. The hospice nurses knew just what to do to keep her comfortable.

[SPKrazy]

71. Good

The hospice people were very helpful in understanding what was happening with my mother as she went through stages of dying from ovarian cancer.

I would check with different hospices to see what their philosophy is as there might be a difference.

but if the person is dying, hospice is the way to go.

[DemExpat]

72. Houston Hospice was most excellent.

My Dad died at home from a brain tumor with their first class care - really, they could not have offered more in compassion, understanding, and loving care for my Dad, and helped us make tough decisions without pressure.

He stopped eating and then drinking after we took him off Haldol (to reduce swelling), and within a few days he was gone, without ever showing any signs of extreme discomfort except for the last hours when he went into the really heavy and rapid breathing - but by then he was unconscious.


DemEx

[Flying Dream Blues]

130. Houston Hospice is the one my mom just went with. I'm

so glad to hear good things about it!

[Cobalt Violet]

73. Not all hospices are alike. Those who can't pay get crappy care.

A family member died in an awesome hospice. Very homey, very caring.

I worked for a while in a terrible one in a nursing home. Terrible, terrible care. Down right neglect. I would be very worried an upset to have a loved one in this type of place. It's just any old room available in the nursing home among the repetatively screaming senile residents and an overworked and overstressed workforce who are giving such heavy case loads that every possible corner that can be cut is and then some. Like people laying in waste for way too long, people not getting feed or what they need at all.

[KBlagburn]

74. My Mom had home hospice when she died 1/12/06

She was 85 and died Jan 12 2006. She had hospice the last four months she lived. They provided most meds. She died on thursday a.m. On monday prior all meds were discontinued by her doc except morphine drops. We gave her water through a dropper until she started the "death rattle".
Her kidneys shut down more than a week before she died so she did not need water except to keep her mouth moist. We also used the foam lolipops.

Moma did not have any disease except congestive heart failure. She died mainly because it was her time and her body began to shut down. Hospice was a great comfort. They were there when needed. They were with us (her 7 kids, her 2 sisters, and the grandkids.) when she died. They let us know up front how the process would happen. What steps her body would take to prepare for death. When it happened we were fully prepared for the physical but not the emotional. No matter how much time you have to prepare, no matter how much info you have, no matter how much help you have, NOTHING can prepare you for watching your Moma die.

Hospice was wonderful. They gave her, her last bath after she died. They contacted the doc, the coroner, and the funeral home, so that we did not have to make those awful calls. And they stayed until the funeral home carried her away.

I cannot say enough good things about hopice.

They enabled us to spend our last days with Moma in peace, with family @ home. Rather than with strangers in a waiting room.

May God bless all who work with Hospice, thier work, and thier families.
This truly is a special calling from God.

Edit: My moma stopped eating Dec 26th, we had to spoon feed her and she would only take a bite. Her last two weeks she did not eat a full plate of food total. she would only take water from a dropper. But she did not become totally bed ridden until 3 days b4 she died.

[barb162]

112. Did hospice people come every day

toward the end or when they were called? May I ask if she was scared if that's not too personal? What you wrote about the emotional part is so true. There's an unreality or something about it. The Mother is always there and so central for us and when she isn't the mind has a hard time accepting it. It takes a long time to "heal" a Mother's passing. I am sorry.

[Beausoir]

76. Hospice made it less terrifying for me.

When my mother was dying, just having the hospice nurses within reach was very comforting to me. I know that sounds self-centered, but going through my mother's death was so frightening to me. Just being around capable and caring people who had "done" it before made me rest a little easier.

And they brought morphine and were not afraid to dispense it liberally and they encouraged us to keep mom as comfortable as possible with it.

[barb162]

115. I think I know what you mean

when my mom died the only thing I wanted from the doctors weree their assurances they could keep her out of pain. Without hesitation they said yes and I knew they meant it. They did. It's very frightening and also horrifying to think they might be in pain or you can't help them.

[Hamlette]

77. three recent experiences, all were excellent

the nurses and volunteers were wonderful. My dad, an aunt and an uncle were able to die at home with no pain. At the same time, another aunt died in a rest home. It was so much better at home. You could be with them always and still, some how, get on with your life, it seemed so much more natural.

All three basically died of "thirst" but none was thirsty. It appears to be painless, they say it is. I loved that hospice was there to answer our questions and tell us what to expect...how long it would be...what might happen...what to watch for.

I'd rather not see it coming, but if I have to, I wanna go like they did. At home with "strangers" doing the heavy lifting at the end.

