Hospice - any reason to NOT consider Hospice?

[Alexandra]

I have a family member who has advanced Alzheimer's. He was recently hospitalized and his doctor has suggested Hospice for him. Another family member (other side of the family)who is also an MD made hospice out to be a bunch of Dr. Kavorkians(sp).

At what point in the dementia continuum do you say the end is coming? His hospital physician and personal physician say he is on the last leg of his jouney but what if they are wrong?

What metric does one use?

[staceyobu]

Hmmm... I don't have a lot of experience with hospice... but I did a rotation with the local one for nursing school. Super caring people who helped provide emotional support, spiritual support, help with day to day care, and made sure they were getting the medications they needed. I can't think of a reason I wouldn't use it.

 

They also occasionally discharged people out of their care. People who were expected to die... but then got better.

[Sputterduck]

Hospice is a beautiful thing. I wouldn't hesitate to use it for a loved one.

[MeanestMomInMidwest]

Some medical doctors have a hard time with death (surgeons, especially, in my experience). Hospice has nothing to do with killing someone (a la the Dr. Kevorkian comment) but has everything to do with making the end of life if not pleasant, than at least not horrible and painful. In terminal situations, death is not the enemy. Pain, humiliation, and fear are the enemies. You will find these three in abundance in the hospital outside of hospice situations.

 

Contact your local hospice provider. talk to a hospice nurse. Find out for yourself what their philosophy is and what medications/interventions are available.

[BigMamaBird]

My experience with Hospice was that they were an amazingly compassionate group of folks, not just to the patient, but to the whole family.

[ncmomo3]

Super caring people who helped provide emotional support, spiritual support, help with day to day care, and made sure they were getting the medications they needed. I can't think of a reason I wouldn't use it.

 

They also occasionally discharged people out of their care. People who were expected to die... but then got better.

 

We had 2 of the most wonderful people care for my grandmother through hospice. They were amazing, both with her and our family.

Also, we were told by the hospice care worker that it does happen that they release patients from their care as they sometimes unexpectedly recover.

[StartingOver]

My mother was diagnosed with colon cancer 12 years ago. We went into remission and did well for 9 years. Then cancer was found to be in her kidney's, she had surgery, one was removed and dialysis was started, as the second was not functioning well. Then she had stents put in her heart. Then stents put in her legs. Three toes removed. Then part of her lung removed. Then they found pancreatic and brain cancer. She finally said enough was enough. We brought her home on hospice, she was kept comfortable and the family got to spend a wonderful 3 months with her, where she felt no pain and was very happy. All of her surgeries happened in the 3 months prior to hospice, she aged, and was tired, hopeless, in pain, miserable.

 

I would do hospice again in a minute, and hopefully much sooner next time. There is good in letting go. If there is no real quality of life..... Then I would.

Edited February 17, 2010 by alatexan68

[AK_Mom4]

The only problem with hospice and alzheimers is what to do if the patient doesn't die? Most hospice programs (and insurance) have a limited amount of time that the patient can stay in the hospice facility. It can be deeply disturbing for the alzheimers patient to have to transfer from the hospice program to a regular nursing home at the end of 6 months - much more so even than to a regular hospice patient.

 

Other than that issue, I think hospice programs are a wonderful thing.

[Quad Shot Academy]

If the time has come, hospice is wonderful. I echo all of what was said above. The only problem that I can think of is if the person or a family member is not ready to let go. The goal switches from trying to heal the person to keeping the person comfortable. Some measures like antibiotics for a bladder infection will still be taken, but heroic measures will be stopped. My Grandma was given 2 weeks to live and they discharged her from hospice care after about 6 months, as she is getting stronger. She lost her comfy bed, wheel chair and extra people that were caring for her.

:grouphug:

[tabrizia]

My Grandmother with alzheimers was on hospice twice. The first time she was on it for about 14 months before they took her off it, the second time about 6 months later she was on it for 4 months before passing. They were great with her, she and my Grandfather were living in an assisted living facility at the time and they also had a private nurse. My parents have had nothing but good things to say about hospice. My Grandfather was also on hospice from my Grandmother's death till his death 2 1/2 months later, and had no issues either.

 

My other Grandfather was also on hospice for 4 months when he was diagnosed with liver cancer that had spread to his lungs. My Grandmother has nothing but good things to say about them as well.

 

They will release the patient if they get better/improve, but with my Grandmother's case they tried to keep her on as long as possible and re added her with no problem the second time as well.

[Heather in WI]

Hospice has nothing to do with killing someone (a la the Dr. Kevorkian comment) but has everything to do with making the end of life if not pleasant, than at least not horrible and painful. In terminal situations, death is not the enemy. Pain, humiliation, and fear are the enemies. You will find these three in abundance in the hospital outside of hospice situations.

