When is a good time to start hospice?

thatsvanity · January 2012

When my sister was sick she felt good about five days after a chemo session ended and really good before another chemo session started, then afterwards she was feeling bad again. Sometimes I wonder, if she had started hospice care 6 months sooner rather than doing chemo and radiation up until 9 days beore she died with only 3 days of hospice care, would she have had a better quality of life? Maybe for 6 months with hospice care she would have been comfortable as she would have had any pain medications, anti anxiety, anti nausea medications she wanted free delivered to our front door with a loving kind doctor who sat by her bed and listened.. There would've been no trips to oncology, just all the good drugs and her comfy bed. I realized after she died, that maybe she did chemo and treatments in the beginning for herself and towards the end of her life she was doing them for me.

barbe1958 · January 2012

When my aunt was diagnosed with appendix (?) cancer (that started it all), she was going to deny any chemo. I was angry when I talked to my Dad and said it was like she was giving up and not even trying. Then my Dad got lung cancer. He had treatment for 2 1/2 years. Surgeries, chemos, rads and more surgeries. At the end, he said if he knew he was going to die anyway, he'd have rather not made his last years so miserable. I felt a bit guilty, thinking us kids had kind of forced him in to at least 'trying'.

The point is, as you say, quality of life. Your sister might not have gotten sick until the very end. Most breast cancer patients don't die of the cancer, they die as a result of treatment!! Sad to say. But, it's only by getting the treatment that we can buy some time and even hopefully, go into remission.

So, yes, she probably would have had a much easier go of it, but she may have died sooner and it would probably have been painful as the cancer invaded her system. As for hospice, a loving doctor won't sit by her side, but you could! But, by doing the treatment, she had hope. Hope is pretty important to life.

My Mom worked in hospice at a local hospital for over 8 years before she became a patient. She knew that once she was in hospice it was only a matter of days. You don't spend months in hospice...usually just days. Denying treatment didn't mean she'd have to go immediately into hospice as the cancer wasn't invading her yet. Hospice is for the end of days, when you need pain meds to make your passing less painful.

Hope this helps....

3monstmama · January 2012

Thank you both for posting. Very thoughtful and helpful--my 82 year old mother was diagnosised with advanced ovarian cancer at the end of November. I struggle with what to say to her about how to proceed, wanting that she neither suffer nor just give up. She has always said that she didn't want to live forever (a reasonable outlook) but at the same time, she also suffers from depression and that certainly colors one's outlook and motivation. At this point she has done 1 full chemo that knocked her for a loop and landed her in hospital (in part we suspect because thanks to depression etc, she simply took to her bed post treatment) and then a lesser dose of chemo. She is currently back in hospital because her heart medicine --the diuretic--stopped working so she had fluid in her lungs.

Part of me feels that her quality of life truly sucks--she missed Thanksgiving, Christmas & New years with family. But might it get better if she proceeds with treatment? Her oncologist is quite optimistic and it does seem that the first round of chemo did knock down the cancer--CA125 went from over 7500 to 2300.

sigh. How does a person know or decide its the end of days?

SpecialK · January 2012

For both of my parents it was when treatment became too much for them to tolerate, as it was doing more harm than good. It is a sticky wicket, they were both very proactive and optimistic. That was how I knew it was the right time, when they lost that optimism. It used to be that the physician could not write the prescription unless he/she felt that the patient had 6 months or less remaining. Also the patient has to sign off on receiving no more curative treatment. They will continue with chemo though if it is for palliative reasons - my dad was diagnosed at stage IV and his chemo was only palliative, shrinking his spinal tumors to ease his pain.

thatsvanity · January 2012

I understand everone points of view... It is a hard question to anser and know the right time, I guess it just comes down to the family the patient, and the patient's plan for themselves. It is hard to know I guess we just want any precious moments left to be the best they can be and we all do the best we can.

barbe1958 · January 2012

The important thing is that I don't want someone else giving me MY date, so I have no intention of setting any one else's date!!! My Dad just got sicker and slept almost 24 hours a day. Bing! That's a big sign that the old body is just too tired to function properly.