(BTW, the volunteers were very liberal. We only had two, they would bring a book. Both were reading smart, liberal stuff. I talked to one, he was a Unitarian. Great retired guy. Apparently the Unitarian church were I am provides lots of volunteers to hospice.)

We also gave the bodies to science. The medical center came and picked them up quickly and returned ashes a couple of years later. There is a place in our cemetary for people who give their bodies to science. Even if you don't put the ashes there, they put the name on the memorial if you want. Not a bad deal.

[moc]

78. Wonderful experiences with my father in law in hospice in Baltimore

as well as a home hospice with my best friend in San Antonio.

[Geek_Girl]

79. my Grandmother is on Hospice

My mother lives with her and cares for her. Hospice nurses come once a week to check up on her. My grandmother even seems to be doing better. She gets up and walks around more often. But the hospice social worker told us that she'd have to be doing cartwheels before they took her off Hospice.

It's been great for my mom, the hospice folks have everything delivered to her house medication ect... They even found a foot doctor to go to her house and take care of her ingrown toe nail, since it's very difficult for my grand mother to leave the house.

I think my grandmother my actually live longer due to hospice care.

[renate]

80. hospice is very good

What a wonderful bunch of people.

This year I haven't had time to volunteer with them, but the hospice program at our local hospital is staffed with the loveliest, kindest people, both employees and volunteers. I've talked to the loved ones of dozens and dozens of people who died in hospice (I did bereavement follow-ups) and people were so grateful for all the support they got from hospice; they said it made things so much easier and more peaceful. In this program the nurses weren't always there for the deaths (which isn't surprising--death will sometimes come rather precipitously, depending on the person's condition, although sometimes the death process takes hours to days), but help was always available at the end of a phone line; just knowing that was a big help to the families.

Death is a natural, though of course very sad, part of life; the attitude in a hospital can sometimes be more like "let's see what happens if we do this, let's try to fight off the inevitable," and with hospice, the entire process (not just death itself but the phases before it, of coming to terms with what is happening) comes a little more naturally.

Good luck with whatever you decide to do. I'm sorry that you're having to make this decision. :hug:

[bush_is_wacko]

87. Three times in my family.

Hospice is wonderful. Those nurses are gifts from above. They are therapist,grief counselor,caregiver, and friend to the entire family.

[RUMMYisFROSTED]

88. With a few exceptions, unbelievably GOOD.

The better angels of our nature.

[hedgehog]

90. For what it's worth, I read recently that administering large doses

of morphine has been shown to actually prolong life when used to control pain. I wish I had the reference in front of me. It seems that the stress of fighting pain shortens a patient's life, but that by controlling the pain, the patients live longer and some are actually more alert and able to interact with other people.

[CountAllVotes]

99. I observed alright oh yes I did observe

My mother was DX'd with terminal cancer. She was very sick and I had to put her in a nursing home for the last 2 months of her life. Hospice was part of the picture, oh yes they were.

After she'd passed away, I went to pick-up her things and found a new "will" that was written by a member of the local hospice which left them $1,000 and also left the owner of this nursing home $2,000.

I went home and received a call from her best friend. She said it was only minutes after my mother had died that she received a call from the home and was told by the woman running it, "You know where to mail the checks don't you?" She was in on manipulating my mother's will after the cancer had spread to her brain! She had left her best friend some money of which suddenly was to go to THEM. :wtf:

I have been advised I have a legal case against hospice for what they did but I have not pursued it. It isn't worth it but I learned a valuable lesson: NO HOSPICE for ME or anyone I LOVE ever again! NO! Damn thumper crooks is what they are where I live!

Damn I am still so effin' mad about it some 5 years later I can barely think straight. I gave Hospice nor the nursing home NOTHING!

They were there quite often with their bibles and crap. It seemed when my mother needed them the most, they were slow to act.

I understand that not all hospice experiences are like mine were but where I live this is apparently typical as the same sort of thing happened to my neighbor next door when his father-in-law was dying.

They called and said to him after his father-in-law had died, "Can we come and grieve with you?" He told them to fuck off and I don't blame him one bit either.

Luckily Hospice care is different throughout America it seems. However, if it was me, I'd never go for Hospice, never. Let me just rot and die in my own home please is what I'd say.

