Stage IV members ONLY hospice discussion
Earlier, we agreed that we could talk hospice in HERE as opposed to shifting such discussions to the other forum (end 0f life...?) The concept is still sadly, connected to saying goodbye for us and our sisters. If the word upsets anyone, please block the topic. :-)
I wanted to explore what Ive been told and hear your impressions.
My Palliative Care doc (PCD) told me that too often, people are admitted to H "too late" Of course this is her speciality, so understand that. But I had told her that 2 men at my church were 'sent home to hospice care" and both were dead within days. I actually wondered if they had been over-sedated.
That's when she said what she said. So here am I , an example of HER type of thinking, admitted while still driving, high performance, I think they call it? Google:
KARNOFSKY PERFORMANCE STATUS SCALE DEFINITIONS RATING
Palliative performance scale (PPS): a new tool.
Anyway, clearly, it is must be much less expensive to place someone in H than to continue the clinic visits, scans etc. And, I have to say it is more comfortable for me at this time.
Now, she, my PCD, will visit me at home as well! I just felt like um, I really would like a doctor to examine this... and after years of ten MD's a month checking me, we can all imagine....
So, wondering if my situation is the future or an experiment for this cutting edge MD or what. But also, wondering what you might imagine you would prefer.....Kathy
Comments
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Kathy, I'm just trying to understand. Does this mean that you are stopping scans and treatment? To me, that's what hospice means - stopping trying to delay the disease and focusing on reducing pain. What does hospice mean in your case?
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latte that is what i thought as well
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I think I would rather enter Hospice sooner rather than later. I think it would give everyone (family, friends, co-workers) more time to accept the shift from fighting cancer to accepting the end.
My SIL fought it to the very end, but she also left everything unplanned. Her kids had a lot of loose ends to deal with. I don't want that. I want everything nice and tidy so that my husband doesn't have to deal with much regarding the end of my life. He will be lost enough as it is.
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I would rather enter it sooner than later, so I can be more in control of my "finale."
Chele - I am with you on the hubby aspect. I am trying to do everything ahead of time that I can think of to minimize his "duties."
And Kathy - if you are sending smoke signals, I hope you know we all will support you in whatever decision you make.
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Kathy, I would be pretty upset if you moved to a different thread. If someone doesn't want to read about the topic, they can skip it.
I'm interested to hear what you learn about Hospice.
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I am curious about why the palliative care doctor and not straight to Hospice. When I think of needing a palliative care doctor I think of incurable chronic diseases like COPD (pulmonary), renal failure (not a transplant candidate), diabetes, CF etc... not cancer. Diseases where patients linger for years on a downward spiral. When things are cut and dry I think of hospice.
I agree going to hospice earlier rather then racing at the end would be better. I know that with my Dad who was paralyzed from breast line down (aneurysms repair) also had renal insufficiency, MI, probably stroke, horrid bed sores (Enormous!) and umpteen other issues before he finally got hospice. He was 74 years old and looked like 110. My brothers fought viciously against hospice and my Dad wanted it. They accused me of trying to kill him, by sending him off to "hospice" at only 74. I kept pointing out that his issues were huge and incurable. I fought to honor his wishes and thought hospice would help manage his pain. Which it did.
My Dad died 17 days after hospice came in, and he stayed at their center and died a comfortable death. After all was said and done, my brothers had to admit that hospice helped our Dad and he died peacefully. It also saved my Mother, who took care of a 6ft 4 inch 270 pound paralyzed man, foley, bowel care, wound care and all his meds by herself - 24/7! She nearly needed hospice for herself once it was all over. She was in her late 60s at the time and only 5 foot 6! One tough capable cookie. Hospice was terrific. I think he should have gone to hospice sooner.
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I want to get invovled with hocpice sooner as well. As a matter of fact I was just researching hospice facilities in my area on Monday. This sounds like a great idea, i'd love to hear others point of view on this as well.
