1 (edited by marions Wed, 19 Dec 2012 12:19:07)

Topic: SENSITIVE BUT IMPORTANT - TOGETHER WE CAN DO IT

The lack of specific guidelines for Palliative Care and End of Life Care for our patients continues to expose our patients to needless suffering.  Symptoms such as pain, nausea, opioid induced constipation, etc. are not addressed adequately when in fact medications and treatments are readily available.

The answer to this problem can and should be addressed by our patient community.  The wisdom lays in the experience not only with each and everyone commenting on this board, but also with those individuals hesitating from officially joining in as members of the Cholangiocarcinoma Foundation.  Therefore, please help us establish guidelines for a Palliative Care Directory for Cholangiocarcinoma patients and an End of Life Directory.
For non-members: please join or forward your personal information, tips, hints, complaints, etc. to:

Marion.schwartz@cholangiocarcinoma.org

From the bottom of my heart,

Thank you

Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: SENSITIVE BUT IMPORTANT - TOGETHER WE CAN DO IT

My husband suffered from extreme nausea and excessive vomiting.  We used the Fentanyl patch in addition to Morphium increasing the dose as symptoms became more pronounced.  It became difficult to near impossible finding the balance of lucidity and symptom control. My husband suffered greatly and although there was little pain, his vomiting became relentless to the point that even saliva did not pass his intestinal tract..  In retrospect, I wish that a bypass procedure or g-tubing had been discussed at a time when such procedure was still a viable option.  I wish I had known.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

3 (edited by Lainy Sun, 16 Dec 2012 07:34:21)

Re: SENSITIVE BUT IMPORTANT - TOGETHER WE CAN DO IT

My husband was in Home Hospice for 4 months and it was perfect. We had a Hospital bed in the living room, a wheelchair, a walker and oxygen. Oxygen does relax the patient therefore helping with the pain. He was on Morphine and it had been increased as we moved over that 4 months.We had discussed the fact that at the end I may have to move him to a Hospice Facility. On Dec. 4th when the Hospice Nurse came to the house the 3 of us made the decision that it was time to make the move to a Hospice Facility. I got T ready and the Nurse spent about 40 minutes sending all of T's files over to the Hospice Facility via computer. Teddy's pain at that point was totally under control. When we checked in I told them he needed a Tylenol for his back now and then and they said, "Oh, we can't do that, it will damage his liver". I was giving him 150mg of Morphine  2 X a day with a breakthrough hourly of 75mg. Without my knowledge they did not carry through. In fact he got something for pain like every 8 hours! Then they took him off the Morphine and gave him a Fentynal patch that did not work at all. Who would have told them to make that change? So for 3 days he was not only in immense pain he was withdrawing from Morphine. His agitation/pain was beyond control. What we witnessed the 4th day was unbelievable until thankfully his body started shutting down. We were not  told about the patch for the chest rattle, I found out about it later. Hospice should be communicating at some point with a Doctor if not his ONC. They did this all on their own and without my knowing! There should be a better protocal for rare diseases. 3 head Nurses were fired. It is important to ask questions and know just what they are doing, whether it is in your home or at a facility. My biggest regret is that I did not bring his Morphine from home because I would have plied him with it.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

4 (edited by Gavin Sat, 15 Dec 2012 15:44:08)

Re: SENSITIVE BUT IMPORTANT - TOGETHER WE CAN DO IT

My dad started to suffer from nausea and vomitting whilst still at home. They tried to control this with meds of various types and combinations. Some with better success than others. Pain at this point was manageable with codeine based pain killers 4 times a day. My dad was at still at home at this point.

The nausea and vomitting worsened until it got to the point that dads medical team felt that he needed to go into hospice here to see if they could get it under control. Oral anti nausea meds were of no use at this point really as he could not keep them down long enough for  them to take effect and the nausea continued to worsen. Pain was still very manageable and dad was getting pain killing injections that helped a lot.

By this point, dads doctors stopped all of his meds orally and he went onto the syringe driver. This way his meds were able to go straight into his body without him having to swallow anything and this was done continuously over a 24 hour cycle. Now he was I recall only getting anti nausea meds, Haloperidol and pain meds, everything else had been stopped by this point. Pain still very manageable with additional pain shots if he wanted them.

Withdrawing the oral meds and the switch to the syringe driver worked a treat. What meds he was on now seemed to actually work as he did not have to swallow them and he got a huge bounce that lasted a few days. The change in everything was amazing. He was able to sit up, drink water and was actually hungry and asking for some food, a major change for the better. However, things were still progressing to the end and dad started vomitting black bile. He passed into a state of unconciousness like a coma and was vomitting black bile every few hours or so. This final period of my dads lasted around 24-36 hours and to be honest I would still say that his passing was very peaceful.

