Topic: Article on Hospice by Atul Gawande

This is an amazing article by Dr. Gawande.  Its rather long but well worth the read. 

Betsy


http://www.newyorker.com/reporting/2010 … ct_gawande

Re: Article on Hospice by Atul Gawande

Betsy - Wow....that was amazing.  It's very long but worthwhile.

Mother of John who lost his battle on Oct. 9, 2009 at age 30....

Re: Article on Hospice by Atul Gawande

I read this article through to the end and found myself wondering how much a person has to suffer before someone says "stop!". There are therapies but should we continue to look for them when we have reached a point of no return. I am 67, have had a wonderful life, able to do pretty much what I have wanted to do all my life but this CC has changed my path. I have never been afraid of cancer even though I watched my patients go down a path of increasing debility from their cancers. I am a nurse practitioner and have managed a cancer registrar program. My patients for the most part have moved through their disease with excellent supportive care that addressed their needs fully, particularly the pain management. I think sometimes that it is the pain that patients fear most and if we can control or decrease that we have won half the battle against this disease.

I have lost three close friends to cancer in the last two months and prior to that I cared for my father as he died from a brain tumor and a year later I spent 9 months caring for my mother who had metastatic squamous cell cancer. My only  concern is how my husband will manage the later stages of my disease. He may try to pressure me into trying a trial or treatment that I know will not change my course and may diminish my last days from a quality standpoint. I have to have the courage to say "stop" when I feel my life is no longer under my control. I want to live and die with dignity..........

Re: Article on Hospice by Atul Gawande

After reading Gawande's article, I found myself asking the same question - "how much do people have to suffer before someone says stop?"  When both of my parents died, it was very difficult to get the hospital to stop treatment and my Mom had a Living Will that stated DNR.  I was shocked!  It was awful for us because we kept thinking, is there a chance she will recover?  Did we misunderstand something?  And my poor old Dad was hours away from dying when we finally stopped treatment.  I will never forget how he was barely awake and the nurses kept trying to get him to eat pills crunched up in applesauce.  We had to keep telling them, NO!, we don't want anything else but comfort measures (and lots of it!).   In my own case, my doctors never discussed the severity of my diagnosis of cc - or the risks involved in the resection I was about to have - I learned it all from this site.   I do feel very strongly that our doctors need to be trained to have end of life discussions with their patients and families and give realistic expectations so they can make difficult decisions early rather than later. 

Betsy

Re: Article on Hospice by Atul Gawande

I have mixed feelings right now. We could demand a STOP to meds if we are the patient but then we still need a doctor to order pain meds. Teddy took nothing but pain meds in the end and unfortunately the 4 days in Hospice they didn't give him those and what I saw for 4 days, my daughter and I cannot get over. I thought it was a combination of the 2 types of meds that would take one to a peaceful end. I never thought to call his doctor because we were at Hospice and I never thought to run home and get his morphine as I would have given it to him myself. I was so afraid he would pass while I was gone. Now I am having bad dreams and my "Precious time" was stolen from me. I am trying so hard to get it back. I will tell you all this, that the very last 5 minutes were more peaceful then anything I have ever seen in my life and I did hold him while he passed. Do not ever be afraid, it was undescribably like being in another world.

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: Article on Hospice by Atul Gawande

Lainy, I know you are suffering for the decision you made regarding Teddy's last days but you did what you thought was best and it should have been. It was the fault of whoever was in charge of that facility. We all learned from your experience, especially the sharing, and that may help someone else make a decision based on knowledge. How would you ever have known that they would not give the level of care that you gave Teddy for so long. You can't know. Based on your experience I will look closely now at my options while I still have the energy and the time to do so. I won't leave the decision to my husband because I have so many friends who would have a better perspective. I know that I want to die at home after I have painted enough pictures, shared enough laughter and love with friends and family, eaten enough of the comfort foods I crave, and just experienced enough "life" before I go. You gave that to Teddy......never forget that.

Charlotte

Re: Article on Hospice by Atul Gawande

Oh Lainy, I agree with Charlotte - how could you have ever known that you would be let down like that when you needed help the most. 