Just added to my favs' be checking in frequently,
Edie
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I think I am still in denial. The word "hospice" reduces me to tears instantly.
Like other ladies, I thought hospice was for a time when one is no longer actively seeking treatment. Like Soleil, when all treatments have been exhausted, no matter what timeline. I would like to hear more about what is happening with you.
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Palliative care is coming into its own as a bridge to hospice......or not. Palliative care doesn't necessarily lead to hospice.
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I have had a recent hospice experience with my brother and some aspects of it disturbed me greatly. He was dxed in Nov with advanced lung cancer and after a very short run on chemo they deemed him "unfixable" and discontinued it.
The point of hospice-as I understand it-is to make someone comfortable as they are dying. At the intake interview (I was there) they asked him how much pain was he willing to tolerate versus being coherent. Well I don't think they satified either condition. He told them he didn't want to starve to death or drown from the fluid in his lungs. If someone is gasping for their every breath there is no drug that will fix that. SO the anti-anxiety drug made him hallucinate-he was seeing spiders everywhere and talking out of his head. They said that changing the drug would probably not help. The pain meds made him nauseated and messed his bowels up. He was there 7 days before dying and it was horrible to watch. I felt like we really had to push for increasing the pain meds as the days went by. I talked him into going there instead of home (he lived with my parents) because his care was so labor intensive I didn't think we could manage it. I am sorry about that now.
Someone stayed with him round the clock because he was so afraid. He was so quick from dx to death-he hadn't accepted the fact he was dying. The constant changing of nurses/aids so that you never really got familiar with them-or they with my brother made the situation that much worse. They were for the most part kind and caring but it was all so impersonal.
I thought I had made all my decisions about how I wanted my end to be but this recent experience has made me think otherwise. I don't really want to die at home but I want to spend as little time as possible in a hospice building. When I decide my options have run out I hope that I go quick. I have a sister who has worked at a hospital for 35 years and she will be a very strong advocate for good care for me but there are things you just can't control.
So it sounds like I am in the minority as far as wanting them to leave me alone til the end. I don't think the hospice itself was a bad place but it wasn't the peaceful end that I thought it would be.
I am going to look up that performance scale thing when i get off. I am reading your post to mean you are already under hospice care-just seems like if you can still drive and stuff you wouldn't qualify. If it makes YOU comfortable that is what is important.
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Kathy, thank you for that performance scale. It's real food for thought.
You asked what we would imagine we would prefer. I will tell you how I feel currently, but first must provide some background.
I had always heard good things about hospice care from people I respected. When my mother was very ill with metastazised breast cancer (complicated further by vascular dementia) and was clearly not going to get better, the hospital wanted her off the premises. I was desperate to find somewhere decent for her to be cared for as she could not go home. After considerable pulling of strings and effort, I managed to get her into hospice care at a good nursing home over the vociferous objections of two of my brothers. Like your siblings, rosevalley, they believed that hospice meant homicide and perhaps still think so. It caused such a rift that we no longer speak to each other.
Not too long after, I helped two of my other, younger brothers (I had six of them!) with metastasized lung cancer get into a very impressive hospice facility. I believe strongly that in all of these sad instances, hospice was called in and resorted to far too late. The complicating common denominators in all cases were very late diagnoses, the patients were being thrown out of the hospital, and they could not return to their residences to receive at-home hospice care. I saw people who were dear to me suffer unneccesarily because they did not have access at the appropriate time to the expert care that hospice medical professionals know how to provide. In short, they spent their last weeks in pain and fear that was relieved only toward the very end by sufficient palliative care.
I was very impressed by the hospice personnel and the compassionate, knowledgeable care and pain control they provided to my mother and brothers. So, yes, when I am at 50 on the performance scale you cited, I think it will be time for me to try hospice.
Additionally, as medicine advances, the lines are blurring between palliative and hospice care.
I wish you the best going forward, Kathy. Sorry for the treatise--but you asked!
