Sunday, July 14, 2013

HCR -- End of Life Anecdotes

This poignant story was among the comments at The Health Care Blog. The post is nearly a year old and has attracted over 250 comments. Unfortunately, the first two hundred no longer appear. 

Before it disappears I'm catching this one for future reference.

Barbara Ford says:
July 14, 2013 at 7:50 am

Almost 40 years ago I worked nights in a hospital as a certified nursing assistant. I was 18 years old. One of the duties of the night CNA was to give the preparatory enemas to patients undergoing diagnostic testing that day. One night, I was working with an elderly woman with a diagnosis of advanced cancer, in pain and very weak, but lucid. She was scheduled for a barium enema, and I was to do the prep. She told me that she didn’t understand why she was having the test, didn’t want it, and wanted to be left in peace to die. I talked with her for some time, then quietly said ” if you refuse the preparatory enema, they can’t do the test.” She looked at me with gratitude and shook her head no. I reported the refusal to her nurse and she was spared the procedure. 
She died the next week. 
I will never forget her, that 5 am conversation, and, at such a young age, the sense of clarity about how senselessly the medical system can treat suffering people.

Other stories from the same thread... 

Spiritus says:
July 14, 2013 

I remember my grandfather who raised me since I was a child. At the age of 80 he was bed-ridden due to numerous illnesses he had. Because of his condition he had aspiration pneumonia and eventually got weaker. I treated him at home and even turned his room to a regular hospital room (with the help of my brother and aunt who are nurses). Our neighbors would visit him and they will sometimes comment that it would be best for my grand dad to be put in a hospital where tubes and monitors will be in placed. Then, I remembered what he told me when I graduated medicine that if his time comes I will let him go in peace.. So I continue treating him at home with no advance life support and when he died on his birthday I can see in his face that he is very happy. 
During his funeral I heard people talking that I made a bad decision as a doctor not bringing my grand dad to the hospital. It really made me sad. Then I realized, I still made the right decision because as a doctor you know what is worth fighting for and what is worth giving up. I always encounter in the emergency room relatives will often tell you to “do everything at all cost!” but I think they don’t really know what it means.. 
When my time comes all I want is to be with all my love ones holding their hands and not in a hospital bed hooked to monitors and on ventilator….

Sara Stein MD says:
July 13, 2013 

Beautiful blog. My 100 yr old grandmother was rushed to hospital in heart failure – by the time family arrived she was intubated even tho she had a Living Will – the hospital refused to extubate her and take her out of ICU. My mother called and said what do we do? I told her untie her hands, she’ll pull the tube out herself. And Voila – 5 minutes later she was extubated, and transferred out of ICU soon after. She lived a few more days with lots of visitors and humor and cookies, and died peacefully the day of discharge. 
When my uncle was in a vegetative state after a devastating MI, with no hope of recovery, the doctor in charge refused to withdraw life support, even with an Advanced Directive. My aunt called and said what do we do? I said go to the nursing station and request a Palliative Medicine consult, and when they arrive, request a transfer of services. Done. He passed away peacefully a few days later. 
Sometimes you have to be your family member’s advocate for a peaceful death, as much as when you want treatment.

Jacki says:
July 15, 2013

When my father had esophageal cancer he did chemo, radiation & had surgery. He lived a quality life for a year or so, but the cancer came back. The doctor gave him six months to live although he said he could do chemo & radiation again to prolong the inevitable. He was always sick & felt miserable with those treatments in the past. He felt it was pointless to prolong suffering, he couldn’t eat & all he did was sleep during treatments. He knew he was eventually going to die, but he didn’t want to suffer for a few more months so he could suffer & die later. He refused treatment, was placed on hospice & died at home surrounded by his wife, children, & grandchildren exactly 6 months later.