I had a similar experience like yours when my Mom died.   She was in a nursing home at the time and we had just contacted Hospice before she died.  Even after I talked to her doctor and we agreed on "comfort measures" only, I had a hard time getting the nursing staff to honor that request.  They didn't want to give her too much morphine because she wouldn't be as responsive.....who the hell cares - she was in so much pain....I started feeling like I was being judged by the nurses and that maybe I had misunderstood what was happening. 

So what's the solution?  Maybe you'll find some answers as you pursue Hospice for an explanation regarding Teddy's treatment or I should say, lack of treatment.

xxoo
Betsy

Re: Article on Hospice by Atul Gawande

Thank you ladies, I needed that today!!

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: Article on Hospice by Atul Gawande

I had quite a different experience with the Hospice who came to my home to care for John.  They were ALL about not having him be in any pair whatsoever....and he wasn't.  My only problem -- and this was me -- it was a little weird having total strangers in my house 24/7.  And - to be honest - most of what they were doing for him, I had done for him anyway.  So, after two days of 24-hour Hospice, I spoke to the nurse and arranged for someone to only stop in once a day.  They also brought in a male aide once a day who washed John down and changed his bedding to make him comfortable and keep him clean.  I have to admit that I am a bit of a control freak so I wanted to do everything I could and I wouldn't leave him alone when the nurses were there even during the night.  I slept on a settee in his room so that I could be aware of everything that was going on.  The nurses were very kind, but I was his mother and I was going to be there if he woke up, even for a few minutes.  John's last hours were peaceful as well.  As a matter of fact, he got out of the hospital bed and sat on the settee near me and wanted to hug me, his Dad, his sister and my sister.  Then he gave us all a huge smile.  Shortly afterward, he wanted back into bed and he just stopped breathing....very quiet, very peaceful.  If I wasn't looking right at him, I would not have known that his breathing stopped.  I believe the medications he was given did make his heart weaker and these meds were all supplied by Hospice.  It's a hard image to get out of my head, but I am very grateful that there was no pain or discomfort. - Nancy

Mother of John who lost his battle on Oct. 9, 2009 at age 30....

Re: Article on Hospice by Atul Gawande

lainy....everything you did for teddy came from a heart filled with love you did what you had to do and teddy knows this....most important you were there with him and held him in your arms....no one can take that from you......ron and lucille

Re: Article on Hospice by Atul Gawande

Here is a link pertaining to the above discussions.  Thought you might leak to read up on it.
http://www.cancer.gov/ncicancerbulletin/032310/page8
Best to all,
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: Article on Hospice by Atul Gawande

Marion, this article is so very true. Teddy's ONC sent us to my ONC surgeon, knowing there was no more that could be done and my surgeon was the one who laid it on us. It was all very smooth and nicely done, IF that kind of news can be nice. We were fine with it actually as we loved my Surgeon and we felt bad for our ONC having to tell us. Let's face it, we really knew anyway. But a good article.
P.S. Got a call from Susan last night and she is still trying to get a meeting set up.

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: Article on Hospice by Atul Gawande

Hi Marion,
Thanks for the article.  Very interesting.  I would love to learn how to talk to my doctors more effectively.   

betsy

Re: Article on Hospice by Atul Gawande

Hi Y'all,

When we went to the onc he never mentioned anything about the end of life, or much more about anything.  My husband had gone through many illnesses sarcoidosis, ganegreen, above knee amputation, blood clot in lung, open heart surgery, blood clot in kidney, then to top it all off CC.  Every doctor we had with all the other illnesses were honest with us.  We found out July, 2009, he started treatment in Sept., 2009.  He had chemo every two weeks, in Nov., 2009 he started to have to have blood transfusions. In Jan. 2010 he woke up throwing up blood, and he had a huge bruise about 12 inch square on his side.  So I take him to the hospital, then three days in ICU, he then was transferred to ONC floor.  About two weeks later I asked the doctor what stage was it, he told me it was stage four when we found it six months ago.  Thanks for telling us.  Then I asked him how long, he said six months,  two days later three months.  Then a couple of days longer another doctor came in and said we needed to move to hospice, he lived one day.  I feel like we were robbed by not having any idea.  We together with some wonderful doctors had conquered other diseases.  I am still waiting for him to come home from the hospital.  I told my couselor the other day I feel like he was in a accident and waiting for him, not much has changed in the house, it is waiting for him to come home also.  She said maybe it is time to make it my house.  If the doctor had only been honest.