Tina
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Hello ladies. I happened upon your discussion, and wanted to share a link about the difference between hospice and palliative care. http://www.caregiverslibrary.org/caregivers-resources/grp-end-of-life-issues/hsgrp-hospice/hospice-vs-palliative-care-article.aspx
I was a hospice volunteer for a few years. In general, hospice programs provide care for patients who have a life expectancy of 6 months or less. Hospice care does not usually enlist any life saving procedures. Palliative care is a plan of care without any limit on life expectancy, or limit on life saving treatments.
Both programs are without a doubt the most empowering and peaceful ways to live the life you have left as fully and love filled as possible. I wish you all well on this journey. Sending you positive thoughts.
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I looked up that performance scale and it is pretty simple to use. I don't understand why it was created except maybe for ease in charting or maybe for reimbursement from insurance. I have no idea.
I think palliative MDs are a splendid idea for some nasty chronic diseases. We have a childhood friend who has diabetes and is now blind, severely disabled from it. Suffering with something like that - rheumatoid arthritis, chrones, ALS etc... can get miserable fast. Palliative care would be a wonderful bridge from the primary care office (overloaded, understaffed and underpaid) to have pain management, anxiety/ depression from being unable to control disease processes and help yourself - all managed by a physician who understands that the world of chronic disease is different. You get a gall bladder attack and a lap chole and you go home; you're done. It's over. You get stage 4 cancer or diseases like ALS, MS and you're a "lifer."
I do wonder how one goes into hospice sooner rather than later, when dying from cancer has so many variables and one can never really know how quickly one will go down hill. As many here on the board have pointed out they felt fine and were anything but. Timing is not an exact science.
I really feel for lilylady and her experience with hospice and her brothers death. It did sound awful. Our experience in Sarasota with hospice was outstanding. They helped the entire family. They were outstanding with pain management, woundcare and comfort care advocates. Hospice was way better then the VA was for managing my Dad's pain. My folks were very lucky. I guess the lesson in all this is to really check out hospice in your area. Talk to folks who have used it, ask questions.
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in 2010, my best friend sally, who had had lung cancer 10 years earlier, died at home where she wanted to be. she had mets to her brain. as i was the one who asked her to go to the doctor,as i had noticed some strange behaviour of hers, when they found her mets, we agreed that she would do wbrt (not without its own special side effects) at the beginning we knew it was palliative care. to keep the swelling down. after wbrt, and about 3 expensive months of tarceva for a new adenocarcinoma in her lung, and her doctor getting angry with her for not quitting smoking, she told sally there was nothing else she could do for her and suggested hospice and asked her if she knew what that meant. sally said it means i only have a year to live, and on the way home, she tried to jump out of my moving car....so with the help of some very good friends,my understanding boyfriend of 10 plus years,great neighbors,and myself we were able to take care of all of her needs and wants. till one day she refused to eat or take any meds. that was the day i called hospice. they were so wonderfull, and she made her wishes clear, and it was such a relief for both of us. And they ask you if you want iv fluids, and she was very clear that she did not. to this day, i wonder if it hastened her passing. A neighborwoman who was a retired r.n. and her husband who is an emergency room doctor both said it was a gentler way to go once she had reached that point. the rn friend of mine just passed herself, o how i miss her,on march 18th of this year. my whole life, and they were the finest women i ever had the pleasure to spend time with. she had breast cancer for 33 years! 10 years ned before reoccurance. Lois! i miss them both so much. since my dx, i have thought long, and i would do it in a heartbeat. whether i decided home or a facility is a talk i have yet to hold with my sweet man. no children. once upon a time i thought i would go to aforrest and chain myself to a tree, and just think about things till the end. too many bugs though. love all y'all, go bco!
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With a stage IV diagnosis, I think looking into hospice is a good option. I actually know of people who went into hospice and came out and went back to work.
Many people do not want to face or accept they have little time left. I've seen far too many relatives who suffered because they refused hospice. Hospitals do not want to care for people if there is no treatment available to them and it is much more expensive than hospice would be.