Margi1959 · January 2012

Hi Amy Lynn - hugs to you. Honestly, honey, I'm not stalking you - just missing my mom as you are your sister and just found the hospice board today. Spent the last hour reading here and crying.

My mum wanted to die at home. I wanted that for her as well. However, she lived alone and would not let me stay with her overnight. She lived in a town an hour west of me and I was with her every day for the last nine months of her life. The day I had to send her to hospital by ambulance was probably the worst day of my life. September 11 in fact. I finally had to cry in front of her (something I never did after she got sick) and plead with her to let me get her some more help. She had been sleeping in her wheelchair because her bone mets prevented her from getting in and out of bed. Her feet by this time were 4x normal size from the fluids not draining. I was there every morning and stayed with her thru the day until supper time. She promised me she would go to bed, but never did. She did somehow change her clothes every morning before I got there though....that remains a mystery how she accomplished that.

Anyway, once she relented and let me call 911 for her - she shut her eyes and didn't open them again until we got her in to Emerg that night. They asked her if she was blind (LOL) and her response was "no, I'm not blind. It's just too much work to open my eyes." Dry humour to the end, my little Mum. I put her on a waiting list for hospice once we realized we were on the home stretch and a bed became available in 10 days. She had brain mets by this point too so she was quite unaware of her surroundings for the first few days but there were moments of lucidity with her and when she asked me where she was I told her she was in hospice. She thanked me profusely, saying that she should have gone there a long time ago. She knew she wasn't safe home alone anymore. That made me feel horrible that I hadn't done it sooner - bittersweet though because she did get to stay in her home as long as possible, so it really was a double-edged sword.

There will always be days that I wish I could have had do-overs with my Mum and I doubt that feeling will ever leave me. I'm sure you're going through the same thing in your grieving too, my friend. Please know that you are not alone with this - you did the best you could for your sister. We both have to stop asking ourselves the "what-if" questions....and when you figure out exactly HOW to do that, Amy Lyn, would you mind shooting me an email to clue me in too? Tongue out Keep writing, girl - I'm not sure about you, but the writing is really helping me through it all. Sometimes people who are here to help us (family members) just really don't get it.... I know you get it though, and please know that I get what you're saying too, ok?

Michelle21 · November 2012

What you said about most breast cancer patients die because of treatment, not the cancer bothers me. It worries me because of those of us who ate still pretty young and are trying to do everything we can to still be here and that includes treatment regimens. Do you have any evidence that supports your statement?

Mazy1959 · November 2012

Michelle, I dont know if shes right but I can tell you that without some of my treatments I wouldnt be here today. I had a large met in a vertebrae and it was gone in 9 months because of Aromasin. One chemo did nearly kill me in oct and I am no longer going take it. I know I wouldnt be here if not for Aromasin, Zometa, etc. Im not considered young, Im 53, I have had breast cancer for nearly 10 yrs. Twice I have been told I had 6 months tops without treatment. I still have a fair quality of life and I want to live. When I get super bad and bedridden etc...I will probly change my mind. Some docs and nurses even question why I still want CPR etc. Its "my" choice. I can talk, walk, laff,cry and my meds do pretty good at controlling my pain. When faced with treatment decisions I keep my mindset on how good and how long can I live...not how soon will I die. I have grandkids and I want them to remember who I am. Hugs, Mazy

soleil505 · April 2013

I am in hospice because no chemo will help me. At this point, there are only 2 chemos that I could take and the doctors said these two would have horrible side effects and probably not work for me. So, they recommened hospice. I'm at home, sometimes a little tired wobbly and nauseas, but otherwise I am living the life I want to live. Irf I would have been able to tolerate a tx, trust me, I'd be in the infusion room.

Hospice comes twice a week to do my vitals and make sure my meds are filled. As time goes on, they will come more often.

Some people go to hospice for awhile, get up their strength and go back to infusion world. Some of us can't tolerate chemo. I always think of Alesta, she just couldn't get her blood up . I can't tolerate it because of crazy allergies and because it has never worked for me.

We all just do what we have to do. Hospice is a good program and I hope I do not have to go to hospital again

When is a good time to start hospice?

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