 

 

My experience with Hospice was that they were an amazingly compassionate group of folks, not just to the patient, but to the whole family.

 

:iagree: The hospice caretakers that helped my dad during his last few months were wonderful.

[Suzanne115]

My mother is taking care of my grandmother and Hospice has been such a blessing. They are caring, compassionate and very helpful. My grandmother has Alzheimers. They recently had to dismiss her because she is physically healthy right now. I wish they had some provision for helping patients like her on a more long term basis. She is physically okay right now, but mentally is a whole other story. Anyway, I would highly recommend hospice.

 

Suzannne

[Splungeman]

I am a hospice nurse. It is the best job I've ever had. :)

 

The Kavorkian thing plagues us at every turn. The recent "Death Panels" political furor has not helped us very much either.

 

Hospice's job is to keep the patient comfortable and provide as much quality of life as is possible under the diagnosis. If your family member were to fall and injure their hand, they would still go to the hospital and get it fixed, since it has nothing to do with the reason they went on Hospice. If your family member were to stop eating and drinking, and started to show the signs of the dying process, the patient would receive comfort care.

 

The people who misunderstand Hospice seem to think we just start doping patients up until they die, no matter what happens to them. Some patients (esp cancer patients) at the very very end will require constant doses of medication to control pain. I've also had patients who never even had to have a single dose of morphine.

 

But for the most part...it's all about maintaining comfort, dignity, and quality of life. :) I'd be happy to answer any questions you might have.

[Jean in Newcastle]

Hospice is not necessarily a separate facility. Hospice nurses can come to someone's home or to their regular nursing home or hospital. Hospice nurses and social workers are very sensitive to the wishes of the patient - they will not bully you into a DNR (do not resuscitate order etc.) but they will outline some of the decisions that people (including family when the patient is unable to make these decisions for themselves) can make and the possible ramifications.

[Pippen]

I had an aunt who diagnosed with Creutzfeld-Jakobs Disease. She was in late-stage dementia with this always terminal disease when they started hospice care. She was in an excellent facility and in her case I think hospice couldn't do much more for her as a patient than she was already receiving, but it helped the family a great deal. For instance, the close family members living nearby spent every possible minute with her in those last weeks that they could, but her final moments of life occured when I and a close family friend were there shortly after the other family members (including husband and kids) had left. My family would have been devestated, but the hospice workers had prepared them ahead of time that the patient often picks a time to let go when they are away, as if to spare them. Instead of being upset, it was evident to them that my aunt had chosen her last moments to be with people who loved her dearly, but were outside of her immediate family.

 

From start to finish, hospice was a blessing to our family.

[Beach Mom]

In my experience with both of my parents, hospice nurses are the most compassionate, kind, wonderful people around. We were able, with the help of hospice, to honor my parents' wishes to be at die at home. The nurses encouraged us, educated us and helped us so much.

 

Our two hospice experiences were a year apart, with two different sets of staff, but I cannot say enough wonderful things about these people. They were a God send to us.

 

We also had an inpatient hospice available if we decided we could not manage at home. Everyone I know who has had a relative at the inpatient facility has had wonderful support there as well.

 

For us, the hospice experience allowed us to focus on visiting with, loving and sharing time with our Dad and later our Mom with the support we needed as their medical situations changed on sometimes a daily basis near the end.

[jenL]

My experience with Hospice was that they were an amazingly compassionate group of folks, not just to the patient, but to the whole family.

 

This is my experience also. I'm sorry that you are having to make these decisions; they are difficult.

[gemrae]

I own an in-home care agency and we have worked with Hospice for years. They have been wonderful to work with and our customers and their families have loved them. We have had more than one customer 'released' from hospice after it was apparent they were improving. My understanding is that someone qualifies for hospice care when a doctor determines they have six months or less to live. Of course doctors aren't God and don't know for sure....things change.

 

You ask when not to work with Hospice. The only times we have seen customers not want to work with Hospice is when they are still wanting to do what they can to heal the disease or symptoms they are dealing with. When on Hospice, they will work with easing pain or other acute conditions that don't have to do with the terminal disease. For instance, they might treat shingles, but not cancer. They provide DME's for the home that can increase patient comfort.

 

If someone is not ready to accept a diagnosis that would allow them to avail themselves of hospice, they might not be ready. I'd encourage talking to others who have experience with hospice and definitely with a director or social worker from hospice. Take a look at the facility if that is an option. We work mostly with hospice in the home but some prefer to go to the facility itself.