Personally, I don't want to suffer and I don't want my family to suffer.
Terri
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Hey y'all, thanks for participating. This thread is not about an individual, although we will all share.
OK, that makes sense that PC has been thought to be for chronic illness. The way it came to us was that the Comprehensive Cancer Ctr was having seminars. My DH and I went to hear the doc who is now my PCD, give a talk. She explained what Chick said, a bridge between hospice and cancer care. So you go in for chemo, maybe even a cure, and but you could potentially die. Well, they study every aspect from the acute care to the end. for example, early in my Tx, when I went to see them, (I had to see the MD to get the free cancer counselor), they identified problems and solutions that my MO never addressed. "You're getting 4 drugs that are very constipating, you should be taking Senna and softeners"
I liked this PCD so much I would talk to her about weird things that were going on. She was a supportive member of my team.
When I realized I had had enough chemo AND my brain mets returned, I thought about hearing people say:"I am tired". You just know. Going off treatment seemed to be the time you would go on H, if my PCD was correct.
Very good food for thought from everyone. Please this is not a sad time, this is part of the process that we all can help each other understand.
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This is a good description of what palliative care can be:
Baylor health care system.
Palliative Care
Personal Choices About Your Healthcare
Issues Surrounding Critical Illness
When facing a life-threatening illness, we go beyond advanced medical treatments and offer compassionate care to help you and your family members cope. This service is called Palliative Care.
Our palliative care consultation services help you face the complex physical, psychological, social and spiritual problems that often accompany advanced illness. The Baylor Palliative Care team includes physicians, nurses, chaplains, occupational therapists, social workers, pharmacists, nutritionist, speech therapists, music practitioners and volunteers. These dedicated team members are trained to help you with the issues you may face in dealing with a critical illness.
In addition to your regular medical treatment, Palliative Care team members help determine a care plan that meets your wants and needs, including management of pain and other symptoms, counseling and spiritual support and other therapies. This is available to any inpatient facing a serious or life-threatening illness and their family members at their request or at the request of your primary physician.
The Baylor Palliative Care Consultation Service is hospital-based and different from hospice. You may continue to receive treatments such as chemotherapy or radiation, while also working with the Palliative Care team. If you do not respond to treatment designed to cure your condition or send it into remission, our team will assist you, your family members and physician with the transition to hospice if desired.0 -
Thank you Kathy for starting this thread. It's in my fav now. Jo
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Yes. thank you for starting it. It sounds like Texas has it together with many more options for folks. Things do not seem to be that integrated here in Oregon. No one has ever mentioned palliative care doctors to me, although I can see them out there in our managed care list of physicians. Our insurance is so friggin cheap that they would no doubt block it as unnecessary. It will be a good thing when it all gets integrated and they get enough feedback from patients to know when to step in. My experience is that oncologists tend to ignore side effects of drugs and think it's the price to pay to kill the cancer, so buck up and take it. Someone to treat the body and person attached to the cancer would be very nice.
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MsMerz, haha re smoke signals. Are you seeing black or white smoke?
TY, Paula, the link to Hospice v PC was a good one.
I had such faith in my PC team, I asked if I could still call/visit them. They keep my med orders straight. Oddly, if H handles your meds, they are free, but you can only get a 2 week supply.
The head MD is the director for the H I chose. She had previously given me a ranking, top 3-4. Her H was only 2d or 3rd, but I chose it bc she is their medical director.
Get this: I emailed her saying I felt like I needed her to check something. I said I understand that your H nurses check me (too) frequently and report to you. But, may I make an appt? She answered immediately, "my clinic is so full, it will take a while. But I can make a house call" A house call!!
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This is Blossom's husband. This was our experience in rural Alberta, Canada.
For Blossom, her Oncologist handed her over to a symptom control doctor who prescribed drugs to try and manage the symptoms of both the cancer and the side effects of the drugs. At this point she was at home and we had a Home Care Nurse who helped coordinate and communicate with Doctors and other Health Care Services (dietician, speech therapist, oxygen supplier, etc).
