Taking Responsibility for Death
In the op-ed section of the Sunday Times on March 31st there was an article by Susan Jacoby called Taking Responsibility for Death. She begins the article standing by her 89 year old mothers hospital bed and her mother asks the doctor if there is anything he can do to give her back the life she had last year when she wasn't in pain every minute. Unfortunately the answer was no and because of that she left the hospital never to return again until her life ended.
Her mothers worst nightmare was that she might be kept alive by expensive and painful procedures when she no longer had a functioning brain. My mother had the same fear. Her biggest fear that she would have a stroke and not be able to function in the way that she was accustomed to. She didn't think that it would be brain cancer that would catch her by surprise.
Jacoby brings up a topic that nobody really likes to talk about. That we spend ( yes we as in Medicare ) the majority of money on health care on the end of ones life trying to keep them alive instead of spending the majority of it on preventative treatment from the time you are born. As my Mother used to say, it is just crazy.
My Mom found out that she had brain cancer and died six weeks later. In that six weeks she had brain surgery, chemotherapy, hospice and spent a few weeks in the hospital. The bills were extraordinary, more than she probably spent on health care her entire life and we didn't pay for one cent because of Medicare. That's crazy.
I have always been pragmatic about things which is probably why my Mom put me down in her will to be responsible for her medical decisions. Growing up she would always say to us, "if I get like that ( as in serious ill and not being able to live the life I want ) then just kill me". She meant it too and she repeated those words often. Although my parents have been divorced since I was in High School, my father is a believer in the same mantra.
After my Moms surgery the cancer grew back quickly and larger in a very short time. New doctors wanted to have surgery again. I asked the doctors the exact same question that Jacobys mother asked her doctor. Can you tell me that my Mom will be able to go to the movies, do the crossword, read a book, talk about any topic (particularly her love of politics), take care of herself and walk home from the museum by herself. The answer was no but we could possibly extend her life so she could just sit on the couch and you could be with her. To my Mom, that was not a life. BTW, if she had expressed the desire to have that no matter what, we would have done it and it would have cost the tax payers hundreds of thousands of dollars for those few weeks or perhaps that month.
We all came to the conclusion to let my Mom go, let her go with dignity and not with invasive medical treatments so the doctors could learn from her and her brain cancer. It wasn't hard to make that decision because I knew that she wouldn't have wanted it any other way.
The line that the NYTimes pulled out from the article and bold faced it on top is "we value personal freedom but fail to make choices about our health". As the Supreme Court ruling is still out there about our health care, as Americans we should give some serious thought to the end of our lives, the cost and the pain and of course it depends on our age. If my Mom was 40 she should have fought as hard as she could to keep alive but she wasn't, she was 72…young but a full life.
The good news is she was insured. When people say that they don't need insurance because they are healthy….my Mom thought she was healthy too until by some random dealing of the cards when she happened to get brain cancer. There is no doubt that everybody should be insured (the definition is to make sure we are insured so if something happens we have insurance ) but there should be some serious questions about the end of our lives, the cost and getting through the end with dignity so our families can remember each individual as who they were not an object for the medical community.
Tough decision. Even tougher when someone is 35 and your entire world. Though talking about it beforehand as we did (and I’m glad you did) is key. It removes the selfish emotions from it. You do what’s best and respect wishes as fucking difficult as that is.As for healthcare. It’s a joke. A flat out joke. We should be embarrassed as a country. It will only get worse. Sometimes it takes a collapse to rebuild something better. Hopefully that will happen with healthcare. The collapse is inevitable. The rebuilding properly? That I’m not so sure about.Sorry again for your loss. It stings a long long time.
healthcare is a total joke. there is no doubt that collapse is en route. wait until one of the people in the house or senate have a few bad healthcare experiences with extended family…then perhaps there will be a wake-up.