Michele says:
July 19, 2013

This really hit home with me. My father, age 76, had an aneurysm to the brain while watching his favorite TV show in his recliner…perfect way to go. But…even though he had a DNR, my Mom called the EMT’s, who brought him back. They airlifted him to a local hospital, who put him on life support. That was on a Tuesday. On Thursday, we finally talked to his neurologist after many tests. He told us that my dad died on Tuesday, but his body was still here. We signed the papers to remove him from life support the next day, Friday, his 77th birthday. Four very hard days in our lives…but he had what a friend called “a good death” as he didn’t suffer for years with Alzheimer’s, dementia or worse. When it’s time for me to go, I hope to go the same way. I totally respect all of these doctors decisions. Just live your life as if it’s your last day, because you never know when it will be.

colleen says:
July 23, 2013 

As a nurse for over 30 years, my spin on this is simply that Dr.’s are not comfortable with end of life issues. I believe because of their fear or lack of educational preparation, they continue to reach for another therapy from the medical/surgical bag of tricks rather than sitting down and simply saying’I am sorry here is nothing left to do.  
I walked in on a dear friend age 70 undergoing chemo/radiation for a stage 4 lung cancer with brain and multiple spinal metastasis. Her spinal lesions left her paralyzed from the chest down on her 2nd day of admission. I had been away for several days and found her receiving blood, and blood products because her blood counts were too low for chemo so “they needed to build her up”. Her mental state went from confusion to full alertness. 
Totally frustrated I asked the nurses caring for her if her oncologist had discussed her prognosis with my friend and was told Dr so and so never gives up fighting. 
I waited for a lucid moment and told my dear tough as nails friend that I didn’t think she was winning her battle. She looked at me and asked “am I dying” and I told her yes I think you are. With her spunky take no prisoners attitude she looked me in the eye and said ”well lets get it over with then” She asked to speak to the palliative care specialist, gathered her family around her and said I love you all but I am done. She was transferred to a private room on palliative care where we sat with her as she passed from her agony in comfort and dignity within 3 days. I will never forget her look of love for me for telling her the truth and wonder sometimes how much more horror she would have endured without the truth being told.
Chris O'Guinn says:
July 23, 2013 

So much of this resonates with me. I wish the doctors who treated my wife had been more honest, more forthright with me, but I think they did all they could. 
At 32, she went from seemingly-healthy to at death’s door in one month. Everything happened so fast, that I barely had time to comprehend one catastrophe before another hit. Had I known how utterly futile everything was, I would have made different choices for her–she was unconscious for the last few days of her life. 
I did let her be taken to ICU and it was the most horrifying part of the entire ordeal. Only after that did the doctors make it clear that her life was ending. And in my shock, I still indicated they should try and keep her alive. Thankfully, her parents and the doctors both intervened and told me I had to let her go. 
But my main source of anger over the entire thing was that her death was so awful. She died, choking and gasping for air. Euthanasia, in these circumstances, should be universally allowed. It would have saved her a lot of suffering. 
Thank you for speaking common sense on this delicate subject. I am sure there are those who would condemn you for suggesting that quality of life is better than quantity, but I firmly agree with you.

carla jaxson says:
July 23, 2013 

Last year, my wonderful 82 year old father in law (of 40 yrs.) entered the hospital on his own terms with COPD and several other health problems. He was admitted and, when the nurse asked about “extreme measures” being taken, he refused. No IV was started and he was given only Ativan and Morphine every 4 hours from then (Sunday pm) to the time he died (early Tuesday am). I feel that this was an assisted death, or euthanasia; no one else in our family has realized it. They assume it was a natural death. I will never say anything to them about it just because I feel that it would be very hard for them to accept. I’m in the medical field and I do understand it, I do understand it and I believe that it was merciful for him. Do you think that I’m right to believe this or do you believe that it was more of a “natural death”?

S Enlow says:
July 23, 2013 

A few years before my mother was dx’d with Alzheimer’s, she have 4 hernias that were life threatening. She signed a DNR and Medical Power of Attorney to me insisting my brother just couldn’t handle it. Until the day of her death from Alzheimer’s, I was steadfast in giving her what she wanted. It was so painful for me and still is almost 4 years later. I did abide by her wishes, but still in my heart feel like I gave up on her doing it. It pains me to this day to think of the “if’s” the “should have” the “could haves”, etc. All I can pray for is that she is happy that I upheld her choices.