The small local hospital had a couple of Palliative Care Rooms which is where Blossoms ended up prior to getting here wings. There was a local Palliative Care Doctor but we never got a chance to see him as he was away on vacation. Instead a local general practitioner looked after Blossoms. In addition, we saw a Palliative Care Nurse that discussed different drug options which might work better with the general practitioner.
In Blossom's case, she was hospitalized for just over one week. During that time two trips were made to a larger hospital 35 miles away to get fluid drained off one of her lungs.
Based on my experience above, the Symptom Control Doctor, General Practitioner, and what a Palliative Care doctor might do is all the same. Basically prescribe drugs and medical procedures to manage symptoms and make you as comfortable as possible.
Not having been exposed to a Hospice, I assume the only difference is that they would only use drugs, without the use of any medical procedures.
I feel deeply for all of you and your loved ones as dealing with cancer is an undescribable ordeal.0 -
Good thread, K-Lo. Thanks for starting this. I'm a planner, so I want to know what is ahead of me.
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Thank you Blossom's husband for sharing her last days with us. Thank you, Kathy for starting this thread. It does help me a great deal to start thinking about this and to plan ahead.
I agree that it would be much better to get into Hospice sooner rather than later. I am thinking it might be better to arrange the Hospice care at home rather than in a facility. Maybe I am wrong but the rather negative stories I have heard re: hospice always the patient was in a hospice type facility, not in their home. It probably just depends on the facility. Some are probably better than others. I would think that the patient and their family would get to know the hospice staff more personally if they are coming to your home.
I also was amazed to see that Kathy's doctor made house calls! WOW! I have spent so many hours in doctor's offices, it seems incredible they would come to me! I guess as one becomes more seriously ill, they cannot be going to the doctor anymore. More reason for starting Hospice sooner rather than later.
So once the decision is made that it is time to stop treatment, I would contact Hospice. That decision will be a tough one but as we saw with Soleil, sometimes the decision is made for you. All I know for sure is I am grateful to have services like this available. That hopefully my dying will be less painful or frightening for both me and my family is a wonderful thing.0 -
I have been with the palliative care team since being diagnosed with mets and think I am very lucky to have done this. When I first came home from hospital I was very sick, could hardly breathe and was in pain and nauseous. Palliative care came and organized aids to help me, reassurance and a lady to clean my house every week. I have a spot reserved for me in the hospice area of a major hospital where Kathy from pal care said I will at times be in and out for a tune up to use her words. The aim is to go there when not doing well with the aim to get me home again as soon as possible. I want to stay in my home till the end then go to hospital to die as I am on my own with 21 year old son and don't want him to feel sad about the house.
I am doing so well now that they don't visit me weekly now but just ring to make sure I am ok, which is what I asked for.
I can't begin to tell you how reassuring it is to create a relationship with my care team while I am still fine. Last week the social worker came and we did my end of life statement so that's another job out of the way. I have had the dietician come when I was struggling with food and another to discuss exercise. Also they have helped me submit paperwork to get all the money I can through the government and superannuation. Don't hesitate in contacting them, they are truly wonderful.0 -
There's something I'm not getting here...and not sure I can even word it right. I pretty much want to make the same point Rosevalley made. How can you call hospice in sooner rather than later..sooner than what exactly? I would think as soon as you decide you don't want any life saving treatment anymore then that would be the time to call in hospice...I mean you can't really have hospice when you're still in active treatment. And you have no control over how long after discontinuing treatment you will pass. And I am not understanding the advantage everyone is talking about in calling hospice in sooner. What exactly do you see the advantage as being?