Many times this is not the case. I have seen perfectly healthy elderly people who have a minor issue blowup into a very a life threatening illness because a doctor doesn’t want to do a minor inexpensive test at first, because when you are older than 65 your life has become diminished and they are “saving the system money.”If you are 70 and come into the hospital with a neurological problem, soon a neurosurgeon will have to go in front of a utilization board to be able to give you lifesaving brain surgery. If you happen to have something that can save you when time is of the essence than you are out of luck.Joanne, before your mother had the first surgery did you know for a fact that thesurgery might not have worked for her? Did the doctors tell you that it was only going to prolong her life for a few weeks? If they did, then maybe you would have made a different decision. Maybe you and they thought that she could have been saved but you only find out later. Maybe you and your Mom were hopeful that she would have lived longer with a better quality of life.My sister decided that she was not going to treat her tumor. She was not going to spend her precious time in doctors’s offices. Luckily, she is still around. Her decision. She thought the doctors would screw up and leave her a cripple with a constant need of continual care if she had brain surgery.Sometimes the elderly are given these procedures because if you don’t keep doing all this stuff in the hospital they are dumped out into a backroom in a nursing home at their own expense after 60 days.But I have seen the reverse as well. Elderly, are dumped out too quickly before they have a decent chance of getting better. Doctors don’t get the diagnoses right and the elderly’s rationed medicare time is up after a few days.Remember medicare is not free care. People have paid into the system their entire lives with private insurance and then when you are 65 if you are eligible for medicare NO ONE ELSE will insure you. You must go on medicare and of course you buy the supplemental insurance for the 20 percent medicare doesn’t cover. If you have paid into the system your entire life and don’t really use your insurance money, don’t you think when you are old and have a problem you have a right to be treated?My Mom had a minor problem and the doctor would not do any tests until she was practically dead from internal blood loss.
The system sucks.If we had known prior to surgery that my mom would not have had any chance of success because they were honest about the cancer she had I believe we would have chosen to do nothing
Joanne-You,sometimes, never know ahead of time. It is the damned if you do or damned if you don’t situation. If you do nothing, are you missing an opportunity at life or if you do the procedure are the risks and pain worth it?My own family is very cautious with procedures and surgery, whereas my husband’s family is do everything to save a life.I,certainly, go for the quality issue but as I take care of my sister I see her adapt to a smaller world.
JoAnn,Thanks or this post.My Mother is 94 and lives with me. She realizs she’s near th end of hr life and has made her wishes known.Last summer she spent about a month in the hospital becaus of cardiac issues and I had to make our family undrstand that the “no heroic measures” order was precisely her directive.As someone who had a life altering stroke, I completely understand ythe need for medical directives and the requirement that I hep my family know what I want an how I should be treated medically.AS always, great post!Jim ForbesEscondido, CA
Important blog Joanne. I read Susan Jacoby’s last book, and her argument is sound. I think there are so many chinks in armor of healthcare starting with insurance but also how long do you keep someone going. when is enough enough? Just because science can extend a life is it a life. The list you write about what would make your mother’s life valuable is so touching and real. To sit in a chair in a diaper, not being able to form a sentence or understand the world around you, I don’t think many of us would sign up for that. I’m not saying that’s how bad she was, but it sounds like it wasn’t’ far. I do think it’s important for people to put instructions in their will when it’s time to pull the plug but that is later than you are talking about here. It’s what happens pre that stage. I watched a friend of mine die seven years ago, he had terminal cancer and was in the last day literally, at that point he was strangling to death, he had maybe hours, they kept giving him medicine to keep his heart going, his wife said can you stop doing that he is suffering far too much. The hospital said we are not in the habit of killing people but keeping them alive. So they gave him an extra horrendous twenty five hours as opposed to a reasonable four hours. Thank you for writing this blog.
my grandmother was given the same treatment. she was 94 and the medical staff continued to give her medications to keep her going. why? when she became aware of what was happening, thanks to the drugs, she became so angry and frustrated. i understand that doctors are trained to save lives but they should also be trained to give people their dignity.
In Massachusetts most of this stuff of prolonging life does not happen. The elderly are booted out of the hospital as fast as possible and even if someone is viable and in total control, the hospitalists can’t wait to boot you out. You get exactly 3 days at most before the social worker comes in and tells you that the hospital can’t do anything more for you and out you go. I have seen people with stokes who could get better with a few extra days in the hospital but out they go because the hospital can get a bonus payment from medicare for getting the stroke victim out before the allotted drg is used and reuse the bed for someone else.Remember every disease has a diagnoses related group and the hospital does not get any more money by keeping a medicare patient in the hospital. A drg tells the hospital exactly how much medicare will pay for a stroke and if the patient takes longer to get well then the hospital has to assumes the financial risk.Very sick patients are sent home from the hospital because their allotted days were used up only to come back a week later. Now with the aco’s and edicts not to allow certain patients back in you won’t even need these conversations.
