Hospice care

Parent Cafe
1

<p>My father in law has finally been diagnosed with liver cancer, and is currently at home under hospice care.</p>

<p>His doctor told my brother in law, who lives on the other side of the country, that he will be gone in a matter of days, so he has come down to stay with his father.</p>

<p>Time is passing, and I don’t see the end in sight.</p>

<p>I’m not meaning to sound morbid, but really want to get some anecdotal, real life experience with length of hospice stay.</p>

<p>The whole family is putting a lot of things on hold and spending the time with grandpa, which we want to do, but we all have in our mind that he’ll be gone in a couple of weeks and we can tend to these other things that have deadlines in the near future.</p>

<p>Have any of you had parents, in-laws, aunts, uncles, who have been put in hospice for weeks, even months, and have lived a lot longer than the doctors expected? Have any of you had to move them from care at home to care in a facility while in hospice?</p>

<p>I’m so sorry to ask this, but I am worried about my brother in law, as he has no experience with this and I think he’s being a bit naive and listening to some bad information from caregivers.</p>

<p>Thanks for any help you can give us.</p>

2

<p>My experience has been that once hospice is involved, it’s usually not much time before the person passes away. The caregivers are usually very very knowledgeable.</p>

<p>Sorry your family is going through this.</p>

3

<p>In my experience – which is relatively limited – once a patient goes into hospice care, the end is quite near. It might be several weeks rather than days, however.</p>

4

<p>When I was in nursing school, I did a semester shadowing a hospice nurse. I believe to qualify for hospice, the prognosis must be that the patient is terminal and expected to go in 6 months or less. However, some of her patients had been on hospice more than a year, so yes, sometimes they do outlive the predictions.</p>

<p>I wouldn’t think a patient with end stage liver cancer would have much time, but of course, there is no way to predict with 100% accuracy how long a patient will actually take to pass away.</p>

5

<p>My father was at this great hospice given two weeks. He watched basketball games at night, said his goodbyes to many, many visitors, made up with everyone, and the hospice staff wondered if he was that ill. He died within the week. (We only regret we didn’t get him a martini even if he couldn’t really get it down.)</p>

6

<p>My mom received at-home hospice care. The hospice nurses and caregivers are wonderful people.</p>

<p>The doctor who first diagnosed the terminal cancer told us she had 6-9 months. She passed away at 8 months. Although the deterioration was evident during the first 6 months, she didn’t look or act any differently during the last month. However, without any obvious change that last month, the nurse in charge told me a couple of days before she died that she was nearing the end because she wasn’t eating well. She said diminished appetite is a sign that the body is getting ready to stop. </p>

<p>Best wishes to you and your family, Montegut.</p>

7

<p>I had my mother at my home with an aide in her last days. Yes, that is true about appetite. I didn’t know what was happening so busy trying to make her life good. Yes, it is not an easy passage for anyone, carers, children and folks in their last days. My best to you.</p>

8

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<p>In my experience as an ICU nurse, this is one hard concept for people to grasp. As a patient nears death, they begin to refuse food. I can’t tell you how many times I’ve had family members demand tube feedings, saying “She’s starving to death! She must be so uncomfortable!” I try to explain it like this: “Have you ever had the flu? Yes? Did you feel really hungry? No? So, you didn’t eat much, right? Did you feel awful because you weren’t eating, or were you not eating because you felt so awful?” They still often don’t get it. </p>

<p>It’s a normal human response (well, I’ve seen it in animals as well) to stop eating when your body is shutting down. It can indeed be a sign of impending death, and does not necessarily indicate discomfort or the need for intervention.</p>

9

<p>Sorry you are going through this. It is difficult. My mom died at her home last year from lymphoma after being in hospice for 10 days. The nurses should have a book/pamphlet to give your family that gives you an idea of what to expect. Some of the signs we saw with my mother in the last few days-sleeping more, eating less. She died within a day of when she really began having trouble swallowing. The aide that bathed her also noticed mottling on her legs the day before she died.
Hospice was helpful, particularly at her death. She died in the middle of the night and one call to the hospice brought someone to our home within an hour and the nurse took care of pronouncing her and helping to deal with the funeral home coming. Much better than having to call 911,etc.
My 91 year old MIL has been in hospice care for a year, however. She has dementia and they keep recertifying her. We have been told recently though that she is really declining. She receives hospice care at her assisted living/memory unit. So, length of stay in hospice can be very variable. Know of 2 families that were told that the end was near -people gathered but the person rallied. So, I believe that can happen. However, it sounds as though the end is near for your family member. All the best in getting through this difficult time.</p>