[Splungeman]

My advice on finding the best hospice is to visit nursing homes and ask the nurses which Hospice is the easiest to get ahold of, has the quickest response time, and has the most continuous care staff. Some Hospices aren't as good as others. Just look around. Your physician may recommend one, but don't always go with their recommendation, as they might be working as a medical director for the Hospice they recommend.

 

The nursing home nurses will tell you which is the best...believe me. :001_smile:

[Aubrey]

Hospice is not necessarily a separate facility. Hospice nurses can come to someone's home or to their regular nursing home or hospital. Hospice nurses and social workers are very sensitive to the wishes of the patient - they will not bully you into a DNR (do not resuscitate order etc.) but they will outline some of the decisions that people (including family when the patient is unable to make these decisions for themselves) can make and the possible ramifications.

 

My sister works for a hospice--she does the fundraising side of things, so she sees a little bit different side of things than the nurses do, & I've learned a lot from her.

 

I think they're all non-profit; I think part of the point is that it doesn't cost the family anything.

 

From what I understand, their mission is to help families w/ end of life issues. This can definitely mean getting better, & having hospice care can help w/ that, in alleviating some of the burden on the family.

 

My sis recently worked to help a hs'ing mom who was dying find someone to care for her in the last 2 wks before she died. The dh couldn't take enough time off work to simply stay w/ her. An older dd would lose her college scholarship if she simply stayed home. Lots of people were helping w/ kids, but she couldn't give herself her meds, & volunteers/hospice nurses help w/ basic things like this.

 

They offer grief counseling; they work w/ ministers to offer spiritual counseling for whatever faith you ascribe to; they offer a list of things that you *might* want to think about, to get your affairs in order, from legal & spiritual things to relationships, last wishes, & videotaping people's stories for their children & g'children.

 

They can't do everything, but it's a great network of people who care & will try to help--I mean, bend over backwards to reach out & make a difference.

 

Oh, & another thing--they can serve as a kind of focal point for medical care, to ensure that information is connecting. When my dad was in ICU, drs & nurses would talk to us about his condition, but they'd talk to my grmother one day, my sibs & me another, then an aunt. Nobody knew the whole story, & when I mentioned something later, nobody even knew who had dad's medical records.

 

My dad died a few mos after he got out of the hospital, & my sis now knows that hospice could have helped him live a little longer--one of his biggest problems was the lack of communication described above--if not make a full recovery.

 

Contrary to the myths, hospice workers are *glad* for people to recover to the point of not needing them any more. They're human, & they really do want to help in whatever way they're needed.

[Splungeman]

Hospices are not all non-profit. I work for a private company Hospice. It doesn't really matter too much whether they are private or non-profit. Some are good and some are not so good. In either case, they accept Medicare (for now...Hospice and Home Health are on the healthcare reform chopping block). The non-profits sometimes have trouble finding funding to pay their staff. Otherwise it just depends on who is running them and the quality of the staff.

 

Like I said...just ask the nurses in your area nursing homes. They'll tell you which Hospice they prefer, which will probably be the one you'll want to go with.

[Splungeman]

Contrary to the myths, hospice workers are *glad* for people to recover to the point of not needing them any more. They're human, & they really do want to help in whatever way they're needed.

 

This is 100% true. I have had a couple of patients recover and then not need Hospice anymore. It's rare...but it totally lifts our spirits when it happens.

[G5052]

Usually they do not put a dementia patient into hospice unless their body is showing signs of shutting down. We often think of dementia as being about memory and relating to the environment, but it also affects other body functions including digestion, fluid management, breathing, etc. My mother has vascular dementia and is currently managing in assisted living with extra help, but if that question comes up down the road I would not do it unless the doctor can articulate specifically what is going wrong. You are right that people can go on for years in the later stages of dementia, but at some point it becomes a factor in the body shutting down.

 

We had an extremely good experience with hospice in a nursing home with my dad although I had to move heaven-and-earth to get him into that level of care because the relatives there were in complete denial, and I had to push it legally from across the country with the help of his doctor and his lawyer. The list of medical proof that his body was failing was overwhelming, and he died just a few weeks later.

 

It's a hard decision to make for a loved one, but I have no regrets. :grouphug:

[texasmama]

I experienced hospice with my mother and three of my grandparents and have nothing but good things to say about hospice and the services, kindness and lack of suffering involved.

[dirty ethel rackham]

I can't say enough wonderful things about hospice. We didn't get to use them with my dad because, although he had terminal cancer, he was responding to treatment. When his body had had enough, we didn't have enough time to call them in. My friend's husband died of brain cancer at age 59. Hospice was wonderful for them. They helped keep him comfortable and they offered excellent grief support services while he was dying and for a year afterward. With my mom, my only regret is that we didn't get hospice in sooner. I had to convince the doctor that it was time. They moved my mom to a hospice wing in the hospital. It was wonderful. The nurses were so caring, to my mom and to my family.