I hope that some of that is useful.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: SENSITIVE BUT IMPORTANT - TOGETHER WE CAN DO IT

Thanks Lainy and Gavin.  So, if we were to establish a palliative care directive what are the points most valuable. 
In my husband's case I would consider a g-tubing or a bypass procedure for palliative purpose.
Thanks and hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

6 (edited by Lainy Sat, 15 Dec 2012 21:09:51)

Re: SENSITIVE BUT IMPORTANT - TOGETHER WE CAN DO IT

Hospice  still needs to be watched and if your requests are not met, demand they call your Doctor.Not sure if a Hospital would have taken him at that point.
Sorry, let me rephrase that. Just because someone is in a Hospice Facility does not mean we can relax about our vigilence. Keep asking questions, like what are they giving the patient, how much and how often. I didn't question as I felt he is in a safe haven and they know what they are doing. I was wrong. I had no idea they stopped his Morphine until I read the files. For us not much would have mattered as when we got the files so much of them were bogus.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: SENSITIVE BUT IMPORTANT - TOGETHER WE CAN DO IT

Watched in what way, Lainy?

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: SENSITIVE BUT IMPORTANT - TOGETHER WE CAN DO IT

Gavin, do you feel that the syringe driver should have been used at an earlier time yet?  How do you feel about the consistent vomiting?  Do you wish there had been some type of intervention? 

This will be a crucial point in re: to palliative care for gastric cancer patients.  Although not all suffer from the same symptoms , any symptom should be addressed and adequately treated.

Hugs to you,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: SENSITIVE BUT IMPORTANT - TOGETHER WE CAN DO IT

Marion, tell me if you want more. The main gist of our situation was the abuse of neglect.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: SENSITIVE BUT IMPORTANT - TOGETHER WE CAN DO IT

Hi Marion,

As to the syringe driver, should it have been used earlier, maybe as it did help. But it wasn't used until my dad was in the hospice and I don't know if they would have used it when my dad was still at home as it had to be changed med wise every 24 hours. Plus, it was only started once all of my dads other meds had been stopped and that was only done pretty close to the end.

As to the intervention. Well I would say that my dad going into hospice was an intervention if that is what you mean. I'll explain further on that point. As you know, my dad used to go twice a week to the day care centre and the day care centre was staffed by specialist cancer nurses. Also, the day care centre was in the same building as the hospice, they are joined together and run by the NHS. Althou8gh the day care centre was a Macmillan one, it is still run on the NHS. My dad went to day care one day when he was vomitting quite a bit and the staff at day care didn't like what they were seeing with my dad so was admitted to hospice there and then to see if they could do something for the vomitting. Immediately my dad was admitted to hospice, they phoned me to tell me what was going on etc. Obviously my dad agreed to going into hospice as he knew that that was needed to try and do something about the vomitting.

So, I would say that dads med team were intervening on his behalf to help him. As to dads vomitting, it was horrible and it did affect the last part of his life quite a lot as it got, especially as it got progressively worse. But all in all, I have no complaints about his medical care as his gp, day care team and all concerned did what they could to help with that. They tried a ton of meds and combos of meds, and as far as his hospice care went, I thought that they did an outstanding job helping him. Maybe the syringe driver at an earlier stage, a few weeks maybe might have helped but I can't say that for sure.

Hope some of that is useful Marion and if I can help any more just ask.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: SENSITIVE BUT IMPORTANT - TOGETHER WE CAN DO IT

Thought to revive this post.

Palliative care differs from end of life care

Palliative care

•Treating distressing symptoms including pain, nausea, breathlessness, insomnia, and other physical symptoms caused by cancer or its treatment
•Treating a patient's emotional and social needs, including symptoms such as anxiety or helping with difficult family relationships
•Addressing a patient's spiritual needs or concerns
•Addressing a patient's practical needs, such as transportation and financial concerns
•Providing support for the patient's family, friends, and caregivers


End of Life care:

•Hospice care is for people with cancer that cannot be cured who are expected to live six months or less. It is high-quality, compassionate care that focuses on relieving symptoms and helping patients and families cope with death and dying.
•Hospice care may take place in your home or a specialized facility and involves a team of doctors, nurses, therapists, and other professionals.
•The hospice care team will work with you to help develop a care plan that helps you meet your goals.

Given my own experience and that of many others, I find that our cancer is not adequately addressed in either setting; that of palliative and end of life care. 

Please feel free to share with us your gripes and complaints or questions you feel had not been addressed by anyone involved in the care of your loved one.

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: SENSITIVE BUT IMPORTANT - TOGETHER WE CAN DO IT

Sensitive:      End of Life   

I found this informative article, "10 Signs of Death Approaching" written by Paula Spencer Scott and found it to be very helpful. I have always believed that the more you know the less frightening it becomes.I just posted it for Marinmommy but decided to make it a permanet post for any of you who may be interested.

http://www.cholangiocarcinoma.org/punbb … 524#p69524

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: SENSITIVE BUT IMPORTANT - TOGETHER WE CAN DO IT

Again, I am looking to implement a more disease specific guideline of symptom control for our patients in either Palliative and/or End of Life setting.

If I may quote Marinmommy's response to placement of a g-tubing:
"We pushed for the g-tube and he hasn't suffered from vomiting.  Keep in mind no one wanted to place it for fear of infection however the interventional radiologists finally agreed to it."

Vomiting and pain are the most troubling issues with this cancer. It has to be addressed by the medical community at large however; we will not see any changes coming about unless we, the Cholangiocarcinoma patient community, make it happen.

Please consider adding your comments on this thread.  Nothing equals the experience than that of a patient or caregiver touched by this cancer.


Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER