Stage IV members ONLY hospice discussion
Comments
-
K-LO,
It sounds like you have made a good choice. And thank you for sharing it with us. I think there is the idea that once hospice is involved, it moves quickly. But it is great to know that isn't the case. I am glad you're doing well and you seem so comfortable with your decision. Keep us posted!0 -
Thanks, K-lo for your response. I guess maybe what I wasn't getting is the fact that if you can't have hospice until you're done with treatment then how can you call them in sooner. Maybe some people done with treatment don't call hospice as soon as they are done. They wait until they are not well physically and near death which is why they go soon after hospice care.
One of my friends from journaling...the only stage 4 person besides me just called in hospice....non small cell lung cancer...and he has been living a pretty well without treatment for the past year. He is deteriorating rapidly now though so now has hospice care. I guess in his case he could have called them in sooner if he wanted to but maybe didn't see a need since he was doing ok. ...probably at your level of functioning. If nothing else I think it would have been better if the hospice care team got to know him sooner.
I'm still reeling from the fact that Soleil went so quickly. I don't understand how one can have the energy for a Hawaii vacation one minute and be gone the next....unless she wasn't doing so well in Hawaii and I hope that's not the case.
A while back my daughter expressed to me that she would not want me to die in our house. But there are not any hospice facilities near enough. Each of the local hospitals have hospice rooms however I'm sure you can't stay there for six months. I think what they're for is for those cases that end up in the hospital in a medical emergency and then are told there is nothing that can be done and they then transfer to the hospice room. Personally that would be my preferrence but not sure I could finagle it.
An aside...I'm really sorry I didn't get off the phone when my daughter called and I waved to you at the Chicago conference. It was great to get to see you at least but it's too bad we never connected while there. I wish there had been more time for socializing.0 -
I think of hospice as an approach instead of a place. I heard a great discussion about it on public radio a few months ago; I'll try to find it. It was about families getting a loved one in hospice only to have him or her, as has been said above, die a week later. The point being that the treatments were probably beyond helpful at that point and energies and expectations were led down the wrong path. I kind of think of hospice as retirement from the job of doing chemo and scans and showing up at clinics and a time to relax and use time in happier ways.
I trust my health care team, and I believe they want me to have great QOL. But they also want the science and treatment to work as long as possible. This joke from a NYTimes article several months ago comes to mind sometimes when I think about how I'll know when it's time:
Q: Why are coffins nailed shut?
A: To keep doctors from administering more chemo.
0 -
My mom who had a spinal cord injury and diabetes, and who was in a nursing home for five years before dying in her early 90s, went into hospice care because they thought she had less than six months to live. She was doing so well that they took her out of hospice care ( all of this in the same bed in the nursing home, with her same aides, so she wasn't disoriented or scared) and then two months later she went back into hospice care. It seems easier to choose hospice if your life has slowed down anyway. But I think hospice is great based upon my moms experience, and when my time comes, I plan to choose it sooner rather than later. Life is good, and a good death is a key part of life.
0 -
Surly, I have heard that joke said many a time in reference to one of the oncologists in my community. His standard reply to those who challenge him on his "guidance" with regard to ongoing chemo reportedly has been that he doesn't think it is his role to "take away hope." How about hope for dignity, for peace and comfort, for being able to come to terms with the end of life and know that choosing a certain quality of life doesn't mean "giving up"?
With regard to choosing hospice "sooner rather than later"..... I know that many hospice organizations often hear from patients and later bereaved family members that, knowing what they knew then, they would have chosen hospice earlier to get the most benefit from hospice care and to focus on acceptance and sharing time with loved ones rather than spending time pursuing treatment. Of course, it is often easier in retrospect to know what might have been a better course of action. I think part of the answer in coming to a decision about hospice/comfort care is being very clear about what your personal values are and being true to them to the best of your ability, part may be having a relationship with your doctors that is grounded on trust and being able to say to those doctors what your goals are (as in "I don't want to have chemo up until the time I draw my last breath"...or "I want to do any and every thing possible regardless of what the odds are until I just am not able to do more"), part may be being attuned to how your own values and wishes may change over time and not allowing yourself to remain stuck with a treatment approach you once thought you wanted to pursue. As usual, coming to a decision about the kind of care you want to receive is often a complex process, with far reaching implications. We would like to think that we will know, intuitively or otherwise, when the right time might be to make a certain decision, but that is not always the case. And as we have learned in the many experiences we have had while living with cancer, many things we figure out along the way or later than we might have wanted. Ultimately, respectfully living and respectfully ending life with cancer may have at least one thing in common--you strive to do what is in accord with your values and wishes and hope that others will offer the support you need in making the choices you wish to make.
