Article on Hospice by Atul Gawande
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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.
Hi Marion,
Thanks for the article. Very interesting. I would love to learn how to talk to my doctors more effectively.betsy
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.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,
Marionlainy….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
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
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
BetsyLainy, 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
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.
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
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……….
This is an amazing article by Dr. Gawande. Its rather long but well worth the read.
Betsy
http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande
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