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If you don't mind, I'll jump in and add my very recent in-home hospice experience (my 87 year old father passed away on Wed.). My father finally slipped into total kidney failure, and as he had previously told the doctor he was NOT going to go back on dialysis, we knew what that meant. He began not really eating much, not going out to church with my mom, etc. Finally, when his latest test results showed what was happening, his nephrologist gave the referral to hospice on Thursday morning, May 2nd. The doctor said all that was required was for him to declare that my father was expected to pass away in 6 months or less, but that was not the limit to hospice, it would continue as long as it was still medically needed.
Later that same afternoon, we had our first visit from a hospice intake coordinator, and a nurse. Once he was registered, we didn't have to take him to the doctor anymore, if needed, the doctor or nurse woudl come to him. They arranged a hospital bed to be brought in, and a bedisde comode, and sent all necessary meds to us. All this was completely covered by medicare, with no copays at all.
As expected, my father declined rather rapidly. He wanted to stop taking all the pills he had been on for years, since, as he put it, "I've been taking them for 12 years and they didn't cure me." We generally had someone from hospice at our house at least every other day, and they would have come more often if we requested it. Thankfully we had several family members around to help out. We had a number to call 24 hours a day, and could speak to a nurse about any symptoms that concerned us. They also sent a care kit, that had meds that we could administer ourselves as needed, after talking to the nurse on the phone.
It was hard, and sad, but I think very comforting for him to be at home. He would quiet down as my mother would talk to him, and she slept in a bed next to him so they could hold hands all night. I also think it helped my mother be ready to let him go after seeing his decline.
I know this does not equate any hospice experience that Stage IV BC women will endure, but I did want to tell you how comforting we found it as a family, and it wasn't nearly as traumatic as we had feared.
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Kathy, I think Hospice is one of the last steps in the "journey." What I understand it to be is maintaining the quality of life while providing comfort care. I think it's wonderful to have this support for patients and for the family members as well. Such a noble and compassionate group of professionals. Although it's not the "right" time for me, but I too have decided to have Hospice sooner than later. I believe that I'll know whenever that time comes.
Rose
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As far as Hospice goes, I believe you can have Hospice care when you are not receiving treatment anymore and are expected to not live beyond six months. If there is a circumstance where you want to try a treatment, you are not bound to stay in Hospice care and are free to try another treatment. On the other hand, if you live beyond the six months, you do the paperwork and continue in Hospice care.
I have been told that Hospice can offer more medication than a hospital can as far as "end of life," issues goes and being comfortable.
I found the Karnofsky performance status posted above pretty helpful.
I've never heard of Palliative Care Team until this thread, so that's news to me. I did a google search for my State and found several hospitals who have that type of program.
I've thought about where I would want to be when I've reached the end of this road, but the pros and cons leave me not knowing what I really want. Maybe a thread like this will help.
Thanks, Jean
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I hope it's ok to post this as it is my mom who is stage iv. I just wanted to let you know that she is in hospice. They still allow her to remain on a hormonal but they told me no chemo while on hospice. So she is still taking aromasin.
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Dear Jill, " And I am not understanding the advantage everyone is talking about in calling hospice in sooner. What exactly do you see the advantage as being?"
The very question you ask was the dilemma I felt when i started the topic.
A. Everyone I heard of going to hospice died within a week. (You know, Soleil and I were in this little club and boom she was gone.)
B. I asked PC, are they getting heavily sedated, helped out of the world quickly, or what?
She said, no, those referrals came too late. That's not how it should work. There should be an ongoing discussion with the MD of one's status and which choices are best, etc, etc
So I thought , well, I'm doing it right then, I know I don't want anymore chemo, and H will probably help my family adjust to the changes.
Of course, most of us in here are seeking every viable treatment to stay with family etc. So if it comes down to your doctor saying, hey this is it, then I guess you can be on a thin edge.
Anyway, I was wondering if I'd activated the system too early because I'm up and about. The H staff assure me that this is good, they are flexible with my status. And they really are smart and responsive. Otherwise, I'd be in waiting rooms to see MD's about problems.
Thats about all; this topic probably has been thoroughly reviewed. Thanks, all.
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