10

<p>Starting in July 2010, my mother had been in and out of rehab over the course of several months. After a September hospitalization, I was told to find her a placement where they would again try rehab, but where she could transition to long term care. Again, another hospitalization in November, and I was told that her heart failure was very advanced, she was physically failing, and I should consider hospice care for her.</p>

<p>She started hospice after Christmas, and no one thought she would last very long. She had already dropped to 80 pounds, and they discontinued her anemia meds and transfusions, which in the past would have quickly rendered her comatose.</p>

<p>She hung on until late April. She was down to about 60 pounds. I pretty much lived as if every day was going to be her last for those four months, going up every night to sit with her. They kept her very comfortable, but it was tough to see her deteriorate like that.</p>

11

<p>One of my grandmothers spent 15 days in hospice, which was the doctor’s prediction.</p>

<p>The other grandmother was discharged from the hospital on a Monday. She came home to “regular” nursing care while she (supposedly) regained her strength. On Wednesday, she was in so much pain that the nurse realized she needed morphine. However, Florida no longer allows docs to order narcotics without a physical exam of the patient…and GM’s doc wasn’t makin’ a house call. </p>

<p>The nurse on duty knew if GM went into hospice, the doc’s exam wouldn’t be necessary. So, hospice arrived before noon on Wednesday. At hospice’s request the doc phoned in the Rx for morphine. Mom picked it up and GM received her first dose around 3:00pm. She died at 7:30 pm. Total hospice time was about 8 hours. </p>

<p>I suspect the Rx slowed her heartrate and eventually led to her death. But, with a dx of pulmonary fibrosis, pulmonary hypertension, and CHF, she was very near the end, as well as emotionally and spritually ready. No one regrets letting her last hours be pain-free.</p>

12

<p>As Nrdsb4 says, to enter hospice you are supposed to have a prognosis of death within six months. However, it’s not uncommon at all for people to spend longer than that in hospice care – not that it happens with a majority of hospice patients, but a meaningful number. There are various studies showing that terminally ill patients actually live longer in a hospice care environment than in an acute-care hospital with aggressive treatment.</p>

<p>My father-in-law has been in hospice care almost a month. We are going up to see him in a few weeks, and no one has suggested we need to be there any sooner. (We made another pilgrimage to say goodbye in November, but he got better for a while.)</p>

13

<p>My grandmother was diagnosed on a Saturday and by the very next Thursday was gone. It was an easy passing (as easy as a passing can be) as she was at home, with hospice nurses visiting, and a lot of medication. She was alert and chatty until the last 24 hours when she just slept.</p>

<p>My best friend is a hospice nurse, she says her charges are 6 weeks or less.</p>

<p>I’m so sorry your family is dealing with this. It is never easy.</p>

14

<p>My dad had hospice care for four days before he died. My uncle had it for three years. Sometimes they just can’t guess how long it will be. I wish you and your family a peaceful passing.</p>

15

<p>Wow, thank you all so much for your comments. When my BIL first came down, he initially had it set up for Daddy to go into a nursing home. Someone convinced him it would be cheaper to have Daddy at home with hospice. I am glad this happened, because Daddy had always told me and my husband that he wanted to die at home, but we let our BIL handle things, as he had experience dealing with his MIL in nursing homes. </p>

<p>My FIL is paying sitters around the clock, even though I am happy to be there. He insists. He doesn’t want to bother his sons with taking care of him. Even with the sitters, we are trying to have a family member there at all times, if just for comfort. </p>

<p>I do believe that the boys are thinking too short term. We just lost our cousin, who had mesothelioma for 22 months. She was only given two months. However, she was aggressive in her treatment. I have had many cats that were given a short time frame to live, only to have them rally and last a couple more years. Although Daddy is ready to go, I would not be surprised if he hangs on longer than expected.</p>