 

ETA: I second the idea of looking around and getting recommendation. If you get in-home hospice, you want to find out how responsive they are. My great aunt died this summer. Her hospice nurse was terrible - definitely did not understand the scope of her job. She acted like a hospital nurse instead of hospice. She left right after Aunt Kay died, rather than sticking around and tending to her loved ones and helping them deal with the situation.

Edited February 18, 2010 by dirty ethel rackham

[Renee in NC]

Usually they do not put a dementia patient into hospice unless their body is showing signs of shutting down. We often think of dementia as being about memory and relating to the environment, but it also affects other body functions including digestion, fluid management, breathing, etc. My mother has vascular dementia and is currently managing in assisted living with extra help, but if that question comes up down the road I would not do it unless the doctor can articulate specifically what is going wrong. You are right that people can go on for years in the later stages of dementia, but at some point it becomes a factor in the body shutting down.

 

 

 

This is true - my grandfather lived for years with his dementia. At the end he could no longer swallow and eventually he just quit breathing (with his wife, 2 daughters, son-in-law, and my brother by his side.) It was obvious when the end was coming - hence the family at his bedside. I was thankful - I got to tell him good-bye (as did one of my dc.)

 

Hospice came to his nursing home (he was there for almost 10 years) and kept him comfortable in his last week or so (when it was obvious he was going to go.)

 

ETA: Hospice did not offer any grief counseling, but it wasn't something anyone needed or wanted. We just needed each other and their pastor (who was a close friend.)

Edited February 18, 2010 by Renee in FL

[lynn]

Hospice is a wonderful organization. Allowing people be able to be home during their last days, surrounded by loved ones and if this is not out of place but to pass on as peacefully as possible. They send nurses to take vitals who are so caring and compassionate and they will send counselors, ministers or whoever the family requests. My dad was thankful for the person they sent to talk with him while waiting for my grandma to pass. I think he was a minister and was there to just sit and listen to whatever my dad had to say.

[LauraGB]

My experience with Hospice was that they were an amazingly compassionate group of folks, not just to the patient, but to the whole family.

 

:iagree: I have not experienced anything other than reason and true, heartfelt compassion with Hospice workers. It is a tough job (being strong and the voice of reason during such a difficult time) and the people I've experienced due to family trauma and the people I know who work that tough job are amazing.

[kalanamak]

At what point in the dementia continuum do you say the end is coming? His hospital physician and personal physician say he is on the last leg of his jouney but what if they are wrong?

What metric does one use?

 

Falls, infection, aspirations, weight loss, precipitous decline, other factors like CHF or anemia or kidney failure. Has this person been in and out of the hospital? Is the person's life full of suffering and one more round of antibiotics just saving them for more suffering? Are they fighting miminal things like bathing or changing soiled undies?

 

Usually, except in dysfunctional families, there is a general feeling of "enough is enough" and people embrace hospice. When the spouse or the kids say "Pops would NEVER want to live like this" then a person can be put on "comfort care".

 

Why not ask the docs their reasoning? Sometimes the patient has spoken to the doc in the past about what they think of their memory loss.

[kewb]

I have had nothing but a positive experience with Hospice. Caring staff makes all the difference at the end of life.

[Splungeman]

At what point in the dementia continuum do you say the end is coming? His hospital physician and personal physician say he is on the last leg of his jouney but what if they are wrong?

What metric does one use?

 

There are a lot of factors. Loss of appetite and low food intake is one. Eventually dementia patients just stop eating and drinking. Some families then decide to put in feeding tubes, which is often a source of conflict within families, because if the person is unable to eat, they are usually unable to speak or respond in any way at all. So they have zero quality of life.

 

Sometimes the doctor is going with lab values, vital signs, and how fast the patient has been declining recently. They sort of think, "Okay...assuming they keep up this rate of decline, they should not survive another 6 months." It's nothing but an educated guess and they have about a 50% successful prediction rate. Some people decline and then level off for awhile. Others increase the rate of decline and are gone sooner. A lot of factors to consider.

 

If you ultimately decide on Hospice, I suggest contacting all concerned family members and explaining Hospice to them, as well as describing the reasons you have made the decision. A lot of times there is a sister or cousin who lives far away and who shows up at the last minute to disrupt the family by demanding to know why more isn't being done to "save" the person on Hospice. Usually this is motivated by guilt and ignorance, since these people haven't been around and haven't seen the decline themselves. So...make sure any distant family members (who might be potential last minute doubt instillers) are well-informed of what is happening and why. It will save you a lot of potential family drama.

 

Best wishes to you and yours.