0 -
Hospice care can be at any "nursing facility" I believe. There is one in my tiny home town. But care there has been questionable, rumor has it they sedate folks...
I question myself If I want to die at home or not. I need to ask my boys when the time comes. I have been watching the Big C on showtime and Cathy the main character moved to hospice last week. At first she was happy to be there...but then it became a little depressing for her. What the hell of course it is depressing!
I read a few books on Hospice. Death and Dying. I wanted to know what to expect...What I found was everyone was different. Our needs and our wants.
0 -
hi ladies. 2 yrs ago my mother-in-law moved in with us with brain cancer. palliative care first then hospice. personally, I loved palliative care. she had no choice but to go into hospice. couldn't walk, eat, drink, and a lot of pain at the end. hospice kept her drugged and comfy. both provided us with all equipment we needed. I just hope I die like some of my friends with cancer died. lived pretty strong up to the end and the end was really quick. actually took people by surprise quick. Hospice is just hard on everyone when it goes on for a long time. That probably sounds bad, but I don't mean it in a bad way. Just difficult for the patient to be so uncomfortable for so long and hard for people to watch. good luck everyone
0 -
Oh boy, oh man, uh oh. I have my PCD making a house-call tomorrow. I hope my complaints are worthy!
0 -
My dad was moved into hospice when he was dying of chirossis. I thought he might die within days but he held on for a few weeks. I guess its like you mentioned, they are moved into hospice too late.
I have decided to utilize both PC and H when the time is right.
thank you for starting the topic
0 -
This is such a difficult and personal topic. I can guess how I would feel about this, but until I'm actually in that position (hopefully many, many years from now) I can't really say. I want to fight as hard as I can until I can't fight any longer, then I want to go peacefully into that dark night. I guess I want the best of both worlds.
0 -
Dear Kathy,
This discussion, and your information is really helping me with processing. I am being successfully treated at the "moment" on yet another chemo, but it too will fail. I have been wondering when we are allowed to start pondering the point where the chemo isn't what we want. I wish I had a group of metastatic sisters just for this discussion alone. My Onc is fabulous and helpful and optimistic. But I finally laid it all out there this week, asking if I am in denial as I try and figure out how to plan my future life in this constant state of imagining death. It's a quagmire for an eternal optimist. To truly be ready, and to work toward acceptance and a good and peaceful death on my own terms, as much as possible, means I need to be doing what? Or reading what? I feel like I need more information that I can process.
I do not know anyone personally on this same journey who I can learn from. I assume that one of the chemos down the line just stop working all together? Is this how it goes?
Thank you all for listening and contributing anything than helps shape the discussion into a better way to plan and process. Love,
S.0 -
S. I sometimes find my thoughts running along the same line as you. At this point my tumor markers are coming down on Abraxane, but they came down on Taxol briefly, didn't budge on Gemzar. FEMARA and Megace failed me. I've been doing chemo since April 2012 and getting tired of it. Will my liver give out from all the drugs or will I come to the end of the road on chemo choices? Will the lung mets get worse? Should there be a topic specifically for this issue. Is this part of the uncertainty of the disease that everyone deals with. I don't know, but sure would love a discussion too. Jean
0 -
Watching Cathy going in H in the Big C right after losing Soleil kicked me hard. Very hard. I always imagined I would be waving my hands good-bye comfortably in my bed at a private hospital (we don't have hospice facilities here as far as I know) & the next minute I am flying away to wherever it is....
Really hopeful still my weak heart surprises me with a nice quick attack before the c-buggers eat all my body alive!
K-LO, glad you're doing fine so far. You've been one of the most supportive sisters here, I pray your journey is comfy & easy on you. Hope your hospice lasts forever..:) Hope keeps us alive!
hugs all,
Ebru
0 -
Check this out. Pal Care MD made a house-call today!
i had withdrawn from frequent MD visits, getting chemo, tests, etc pretty well. Her sharp focus on my relatively mild complaints was comforting.
She says it is difficult to plan for inpatient hospice. My DH says he has no problem with the home being the endpoint.
Btw,I first talked w a hospice nurse over a year ago. they really answered a lot of questions.