Scott Larsen says:
July 23, 2013

Dear Dr. Murray - 
Thank you for your wonderful piece. Have worked in health care for over 30 years, in hospitals, home care and three different hospice organizations, as well as a kidney dialysis operator/technician. 
I must say your words and stories are a clarion call for Western medicine to take a closer look at what we do, how we do it, and more importantly, address the huge deficiency in health care knowledge of the patients we take care of. But lastly, develop a new outlook and support for health care providers working in ‘the system.’ 
Currently, I work in an ER department in one of Vancouver’s hospitals. Just know I will be sharing your poignant words with many of my Facebook friends who also work me.
Thank you again.

Bill Daringer (Patient) says:
July 23, 2013

I as a patient and a retired Medical center worker has a copy of a DNR on file at the Hospital, Dr. Office, each of my children, and at home. I know
that I will go when the good Lord calls me and after all w all will pass on .
Why make it harder on the family. I have seen families fight over this “should we or shouldn’t we let them live” when the patient wouldn’t like

ann says:
July 23, 2013

My daughter found this article while doing research for a Masters in Nursing Course she is taking. She had to check to see if it had been written by her dad, a surgeon, as it described exactly what he has said over and over again. He died in May but had prepared us for the event many years ago having made End of Life Directives. When he was brought into the ER it was well documented. There were to be no heroics. 
I can’t say it made it any easier to say goodbye but as an informed family we had to honor his wishes for a serene death.

dadski says:
August 2, 2013 

I was the doctor of record in a hospital many years ago for a family whose primary doctor was taking a vacation: the patient had “survived” a stroke but was left unable to speak or swallow and was on dialysis and a rectal tube with foley catheter: his bowel became edematous and was unable to absorb nutrients through a PEG tube. Despite a pressure relieving bed and nursing care, he developed decubitii and the IV nutrition (TPN) caused fatty infiltration of the liver and the patient completed his death process with congestive heart failure, renal failure hepatic failure and brain death. His family spent three months watching this like a Greek chorus. They refused to believe he was dead and wouldn’t let us move the body for 12 hours. They also left the taxpayer with a bill for $365000. quality of life nil, expectation of recovery nil. I believe that had they the responsibility for paying some of the hospital bill, there would have been less of an eagerness to use all measures. What his doctor and his family did was immoral

Lynn E says:
August 12, 2013

I saw the medical system do this on my mother’s last days. She was dying. They did open heart surgery on her and put in a pace maker. Her organs were shutting down and the heart surgeon argued to keep treating her. She was unconscious, bloated, poked with more tubes than I thought possible. No physician really came clean with us and talked about the reality of the situation or alternatives. It seemed we’d be neglectful if we didn’t do the open heart surgery. The last time she was conscious she was so terrified.
I would have loved to call a minister and let her go with the family and him/her there to guide her and comfort us. Her death was inhumane. I would not put my beloved dog through that.

Here is an end-of-life anecdote from a physician, regarding an infant. 
(Incidentally, the number of comments in this thread just passed 372 and I receive email notices of more almost daily, most of which I don't add to this collection for one reason or another.)
Cynthia Soghikian Wolfe MD says:
August 13, 2013

I agree wholeheartedly with your original article. I have always had a strong, strong sense of when heroics are good and when it is time to stop.
When I was a lowly resident on a pediatric rotation at a huge hospital 1982, I was given the job of sticking new IVs and central lines into a 18 month old who had spent 99.9%of his life in the hospital, since he had been born with a congenital heart-lung condition from which he would never be cured. His mother had three other children and a husband at home, but she spent her days by this child’s side, with love and patience. One day I asked her if she ever thought about stopping all the treatments which were being given to her son daily – and she surprised me by saying “YES, all the time. He suffers so much and there is little hope.” I asked her if anyone had talked with her about choices, and in great surprise and hope she answered “Do I have a choice, a say , in what we do to my baby?” I told her she absolutely did and I told the team of physicians about our conversation. They arranged for multiple discussions with the parents and their priest, and the heroic measures were stopped and the patient went home to be with his siblings and died within a few days. The next thing I knew, the topic was being presented and discussed at a Grand Rounds simply because the idea of giving parents a choice in the decision making to NOT treat was apparently completely unusual to them. Thank goodness that since the 1980′s there has been more movement towards patients making decisions of all sorts with their medical providers, instead of the patriarchal way.

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