[Danestress]

We just went down that road with my father in the fall. The nursing home suggested Hospice for him. Honestly, I thought he could live for many more years (though obviously not in a condition most of us would hope for) despite AD. He really was in bad shape and also had a neurological problem that caused him to fall, break bones, and just deteriorate. He could get into a wheel chair without the help of 3 aides and a big machine that lifted him. Even so, some people do live to be very old with AD. But not my father. He was dead within a month. I was not prepared, but I had at least started to prepare because of Hospice.

 

Hospice really made the experience better. They helped in many ways. But when you sign up with Hospice, you are saying (best I could tell) "We are no longer trying to cure this, but are trying to make him comfortable." We would have tried to cure a urinary track infection, of course, or set a broken bone. But when we went with Hospice, we had to have a talk about letting go of trying to turn back the dementia. We talked about whether to take him to the hospital for more minor things. Transporting a patient with AD to a hospital is very very traumatic for them, and he was frail, so this was a legitimate question.

 

When he started to have trouble swallowing, he aspirated a tiny bit and they thought at first it might be pneumonia. Hospice talked to us about whether to treat that, and subtly discouraged it, telling us that if you are going to die, pneumonia is not a bad way to go. One of my sisters was appalled at the idea of not treating a disease that can kill you but is easily treated. The other was more willing to let him go. As it turned out, we didn't have to make that decision. He really did just stop being able to swallow.

 

But if the primary people in your relative's lives are really split on how to handle these kinds of issues, they need to talk about that. And in fact, Hospice helps with that talking, but they have to be ready to have the discussion. In order to refer someone to Hospice, a doctor has to make a determination that the person likely has less than six months. That's a hard thing to say with dementia. AD does statistically shorten lives, and when a person is falling and breaking bones, it's much worse. Still, it's hard to know. I didn't think there was any reason he wouldn't live much longer, but the doctor saw what I couldn't. Hospice really helped, particularly when my Dad just totally stopped swallowing even liquids. It was so hard to watch. The primary decision maker was firm about not putting him on a feeding tube, but the rest of us needed to work that through with calm, professional people. The hospice social worker was just so thoughtful, so kind, so insightful. It made all the difference.

 

But really, it was very painful to have to start talking about death, about the death process, about making a decision to allow my father to die. Hospice does sort of make those discussions happen.

[leaird]

My mother passed away last June from Pancreatic Cancer. I cared for her in my home up until the end. We used Hospice for the last 1 1/2 weeks or so. It was wonderful to have someone to call if you had questions or concerns no matter what time of the day or night. They provided us with a medicine kit and advised us how much pain meds to administer. When she needed something that wasn't in the kit, they had it overnighted to our house. They even sent someone out to give my mom sponge baths and change her bedding. The services they provide are not only for the patient. Hospice emplys counselors and Chaplains who come in to talk with the famly as well as the patient. They were especially concerned about my how my children were handling everything. Once your loved one passes, your family is entitled to counseling for a year with Hospice. I never took advantage of that service, but my father did. All of Hospice's services were free. They were all so caring, loving, and supportive. I would not hesitate to bring Hospice in again if I ever find myself in the same situation.

[ourjourneys]

:iagree:Very loving and caring... we experienced them when my grandfather passed away. They were understanding about family needs and feelings. It meant lot to us. Death is going to be a hard thing to deal with no matter who is caring for the loved one, but for our family it was relieving to know he was truly being cared for, not just another patient on the list.

My mother passed away last June from Pancreatic Cancer. I cared for her in my home up until the end. We used Hospice for the last 1 1/2 weeks or so. It was wonderful to have someone to call if you had questions or concerns no matter what time of the day or night. They provided us with a medicine kit and advised us how much pain meds to administer. When she needed something that wasn't in the kit, they had it overnighted to our house. They even sent someone out to give my mom sponge baths and change her bedding. The services they provide are not only for the patient. Hospice emplys counselors and Chaplains who come in to talk with the famly as well as the patient. They were especially concerned about my how my children were handling everything. Once your loved one passes, your family is entitled to counseling for a year with Hospice. I never took advantage of that service, but my father did. All of Hospice's services were free. They were all so caring, loving, and supportive. I would not hesitate to bring Hospice in again if I ever find myself in the same situation.

[Tap]

I have had great experience with Hospice, but my mother wouldn't allow Hospice in her home for the 4 people she cared for to their deaths (her FIL, her dh, her sis, her mother). She didn't want to worry about the condition of her home, or to feel like she was being judged. I tried to reassure her, but she refused the help.

[Carol in Cal.]

Hospice keeps people comfortable in their projected last few months of life, but they have to give up on curative measures.