A VERY important topic.Resources for communicating your wishes with loved ones:1. Free advance health care directive forms (e.g. living will) for each state from the “Caring Connections” program of the National Hospice and Palliative Care Organization (NHPCO), a 501(c)(3) non-profit organization: http://www.caringinfo.org/i…2. “The Living Will: A Guide To Health Care Decision Making” article: http://wings.buffalo.edu/fa…3. U.S. Department of Health and Human Services comprehensive organ donation website: http://www.organdonor.gov/i…4. “Funerals: A Consumer Guide” from the FTC: http://www.ftc.gov/bcp/edu/…
thanks for these links…
great picture of The Jude. It is so her…xo
doctors not only indicate that surgery and chemo might save a life, they indicate without it – cancer left alone would be extremely painful. Really, more painful than what you are left with after brain surgery and several bouts of chemo? I think we all realize that life cannot be put back to the way it was, as Joanne thoughfully mentions – but don’t we all agree to it because we don’t want them to suffer and we think this is a better alternative? I think we would feel less guilt by following this path – otherwise, we will always doubt ourselves forever. Either way – it’s painfull for all. A recent study out by the Medical profession sites that 30% of family members dealing with a loved one with cancer is more likely to have a heart attack. So we need to take care of ourselves to help our loved ones. We had a family member die over the weekend from brain cancer -and ironically her husband had a heart attack last week – the same time the article was released. Be thankful everyday you have !
agree…every day is a good day. regardless of surgery now or later, pain is going to come.
I have twice been victimized by the U.S. healthcare system, its demonic system of incentives, and the circus of health care providers masquerading around as all knowing with God Like syndrome. The first time was in 2006 when my second daughter was born with a serious but potentially correctable birth defect. She might have survived or at least not suffered so much on the way to her eternal journey had she not been badly injured at birth, delivered at the wrong hospital, by the wrong delivery team, who simply didn’t know they were handling a child with a congenital hernia. They could have known of course, if only our OBGYN had ordered up the late second and third trimester ultrasounds we had begged him to do. Not in the standard of care he said, no need he said, strong heartbeat he mentioned, you guys are good to go he said. So instead we trusted, and because of it our infant daughter would pass slowly, painfully, in front of our eyes, for three straight months, in a medieval ICU at a cost of over $1.3m.I am a Navy SEAL by trade and I know a lot about PTSD and suffering. I have never suffered like my wife and I suffered losing Eva the way we lost Eva. The Health care system didn’t just lose my daughter in 2006, it killed us across that process as well. Did you know that of industrialized nations, the United States’ Infant mortality rate is ranked somewhere btw 38th and 50th… higher than Hungary and Cuba? Why does it have to be that way? Why do we spend so much money while allowing the system to serve us worse than the vast majority of other industrialized nations? And as if I didn’t learn the first time…the second time was a few years later when my 93 year old father was convinced to undergo a surgery to correct a descending Aorta. He would spend 5 weeks post surgery in ICU on life support, unable to kick start his life after such an invasive procedure. I never spoke to him again after he went in for the procedure, just held his hand and watched a single tear roll down the corner of his eye every once in a while. “If you don’t get this surgery you could die immediately within minutes in the middle of Costco” the physicians said. And so he chose to undergo an elective surgery that might have prevented what would have ultimately gave him the best finish any of us could really hope for.The morning of his death the on call physician would come in and refuse to assign a time of death on his chart because “he still had a heartbeat”. To which I remarked: “It’s his fucking pacemaker still firing off you retard, now sign the time of death so I can get the fuck out of of here.”So here is my point: The entire health care system trades off of fear in closed markets with wickedly aligned incentives while taking advantage of peoples hopes. The system is filled with thieves and zombies but has genius miracle workers in it as well. These miracle workers, battling the system and putting their professional career on the line to always do the right thing are the people that need the help of the brightest entreprenuers we can put toward fixing the problems.
wow. thanks for sharing your story. my heart goes out to you. just unnecessary pain and agony from a system that is beyond broken.
Dear Mrs. Wilson,Thanks, it is going to take people like you and your husband, and the types of entrpreneurs you back willing and unafraid to wade into the system and create the counter systems that can radically deconstruct the way it is.
An extremely heartfelt story. A simple ultrasound while your wife was pregnant might have helped but yet the doctor is pinching pennies because he might have to call your health insurance provider to get a preapproval and that would take his time. After all it was not customary, so instead the health insurance provider pays out much more later and you have so much sorrow and loss.I, like you, felt after my Mom’s illness thatI had ptsd as I stayed with her every night at the hospital. No one would feed her except me and if I had to leave, when I returned they just threw her meal in the trash.