I'm still and always will be Wayne's wife.

Love to my Wayne for 36 years
I'm not a widow, I am a wife
We are only apart for heaven's sake
You are waiting for me at heaven's gate

Re: Article on Hospice by Atul Gawande

This new approach regarding physicians discussing end of life care is to be implemented now.  This may be difficult for some doctors to address.  They are tought to keep patients alive and they may have problems separating one from the other.  The reality is though, that all of us, at one point, will be confronted with this issue.  A good time to start marking our wishes clear is when we are healthy and of clear mind. 
All my best wishes,
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

16 (edited by marions Thu, 13 Jan 2011 12:02:31)

Re: Article on Hospice by Atul Gawande

Lainy......You and I had plenty of discussions re: the end of life care Teddy received by the Hospice Facility.  GI cancers notoritously are difficult to control at the late stage however, patients have to be assured to receive the utmost of pain control and nausea control.  If they can't provide it then patients need to be in a hospital setting.  This should have been made clear to you. 
I hope for your meeting to take place soon, because you are entitled to some clarity regarding their failings regarding Teddy's care.
I am fully behind you on this.
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: Article on Hospice by Atul Gawande

We found out today that my mother is no longer a candadate for chemotherapy treatments as the cancer has progressed to the lungs, bones, brain.. its too far gone.  Hospice comes to the house on Monday morning to evaluate the situation.  I knew this was coming but just hearing it has me in a whirlwind.  Im back to Nov 2009 when she was diagnosed.  I thought I would be ok because I knew it was coming but im not. 

My question is my mother is in a LOT of pain.  Will they keep her home or allow her to go into a facility.  How would that all work?

Re: Article on Hospice by Atul Gawande

Dear Fightingformom, Hospice will evaluate her and then decide how much pain med she should be on. They are extremely good at this and then they moniter her and when they feel she is nearing the end you can have her moved to their facility. If Mom is in that kind of pain you could have them come now. They work very quickly and before you know it everything is set up. Is she on pain meds now? There is no reason for her to suffer with pain as they will try to make her as comfortable as they can. I know this is a very hard time, I just went through it with my husband, but try to stay strong so this time is not wasted but used to good measure. If after the evaluation they feel she belongs in a facility instead they will also take care of that. Wishing you the best.

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: Article on Hospice by Atul Gawande

This is such a good thread for those of us who are nearing hospice, have friends or family needing the service or want to be prepared with the information for future care. It is so important to know the philosophy of the hospice regarding pain management.

I don't see much comment on the use of pain patches as primary pain management or as an adjunct to IV or oral meds. It seems like a good option for those who are unable to keep oral meds down but don't want an IV keeping them down.

I'm waiting for the results of my CAT scan from last Wednesday. It's the same for all of us I suspect. My oncologist comes to my local hospital once a week so my appointment is next Wednesday. The waiting is more difficult as time passes knowing that the likelihood of spread is greater with each scan. I remain active and positive and as I have said before I am not afraid. So many have shared their journey which makes the path more easily traveled....

Thanks to everyone who takes the time to comfort others while they draw strength from those who give their time and knowledge. God bless you all.

Re: Article on Hospice by Atul Gawande

Charlea - I can only give you my son's situation with the pain patch (fentanyl).  He was given it but was still having a lot of pain.  One of the nurses in the hospital at the time said the medicine needs to be absorbed by fat and he was so thin at the time, she didn't feel it was helping him at all.  He did better with the morphine on board where he could push the button and get a dose delivered as needed.  I'm not sure if this goes for everyone,  but that was his experience.  Hope that helps......Nancy

Mother of John who lost his battle on Oct. 9, 2009 at age 30....