Sorry about that if I offended anyone here, but damn, it makes me sick and no, I'll never get "over it". :puke:

:grr:

[barb162]

116. I don't blame you one darn bit. It is outrageous what they did.

Shockingly outrageous! I am glad you are telling this because you have every right to be angry, to tell this story and it will make other people cautious when they have to choose hospices. I do know there are some that are way better than others...I was asking around. I was also looking around the net on hospices recently and it is very difficult to evaluate them by their web info...it tends to all read the same. It becomes a word of mouth decision or a reference by a hospital social worker in many cases, usually when a family is under a lot of stress.

[CountAllVotes]

126. well I'd checked out the woman with the home going

I went there myself before having my mother transferred there from the hospital. It seemed ok - not many people and clean. That was the most important thing to her - clean as she was a clean freak.

I just could not believe the whole thing after she had died and I was pretty damn frustrated with those women that came around every day with the damn bibles. They were from the midwest and didn't know the accent of Californian's, which is one that tends to be very rapid speech patterns at times. She said, oh she is talking rapidly, this is a sign of psychological problems. I told her, no, we are Californian's and obviously you don't know people from the City and their way of speaking.

So anyway they got nothing. My mother's friend is still alive and she was afraid that the woman from that home would call her and ask her for the money that she was "left". I told her that if that woman calls you, REFER HER TO ME AND I WILL DEAL WITH THAT DAMN GREEDY BITCH.

Never heard a word. Dead. Gone. Mother = dead and gone.

I had a mass said for her as that was her wish. Fortunately the priest went and seen her several times during those last weeks as she was a devout Catholic. I was thankful for him anyway and did give the Church some money for saying her RIP mass.

I'll tell you, I still cannot believe it and so much time has passed now too.

:kick:

[barb162]

131. These things stay with you because it's such a traumatic event

and when people are so unnervingly greedy, vulturish at a time of trauma and grief...well, it's just too much. I remember how the nurse called me at home telling me very clinically my mother died and what should she do with the body. I couldn't quite process and was stuck on the first clause and she was done with the second clause and was waiting for a fast answer . That was decades ago.

[kath]

100. Kaiser's hospice care in the Denver area - not so good.

Kaiser *really* sucks out there. His oncology care was definitely sub-par - CO is a "tort reform" state, with a $200K or $300K cap on damages. Cancer patients are expensive, and Kaiser has apparently done the math, deciding that overall it's better to cut corners everywhere they can, then if the occasional patient's family sues for negligence and substandard care, well they can only get $200K, so Kaiser comes out ahead of the game by providing crappy care.

The hospice people weren't even competent at pain management. Nightmare. (father-in-law died of colon cancer)

[barb162]

117. And there is no central government agency that I know about

that evaluates hospices like they do nursing homes, hospitals, etc.

[CountAllVotes]

127. yes Kaiser does suck!

The year after my mother died of cancer, next was my sister the following year. Same diagnosis metastasized cancer, point of origin unknown. She had Kaiser and they told her she had less than 6 months to live. She did not opt for Hospice. She went on with her life best she could and had a whole bunch of chemotherapy via Kaiser for 9 long months. Why they did this given her diagnosis and chances for recovery were >5% is beyond me other than the dollar sign. :grr:

She fell in the bathroom about 8 months after the diagnosis. She ended up back in Kaiser and died there that night.

I did not blame her for not wanting Hospice. I guess seeing what happened to our mother the year before was enough for her too.

[fleabert]

113. wonderful.

my grandmother, who passed in 2003, volunteered with Hospice for several years. Anyone who had her by their side when they went died in peace. All I have ever heard has been positive. Many of my extended friends have had to use it, and speak highly, all over the country.

[REP]

118. My Experience was Bad, But It was 12 Years Ago. Still Fear Hospice.

My father died of bone cancer of the spinal column. Bone cancer is supposed to be the worst kind of pain, and it being in the spinal column is said to make it even worse. My father had had enough of needles, so he was on patches and pills. When his life was literally measured in weeks, his hospice workers limited his oral morphine because they feared he would be addicted. Yes, that would have TERRIBLE if the last three weeks on his life he was addicted to morphine and not in agonizing pain. I hope the thinking has changed since then (too late for my father), but that experience made me fear hospice. A lot.

At night, an ancient nun came and tried to convert my Jewish father. That, at least, amused him.

[elehhhhna]

122. Re; the ancient nun--

Hub's Grandpa was on his "deathbed" after a heart attack. We were told the priest was coming to give last rites. Stubborn old Swede HATES the church--I told hubs "I'll bet Grandpa rallies and throws the priest out." That's EXACTLY what happened. Vic went home from the hospital 5 days later and lived another 6 years!