 

That can mean that hospice is great--hospice nurses visit your house or whereever and then call the doctor and tell him what pain relievers to prescribe, and he will do that. They help you know what it's going to be like when someone dies, and to make that easier. They help you with the right equipment, things you never even knew existed. They provide respite care. They offer grief support groups afterwards.

 

But it can also mean tough choices. What if the patient gets a bladder infection? Sometimes they can't get antibiotics without getting out of hospice. Tough choice, that one.

 

I don't know how this plays into dementia cases.

 

Generally my experience with hospice has been extremely positive, but with the proviso that you have to be ready to come off of it if necessary.

[Joanne]

Hospice was a NIGHTMARE with my fil. They convinced my mil to "just bring him home" from the hospital and "let him die in peace". Um, yeah, but if he goes home after the hospital, he couldn't go into the nursing home and have it covered. Big Surprise! Hospice's "help" consisted of 2 hours a WEEK of help! The man weighed over 200 lbs and I was supposed to turn him myself??? I was informed that I needed to put my baby ds and 2yo dd into day care because after all, "It's the rest of fil's life, not theirs". I was so angry I walked out on the meeting and told them, "You created this problem, you fix it". Dh could not be there 24/7 and mil was useless and fil got very little care the last two weeks. He COULD have been in the nursing home (insurance was paid) and could have had MUCH better care! He could have been hydrated and not die of thirst. He could have been comfortable. I HATE Hospice and I hate the guilt trip they pull on people. We got smart with mil--she'd been on Hospice a zillion times until they figured out she was scamming them AGAIN and was merely addicted to pain pills. So, she'd go through detox and then we'd do it all over again a year later. And again... I washed my hands of the entire thing since Christmas--wouldn't go to any meetings to be informed of all I was "supposed" to be doing. Nope, not going there. I throw out all the beggin/threatening letters from them. And trust me, they will BOMBARD you will calls and letters saying how much they did and what you owe them. They can go jump in a lake and I'll not be there to deal with the end of life issues from their drowning!

 

Respectfully, the above doesn't sound like a *hospice* problem at all.

 

Isn't hospice a business? Do they not deserve payment for service?

Edited July 5, 2010 by Joanne

[Joanne]

I have a family member who has advanced Alzheimer's. He was recently hospitalized and his doctor has suggested Hospice for him. Another family member (other side of the family)who is also an MD made hospice out to be a bunch of Dr. Kavorkians(sp).

At what point in the dementia continuum do you say the end is coming? His hospital physician and personal physician say he is on the last leg of his jouney but what if they are wrong?

What metric does one use?

 

 

I am considering hospice as one of my practicums or my internship hours.

 

I have to ask about the critical MD on the other side of the family. Is he in general contrary and difficult or show other areas of emotional lack? Or is his response to this out of pattern/character?

[NoPlaceLikeHome]

Some medical doctors have a hard time with death (surgeons, especially, in my experience). Hospice has nothing to do with killing someone (a la the Dr. Kevorkian comment) but has everything to do with making the end of life if not pleasant, than at least not horrible and painful. In terminal situations, death is not the enemy. Pain, humiliation, and fear are the enemies. You will find these three in abundance in the hospital outside of hospice situations.

 

Contact your local hospice provider. talk to a hospice nurse. Find out for yourself what their philosophy is and what medications/interventions are available.

 

:iagree: I would much rather die at home then hooked to multiple tubes in an unfamiliar place:(

 

I also would consider no extraordinary interventions if I myself had severe dementia or other terminal illness such as hospitalizations, surgeries, IV's, tube feedings, testing, and antibiotics IMHO as an RN. I realize that many disagree but all of these interventions are artificial and only prolong the inevitable IMO. Of course, I would want full comfort measures, pain medications, and assistance with feeding/drinking and all activities of daily living if it were me.

:grouphug:

[OnTheBrink]

I've never had an occasion to use hospice care for a family member, but, I do see hospice care notes in my job. I was impressed, honestly, with what all hospice does. Beyond just making sure the patient is comfortable, they still make sure the pt has all the meds they're supposed to have, they notate the pt's emotional state, whether they have visitors, whether the family has spiritual support, if appropriate. From what I've seen of the patient care notes, hospice does a LOT for the patient and family, and I've never seen any mention of a Kevorkian-type mentality or treatment. If I had a family member who was terminal and close to the end of their lives, I'd use hospice care without reservation.

[Miss Marple]

Our experience with Hospice was very positive. I would imagine, though, that each program might vary. The few times I've experienced Hospice, the main criterion was that the patient had less than 6 months to live. This had to be substantiated by the attending physician and Hospice had to concur. They were correct.