0 -
I am torn on what I want. Home vs. Hospice Facility? Either way, I agree, I hope that I do go quickly.
I was thinking the same thing about TV show the Big C. They showed her in hospice and then she ended up at home. In the show Cathy tried to control everything in her life up to the end,..... It was funny/ironic, because I thought it was like me...I will be trying to control things up to the very end...But the one thing she could not control was when she was going to die.
I was afraid to watch the last show of the Big C but actually it was okay. I only teared up once. That is pretty good for me coming off a depression spell the past few weeks.
Janis
0 -
I hope it's okay to post here, would pm but I'd have to pm most of you to get it out of my head - the hospice-to-hospice or not! My dad, 87 as well, stagefree, is in a hospice as of probably 3 weeks ago. He has stage IV melanoma which he has battled for over 25 years. The most recent one was dx the same week my second bc was dx and his surgery the same week as my bmx. His last surgery at Moffat in Tampa didn't get clear margins and was on his scalp over 9 cm by 6 cm. He now has brain mets with mild dementia. Luckily my younger brother stepped in while I was 'out of it' and placed both he and his wife (not my mother) in an assisted living facility that had dual licenses for both assisted living and nursing care.
That is the background, now the reason for me butting into your forum (of which I respect highly) - knowing hospice can do wonders in a home (both my DH parents lived with us for 9.5 years and had hospice in their last months) I was concerned what we would be able to do with dad after his nuerosurgeon stated that he had only 4 options left. Surgery (which he said dad would probably die on the table), Chemo (which could send him into total alzheimers at his age, per the Dr), Radiation (brain mets too widespread and he had rads earlier for another head melanoma) or hospice. The Dr said it wasn't an exact science, but that he had weeks or months left and he would suggest hospice.
I having had very nice memories of how kind hospice personel are (and a special breed) was up for the hospice but for telling him he was in hospice so that he could know and use all the wonderful things hospice can do for you (as in counseling about the end of his life) and consoling his wife. My brothers said NO we will not tell him. I think I'd like to know!?
I too watched Cathy in the Big C and cried - it is so much like my dad's condition as he cannot walk but tries everyday to get himself out of bed, even a hospital bed, and falls on the ground - his memory can't remember he can't walk, so he gets up and falls. I get a call and am always afraid it's the call 'gather the family and come down here - 7 hours away.
I guess I'm also breaking the rules and posting because I haven't found a melanoma.org site that can speak to these issues. Whether to tell him or not? Hospice told us to tell him only what he asks. His short term memory is shot but he did recognize me when I went there last week.
Oh, Medicare pays - but they also don't pay when you sign over to Hospice for other life saving things that could happen - hospital bed, walker, potty chair, meds, diapers, all are paid and brought by medicare but chest x rays, etc are not. They also provide a social worker and RN and an aide to come sit with him to let his wife have some time to herself.
Or so they do in Central Florida.
Again, going quietly back to lurking and so very sorry for the intrusion!0 -
Ebru,
I found this.... you might like to talk with this doctor. She seems determined to change how Turkey deals with terminal patients, and she has a nice demeanor in the picture.
http://www.hospicecare.com/news/11/07/travel_scholar.html
*susan*
0 -
Catie2013, I am sending you a PM.
0 -
Catie, your post is welcome. Your experience with Hospice is apprecitated.
I DVR'd the last 4 episodes of the Big C. I think I would like my family to watch it at some point. My mother, Siblings..and most of all my DH!
0 -
Dear Susan, thank you very much for the link, that's so sweet of you
. I'll check her out. hugs, Ebru
0 -
Update on "early hospice" experiment. Its been interrupted to put it nicely.
Kept feeling odd when nurses visited, cut them back to once a week and asked them to not stay so long. The process is, I tell the nurses what I feel or what I need. They text it to the MD and maybe the communication works or maybe it doesnt. There was nothing they could do about my main problems, orthostatic hypotension , cartoon voice, back poking out in a new place and coumadin mangement. They just dont handle these things on a daily basis.
My RN pretty much told me I would be discharged if I don't decline. At first that stung, but then I realised, "this is silly". My problems are either not gonna change or need attention by an MD. The BC case manager was interfering with access to PT, scan for back progression, I couldn't get my Xgeva,, etc.
So, I am "Off Hospice" at this time. My primary MD will be the Palliative Care Doc. MO said she would do it too.
Reporting in. Ill keep you posted.