<p>As for appetite, Daddy has not eaten much since Momma died two years ago. While in the hospital this last time, he hardly ate. Now that he’s been home, his appetite has been better. He has diabetes, but he is no longer on any of his diabetic medicine, and they are no longer checking his sugar levels. The doctor says his diabetes is not so severe that he could go into a diabetic coma and that cause his death.</p>

<p>Liver cancer, as I always understood it, is pretty much terminal. I’ve known people in the past whose doctors have just closed them up and sent them home to die when discovering a liver lesion. Our pastor was given two months last year with a diagnosis of liver cancer, and he died in two weeks. </p>

<p>Thank you for the information that the hospice guideline is six months or less. I think we were all operating under the assumption that hospice meant a week or two at the most. This will help us with planning and coordinating care. </p>

<p>Of course, we will continue to live each day with him as if it’s his last. I have driven my son from his college four hours away every weekend for the past month to visit his grandfather, so he can say his goodbyes. The doctor didn’t think grandpa would make it through finals, but here he is, still with us now. It will be hard for son to go back to school in the fall if grandpa is still around, but he will be glad that he has had this summer to be with him.</p>

<p>Thank you all again for your kind words and your advice.</p>

16

<p>We chose to put my mom in a hospice facility rather than having hospice come into the home. One of her doctors at the hospital thought she would live about 3 weeks in hospice. She was gone within 18 hours of arrival. The hospice doctor was wonderful … she showed me the physical signs that my mother was actively dying. I think she needed to be away from the hospital, which had been a very bad experience, and into someplace soothing (which the hospice was).</p>

<p>On the other hand, one of the patients at the hospice had been there 6 months and was not showing any signs of leaving this earth anytime soon. </p>

<p>Everyone is different. I wish I could tell you that if it will be sooner or later, but it’s just too complicated for an answer. My best to your family during this difficult time.</p>

17

<p>The technical qualification for Hospice it that the patient is thought to be terminal with 6 months or less left. My Dad was diagnosed with cancer that was untreatable and included liver lesions, it was known to be a slow growing type, but when doctors saw it (one surgery for what was thought to be appendicitis or on PET scans) their faces looked shocked by what they saw.</p>

<p>Dad lived almost 4 years and was offered hospice 18-12-6 months before he died, but he had no pain, his life was smaller, he drove shorter distances, but until a month before he died you would not even think he was sick. He had lost weight, maybe 30#, but that took him to a normal adult weight from his younger days.</p>

<p>About a month before he died he became quite jaundiced, but he still felt pretty good. The weekend before he died he was unable to sit up without pain which stopped his movement, yet once he was upright or laying down he was fine. We called Hospice on Monday (he was so annoyed, but we wanted the bed with the lift to it), they did paperwork Tuesday, brought the bed & the nurse Wednesday.</p>

<p>They gave him morphine Wednesday afternoon and told us that it was a small dose and he may sleep 24-48 hours and then awaken somewhat refreshed from the rest. Many people have morphine pumps with far higher dosages than he got, but he never woke up. He died Thursday, about 24 hours after starting the morphine.</p>

<p>His appetite was less, but not that much less, not like someone who was dying. The hospice nurses were all surprised he had gone that quickly. In discussing relatives visiting, they had suggested sooner was better than later, but no one thought he would die within 24 hours. The jaundice meant he was nearer the end, but even then it went on for weeks. It is just really tough to tell.</p>

18

<p>I was researching hospice statistics at work today for a project. The median length of service in hospice is 20 days. The average length of service is 64 days. Of course, it varies by diagnosis.</p>

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19

<p>So sorry you are going through this, montegut. Didnt you deal with your mother in a facility in Tx?</p>

<p>My dad was transitioned from post-surgical recovery to hospice last year. I cant recall exactly how long he lived after we transferred his care from palliative to hospice, but he only lived a little over 2 weeks from when he was first hospitalized.</p>

<p>I hope teriwtt chimes in. She was a hospice clergy for quite some time and ws a big help to me when I needed it.</p>

20

<p>I’m very sorry you are dealing with this. Hospice was wonderful with my mother. She stopped eating on a Monday and died 3 days later. Though it didn’t happen with her, I’ve heard many anecdotal reports that often the dying person will have one last really good day (or couple of hours), where they have energy and are alert.</p>