 

Hospice had no set routine. It based its help on the ability of the patient and the patient's family's ability to help with the care. In the case of my grandmother, she was in a nursing home until she had another bout of pneumonia. She went to the hospital and from there to a wing of the hospital which was "hospice". The nurses and physician were the most caring, comforting folks I have ever encountered in a medical setting. My grandmother slowly went into a coma and never returned. They administered morphine for any pain she might be experiencing but could not communicate about. Her vital signs were monitored and they would indicate whether she was experiencing pain or discomfort. She had no IVs, but we were allowed to feed her ice chips when she was conscious. She passed away with us beside her bed. After we left the room, the nurses took care of the funeral home arrangements, transport of the body, etc. I cannot tell you how much of a relief it was to us - my mom was a basket case and not able to handle arrangements. My sister and I were from out of state and didn't know what needed to be done. So the nurses were invaluable!

 

After experiencing hospice firsthand, I have a respect for those who work in the field that I never had before. I simply didn't know what it entailed. They were, for us, angels on earth helping us get through a sad time as easily as possible. Just having them take the burden of arrangements off our shoulders allowed us to spend time with my grandmother and to grieve without added stress.

 

I hope you have a wonderful hospice experience, but, like I said before, I'm sure it varies from place to place.

[NoPlaceLikeHome]

Hospice was a NIGHTMARE with my fil. They convinced my mil to "just bring him home" from the hospital and "let him die in peace". Um, yeah, but if he goes home after the hospital, he couldn't go into the nursing home and have it covered. Big Surprise! Hospice's "help" consisted of 2 hours a WEEK of help! The man weighed over 200 lbs and I was supposed to turn him myself??? I was informed that I needed to put my baby ds and 2yo dd into day care because after all, "It's the rest of fil's life, not theirs". I was so angry I walked out on the meeting and told them, "You created this problem, you fix it". Dh could not be there 24/7 and mil was useless and fil got very little care the last two weeks. He COULD have been in the nursing home (insurance was paid) and could have had MUCH better care! He could have been hydrated and not die of thirst. He could have been comfortable. I HATE Hospice and I hate the guilt trip they pull on people. We got smart with mil--she'd been on Hospice a zillion times until they figured out she was scamming them AGAIN and was merely addicted to pain pills. So, she'd go through detox and then we'd do it all over again a year later. And again... I washed my hands of the entire thing since Christmas--wouldn't go to any meetings to be informed of all I was "supposed" to be doing. Nope, not going there. I throw out all the beggin/threatening letters from them. And trust me, they will BOMBARD you will calls and letters saying how much they did and what you owe them. They can go jump in a lake and I'll not be there to deal with the end of life issues from their drowning!

 

:grouphug: Oh dear, what an awful experience. I think it was someone who gave you bad advice and perhaps a bad hospice itself and not hospices in general:(

 

From nursing perspective, I was always taught that near the end of life it is natural to not want to or be able to eat or drink and that dehydration is actually a blessing for the patient at the end of life and that one is not aware of it. :grouphug:

 

Hospices will also care for people in nursing homes. I think you were given bad advice to bring him home in that case:(. Plus I have seen hospice provide around the clock care in nursing homes when the end is near. It sounds like this was a bad hospice IMHO.

 

As for your MIL it sounds as if hospice was possibly ordered inappropriately unless she has a terminal condition. If she truly has issues with pain, then her pain should be treated from what I have learned even if there are addiction issues. Has she seen a pain specialist?

 

I am sorry to hear of your bad experiences since I have witnessed hospice being a blessing to many people at home or in nursing facilities:grouphug:

Edited July 5, 2010 by priscilla

[kalanamak]

They convinced my mil!

 

Who is "they"? Hospice is a concept, not an individual. Many organizations are involved in doing hospice work. I urge you to evaluate each situation rather than paint a grim picture of 1000s of people who do this work. The majority of people doing hospice are dedicated people, who have helped many. Instead, I would that you report this particular group to the BBB, to your doc, to the licensing board in your state, etc.

 

Hospice helped my mother die with simple ease with as few as possible strangers (one) in her house.

 

I appreciate that in times of illness it is hard to rally and say "sorry, this is not working, he needs a higher level of care" and stick to it. It sounds like it was poorly planned and executed, and what he needed was a brick and mortar hospice, like the one that handled my brother's very painful death 24/7 while allowing my SIL to stay with him the whole time, Aida on the CD.