0 -
The reason many people die so quickly after entering hospice (within a week or so) is because they enter too late, usually after a major discovery of their disease progression when it is clear that all options have been exhausted (acute liver failure seems to be a big one with many patients not entering hospice until they're jaundice with highly elevated bilirubin levels.) It all boils down to a MAJOR communications problem between the MO's and the patient. The patient doesn't want to even mention the word "hospice" to the MO because they often fear it will make the MO think they are done dealing with treatment... the MO's don't want to mention the word "hospice" to the patient because they often fear it will make the patient think they're giving up on them. As someone who has worked extensively in the hospice world, I can tell you this is how it goes down ALL THE TIME.
In my mom's case, she died 12 years into her initial BC diagnosis and 11 months into her Stage IV diagnosis. Once she went Stage IV and three chemos in a row were not working, in addition to losing over 50 lbs. and needing more ER visits as she deteriorated, I tried to gently suggest hospice. Mom wouldn't even acknowledge the word under any circumstances. She would always say, "I'm not dying so why would I need hospice?" So, after several attempts at gently bringing the topic up, we decided to let it go, fully honor her wishes and push on with treatments.
As expected, this was the worst thing to do in terms of prolonging her life (which was her ultimate goal) as she became so weak that the chemo eventually killed her (acute neutropenia [<0.1 WBC's] causing mucousitis [mouth sores] and leading to sepsis and organ failure.) None of her chemos ever worked once she went Stage IV and during those 11 months, she was miserable for the last 5 because of the SE's of the treatments and her rapid deterioration. Had she accepted hospice, she may have lived a bit longer, but more importantly, she would have felt a lot better with not having to deal with the SE's of treatment.
So, I think it's a choice each person needs to make on their own but I wish there were some way to better inform people about what hospice really is and how it can really help. Instead of multiple ER visits for IV fluids and acute symptom relief, a nurse is able to provide such things right in the home. I think it makes for a much more dignified and peaceful experience and helps people get their final affairs in order which helps their family immensely when they finally pass away. A friend of mine entered hospice when her and her doctor determined that the treatments were not working and she was showing rapid progression. She lived 10 months in hospice, every detail of her life was in order when she passed, and her and her family had a good amount of time to say the things they needed to say, do the things they wanted to do, and so on.
Until the MO's start addressing it with their patients when they know it's the best option, and until patients start addressing it with the MO when they're questioning if its the best option, there will continue to be this disconnect and people will continue to die soon after entering hospice.
0 -
I plan on going into Hospice when it becomes clear that I am actively dying. Whether that requires weeks or days of care, I will plan ahead and research. A teaching colleague just lost his wife to pancreatic cancer, and she spent her final week in hospice. He spoke of her passing with reverence; the facility has a policy that pain is not tolerated and she was comfortable and at peace and surrounded by loved ones throughout her stay and her passage into the next world. That is a facility I plan on researching. When will I implement that plan? When the doc tells me I am down to my last one or two possible chemos. I think I will need the reassurance at that point of knowing the transition will be smooth.
0 -
Thanks for this explanation Mox. I hope that others can absorb your words and make informed decisions. I believe that the process of choosing hospice would be so much easier if the communication between the MO's and their patients was honest and open. I agree that the reason that hospice care is often utilized way later than necessary if because of this. Thanks again for your thoughtful post.
0 -
K-Lo, so very glad to hear you failed Hospice 101!
0 -
Failing is not always bad! Your here for a while! Xoxoxox Jo
0 -
Stage IV members ONLY hospice discussion
Thanks friends but again, this is about all of us Stage 4's being able to explore what WE WANT and need. We've all heard stories, hopefully we've all talked to our doctors about it.
My true fear was that the H nurses were helping people get to coma and accelerating the exit. I know they fight pain with all their might, but we also have the right to a unique dying experience, being conscious of our reflections on life, hearing our loved ones near us, hearing music and books read aloud.
Again, this is k-lo, reporting from Limbo. cant complain.
0 -
Hi K-Lo, nice to hear from you, I've been thinking about you. The decision tree is still good, huh? Take care.
0 -
Kathy,
It is good to hear from you. I have been thinking about you often and wondering how you are doing. Sending you hugs.0 -
K-LO, I've been thinking about you. I agree with Bestbird btw! Glad to get the update from you personally. Hope you have many more months, years (one can hope, right?) with good QOL, surrounded by your loved ones, physically & virtually.
hugs, Ebru
0