Re: Article on Hospice by Atul Gawande

Hi Nancy. The patch also did not work for Teddy as well as the Morphine. Unfortunately they switched him just before he went to the Hospice Facility. They never offered him intervenous at the facility either. My daughter and I have a meeting with the Hospice Facility this coming Friday to discuss the way he was treated or I should say not treated. I have also written a letter to the National President of Hospice but have not heard back yet.

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: Article on Hospice by Atul Gawande

Betsy,

Thanks for posting that article, it made an interesting read.

Back in April when my Dad was diagnosed he was told quiet bluntly whilst in his own, you have terminal cancer and 2-3 months to live.  A week later after being transferred to a Liver specialist hospital we were told that Dad could have Gem/Cis once his bilirubin level was low enough and that they had had a great success with this treatment.  To us at the time this meant years not months. A few weeks later a meeting with the Oncologist didn't go as well as we hoped when he said "this treatment won't cure you just give you a few more months" something at the time we didn't want to hear.  As a daughter watching your Dads face crumble and fill with fear is something I wouldn't want my worse enemy to go through.  That night I worried that would it be worth the chemo effects for just a few months more, the answer was yes it would as my Dad would still be here with us and even then I was looking for trials or anything else that could prolong my Dads life. 

Chemo or any other treatment has never got to become an option, Dads bilirubin has never been at a safe enough level, the tumor blocks the bile duct and the stents are useless, his only relief from the bile is the external drain.  This news was given in September, this time by the Clinical Nurse Specialist after Dad had had his external drain, she told us 3-4 months max and Dad would just go more tired and eventually enter a coma. Mom went to pieces and it was the longest journey home. Our hopes had been pinned on Chemo and now they had been dashed. 

Dad is in that 4th month now and apart from being more tired he said he feels no different than he did in September.  He looks thin, which is so hard to see but he's still got that sparkle in his eyes.  I now wonder whether chemo wasn't meant to be for a reason, perhaps Dads quality of life would not have been so good and the summer days out together wouldn't have happened. Dad has refused hospice help at the moment as he wants to keep things as "normal" as possible.  The DN come everyweek and his BP etc are all fine, no fluid retention and most importantly no pain, he can still take care of himself and doesn't need Mom to help him with anything.  When the time comes then we will call on home hospice help, and if Mom feels she can't cope then Dad has agreed to going into Hospice.  I know that day will come sooner rather than later but for now we take it day by day.

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

Re: Article on Hospice by Atul Gawande

I think the thing about Dr. Gawande's article that made me the saddest was when he said, "The end comes with no chance for you to have said goodbye or

Re: Article on Hospice by Atul Gawande

I just finished reading this article and it made me feel better about our decision to bring Hospice on board. It also makes me realize how tough my Judy is. Watching the progression of this disease from the beginning, April 15 2009, to where Judy is now, I have to wonder if we should have brought Hospice in sooner. Her quality of life has certainly diminished, not to the point where she can't do things for her self, but the constant pain and being just plain sick all the time would drive me crazy. From the beginning all decisions pertaining to treatment has been made by Judy. Now that Hospice is coming to the house all decisions are still made by Judy. I appreciate that is how it goes, but sometimes I think she lets her pain go to far before she will take a pain pill. I wish there was someone to tell her a schedule to follow so she wouldn't have any pain at all. There are instructions on all the medication but no set schedule. Maybe I'm just a big baby because I DON"T like pain. Surely when it gets too bad she will take meds regularly. So far that is the only thing I can complain about. Judy is still in control of things and I'm worried that when the time comes that she can't make these decisions, who will? I hope they let me, or listen to me. I am scared if they don't hear it from Judy they will not do anything.  Thanks for listening.

Re: Article on Hospice by Atul Gawande

Hi Tommy,

Does Judy have a Living Will or Durable Power of Attorney for Health Care?  In these legal documents, she can state what she wants to happen if she is unable to make decisions and she can specify you as the person to see that her wishes are honored.
 
Betsy