 

I'm sorry for your situation:grouphug:, but aim your spears at those who deserve it. If there care was this bad, you SHOULD go to the state board. There are hospices that are doing "rackets" of providing all the extra goodies, and billing, for people who are months from dying. After the 6 months, then it is "well, from 6 months from NOW they will be gone", and the families love the extra goodies. So, there is a spirit of oversight and investigation going on. :grouphug::grouphug:

[Moxie]

Hospice was a NIGHTMARE with my fil. They convinced my mil to "just bring him home" from the hospital and "let him die in peace". Um, yeah, but if he goes home after the hospital, he couldn't go into the nursing home and have it covered. Big Surprise! Hospice's "help" consisted of 2 hours a WEEK of help! The man weighed over 200 lbs and I was supposed to turn him myself??? I was informed that I needed to put my baby ds and 2yo dd into day care because after all, "It's the rest of fil's life, not theirs". I was so angry I walked out on the meeting and told them, "You created this problem, you fix it". Dh could not be there 24/7 and mil was useless and fil got very little care the last two weeks. He COULD have been in the nursing home (insurance was paid) and could have had MUCH better care! He could have been hydrated and not die of thirst. He could have been comfortable. I HATE Hospice and I hate the guilt trip they pull on people. We got smart with mil--she'd been on Hospice a zillion times until they figured out she was scamming them AGAIN and was merely addicted to pain pills. So, she'd go through detox and then we'd do it all over again a year later. And again... I washed my hands of the entire thing since Christmas--wouldn't go to any meetings to be informed of all I was "supposed" to be doing. Nope, not going there. I throw out all the beggin/threatening letters from them. And trust me, they will BOMBARD you will calls and letters saying how much they did and what you owe them. They can go jump in a lake and I'll not be there to deal with the end of life issues from their drowning!

 

Wow, I'm so sorry for your bad experience! My sister is the head of Hospice for a large city and I can't think of one time that she has told me that they have encouraged someone to go home. It is usually the other way around; family want to take Mom home but the doctors think that her level of care would be too much for them.

 

Hospice isn't just for the sick and dying; it is for the whole family. There are lots of meetings with the family so everyone is comfortable. No one works for Hospice for the money or the perks. The doctors and nurses have a calling to help families during a time of terrible stress.

[EKS]

A very close friend of mine died at the age of 39 of breast cancer. I was extremely fortunate to be able to be with her as she made the transition to hospice. My friend was very concerned that deciding to move to hospice was an admission of defeat. However, one of the first things that the visiting hospice nurse told my friend was that she had known many people to go on hospice and then get better and go off. While she might have been saying that primarily to make my friend feel better (which it did), I'm sure there was some truth in it as well. I do know that my friend continued to have chemotherapy after she went on hospice.

 

If he goes on hospice and the doctors are wrong, that's just the way it is. Hospice is a wonderful thing. People generally start considering hospice too late. If your family member is eligible for hospice, I would go for it. Hospice is not only for the dying--it is also for the ones remaining.

[NoPlaceLikeHome]

Well, it was quite awhile ago and I'm just tired of the whole thing. The "they" I spoke of were the hospice nurses here. My mil has now passed away, so her pain pill addiction is over. Our hospice will provide "care" in the nursing home but guilts the family over and over NOT to put the elderly into the nursing home. I was asked for experiences with hospice and I gave mine. Just wanted to let others know that it is not always the rosy picture so many envision. It was not for us.

 

This is very true. Just as there are good nurses and doctors, there are not so good ones. The same goes for medical facilities:(.

[kewb]

My experience with Hospice was that they were an amazingly compassionate group of folks, not just to the patient, but to the whole family.

 

This was our experience as well.

[Alexandra]

I am the OP and the individual that I referred to did not qualify for hospice and seemed to have a little improvement after that bad spell in February. I appreciate all the great feedback and based upon what I read would seriously consider that path if the MD suggested it at some point in the future.

Thank you!

[Denisemomof4]

I brought my mother home to take care of her when she had end stage Dementia along with a host of other diseases. She died a year ago today. She was only able to feed herself, and even then, only for a short while after she moved in. Even so, I really didn't know if she truly was in the final stages, but several people confirmed she was.

 

How is your family member's appetite? Are they drinking enough? Do they get frequent infections? In the end they lose their appetite, have a hard time swallowing, choke, don't drink much, have frequent infections.

 

When we finally did make the decision to put my mother on Hospice, I was terrified. To be honest, though, they treated my mother more tenderly and were METICULOUS with her care. The support they gave me was impressive. They were more helpful with my questions than her doctors were. Most of them were VERY compassionate. One aide sat with me and cried with me and for me as she watched me struggle to keep going. Hospice was the best thing that happened to allow my mother to die a peaceful and comfortable death. I wish I had known to put my father on Hospice - we never really knew how sick he was. Oh how I wish we had done this for him. He had so much fear. He suffered. Hospice would have made such a difference.

 

I watched three people die in the past few years. Two had Hospice and one didn't. My poor father suffered while the other two died a peaceful and comfortable death.

 

I'm very sorry about your family member. :grouphug: