rational decisions on dying

ImagesSteve Ratner wrote an article in the Op-Ed section of the NYTimes called Beyond Obamacare.  He writes about not only the high costs of healthcare in this country but also about the tough decisions we need to make to get the costs down.  This is only one issue where big decisions are going to have to be made in order to get our country back on budget and to fiscally responsible place. 

What resonated with me in the article is this:  No one wants to lose an aging parent. And with price out of the
equation, it’s natural for patients and their families to try every
treatment, regardless of expense or efficacy. But that imposes an
enormous societal cost that few other nations have been willing to bear.
  I have written about this topic before after losing my Mom quickly to cancer almost two years ago.  

We were having a conversation about this exact topic on Friday night.  Our friend is a surgeon and he is also an incredibly smart pragmatic individual.  Most people will do anything to keep their aging parent or Grandparent alive.  They will do whatever it takes even if that means surgery at 85 years old.  The risks are high and the costs to the medicare system are enormous.  As our friend says, the decisions we made are not the norm and he applauds us for doing so. 

Our Mom had surgery to find out what was happening inside her brain.  Once we knew the answer, our decision making changed.  There was absolutely nothing we could have done to bring her back to the independent, crossword-loving, book reader, theater goer, lover of the arts, travel lover, witty, amazing chef and political junkie that she was.  It was not in the cards.  She had told us many times over the years, even when she first got sick, if I can't be who I am, I do not want to be. 

I listened to her choices and although difficult, I thought with my head and in reality it was my heart too.  We let her go.  We didn't make her suffer through a bunch of attempts to just keep her alive.  I saw the medical bills that we never paid for and they were extraordinary.  Probably more than she ever spent her whole life on medical treatment.  It was paid for by medicare.  As a die-hard liberal, my Mom would have been appalled to see those bills.  She would have wanted them to figure out what was wrong before even having the first surgery but supposedly they couldn't.

In the end it was quick but I know in my heart we made the right decisions.  Maybe because it happened so fast that the mourning has been strange.  I sort of feel like she is on an extended vacation.  As my sister says, I hope she is having a nice time. 

Comments (Archived):

  1. Susan Rubinsky

    I completely agree. My grandmother died at home (well, my Mom’s home) a few years ago at age 97. My Mom, a retired nurse who specialized in home care and hospice, knew my grandmother was sick in the last few days and when my grandmother refused to go to the doctor, my mother agreed. She died a few days later. My grandmother died at home with dignity after a very full life. I don’t understand why anyone would want to try intervention at that point except for pain relief.When my son was born as a preemie I had to make the DNR (Do Not Resuscitate) decision. After talking with doctors, I decided to allow resuscitation until after a brain scan which would expose a common preemie problem: bleeding in the brain and consequent brain damage. I decided before the brain scan that if there was bleeding on the brain, I was going to activate the DNR. The brain scan came out fine and I now have a healthy 15 year old but I know I would have chosen the DNR if I had to.Part of life is death but so many people seem to forget this. The questions of cost are important but people are emotional during such difficult times and don’t make rational or good decisions. Planning for your death ahead of time makes a lot of sense. Everyone should have a life will and also details instructions for what is and is not acceptable to that person — a guideline for your family to follow when having to make such decisions.Some of the thoughts I remember considering regarding my own son were: There is a reason that my son keeps forgetting to breathe — it’s because his body is struggling to live. If there are issues such as brain damage, why extend the life? How is that the best thing for him?And it’s appallingly wasteful from a financial perspective. (You should see the NICU fees!) I know I would not want to live if I became chronically ill and was unable to live my life independently. I wish all states would pass laws such as the ones in Washington State and Orgeon where you can get a prescription that is designed to help you commit suicide if you are chronically ill. Not only does it make sense from a financial perspective, it makes sense from a quality of life perspective. And, it’s a hell of a lot better than kicking off like the Eskimos on an arctic ice flow.

    1. Gotham Gal

      Part of life is death but so many people seem to forget this.I couldn’t agree more.

  2. ErikSchwartz

    When my mom died it happened pretty quickly. She had a heart attack, there was a week of ICU and then she died. But easily a third of her lifetime medical expenditures were made in that one week (which was without a doubt the least comfortable and unpleasant week in her life).Better EOL decisions are one of the two main ways we can turn healthcare around in this country.

  3. Wavelengths

    My grandmother, in her 90s, was diagnosed with liver cancer in the late summer a few years ago, and she made the decision to just let things happen.Wife of a dairy farmer in Massachusetts, schoolteacher, traveler, stern when necessary but also witty and whimsical … well, you get the picture. She only lasted a few months, but in that time we did what we could to enrich her days. I remember going to a farm outside of Boulder where you could find the sweetest, freshest corn. Grammie was a tiny woman, with no appetite at the time, but she packed away 3 ears, her eyes twinkling as she savored one of her favorite treats.I fed her Thanksgiving dinner at the hospice, and then helped her back to bed. I had taken a course in “healing touch,” and as I held her hand I pictured the healing energy flowing into her. Then I remembered a voice from a dream I’d had shortly after taking the course: “Sometimes healing is about allowing the body to die when it is ready.”So I held her hand and talked with her about all the best memories I could remind her of from her life. And I told her that she could let go when she was ready. She fell into a deep, restful sleep. In the morning I got the word that she had died in the night.I applaud your courage in honoring your mother the way you did.

    1. Gotham Gal

      thanks so much for sharing your story. Made me teary

      1. Wavelengths

        “To every thing there is a season, and a time to every purpose under heaven. A time to be born, a time to die …”I believe we enter a new level of emotional/spiritual maturity when we can accept this with our heads AND our hearts.No one can tell another when it is time to go. If our medical wizardry can keep our loved ones here, and they continue to have quality of life, by their own definition or that of those around them, then we can be grateful for that resource. Yet, we all know of times when the medical machinery charged in and didn’t help anyone.We do need to be informed, on many levels, and your blog today is part of opening discussion to exchange information on this important personal level. Thank you.

  4. Mike Hart

    One of the reasons I enjoy your blog is that you go from motherhood and apple pie to death and dying.My stepfather died of old age a week ago at age 94. We were lucky in that there was no debilitating disease and no big decisions to make other than when to put him in hospice. Others, like yourself, aren’t so fortunate.Our society is becoming much more educated on death and dying. Having an open discussion about it is the first step. My baby boomer generation has seen enormous strides in healthcare during our lives and some have been seduced into believing we could live forever. Although we’ve been able to increase life expectancy by about 10 years during my lifetime and improve the quality of life for seniors, everyone eventually dies.We will continue to make better informed EOL decisions, but I believe it needs to be through education and not mandate. It’s a very personal decision and needs to be supported in multiple ways.

    1. Gotham Gal

      Being able to have these conversations is absolute the start

  5. Guest

    Thankyou Joanne for your wonderful blog and for covering such a wide range oftopics. I lost my dearest mother just about six week ago and I also liketo think that she is on vacation. It is too difficult and painful tothink that she is not here. She battled leukemia for over three yearswhen they had given her only six months. For most of those three years, she had a goodquality of life, although it was more because of her attitude and fortitudethan of her medical condition.My mother who before her illness was anenergetic, life loving 72 year old and who was the center of many people’suniverse, became dependent on the blood transfusions, chemo treatments, pillsand medicines and … but they kept her alive. Duringthese three years, she had a few relapses but she came back and who was to sayif we should have given up on the first relapse and let her go. She wasat peace with her terminal status but she fought to stay alive for us and gotto see her grandchildren for three more years and we are deeply grateful forevery extra day that she had.As her medical coordinator andadvocate, I saw and learned first hand of the inefficiency and incompetencythat exists even in the best of medical facilities and even though I understandthat end of life treatments are a complicated and emotional decision for thefamilies and a costly proposition for society, I think we should really focuson streamlining the delivery of health care first and the cost savings thatwill come from there. We will go far asa society if we tackle that sooner rather later and this is where technologycan really help. We should all beadvocating for that.

  6. Marjan Ghara

    Hi there. Having trouble with my disqus account I believe. It was me who posted the entry that is appearing as Guest.

  7. SL Clark

    My wife worked in a cardiac lab. I can’t count how many times she would come home in tears, an invasive procedure to “save” an additional three to six months of life. For the most part, Americans FAIL when it comes to our bodies, just the words sex and death cause anxiety.As we continue to embrace “sick-care” not “health care”, I do not see a path where the rigged “maximum profit” systems chooses wisdom. Big Pharma and the AMA like the way things are, so the working poor (every 99%) is sold their enormous box of fear.Joanne, as you discovered, families control this issue and as noted, few ever make the brave choice in letting go.

  8. Guest

    I’m glad you continue to write about this. A good friend of mine lost his sister a few years ago to cancer. She was my age, 31. When the leukemia came back she made the decision to die with dignity and “Live it up” for the last six months of her life. She blogged throughout her entire journey and when she couldn’t see anymore, her sisters took over. It upset a lot of people that she did not want to keep fighting, but she chose quality for the limited amount of time she had left to experience here. Such a brave choice.

    1. Gotham Gal

      That is incredibly brave at that age

  9. ellen

    I don’t think “most” people would do everything possible to save a loved one no matter what. In my family we have always erred on the side of caution. Doing a procedure can in many cases cause more harm than good. I always look at the risks as well as the benefit. Since their are so many deaths that could have been prevented at hospitals, you have to weigh and watch everything and every person who interacts with the patient.There is so much lack of communication at hospitals many mistakes could be prevented and there would be a huge cost savings all around. You will soon see that a medicare patient will not be readmitted within 30 days of a prior admission because the hospital will lose a yearly percent of their medicare receivables if too many patients are sick enough to come back within that time period. When doctors receive bonuses for not doctoring and preventing sick people from hospital admissions, you will not see savings but rather a lot sicker individual entering the hospital and that doesn’t save money. Our system is so screwed up.What I don’t understand is if the cost of healthcare is so out of control and there is going to be such a crackdown on doing procedures and tests etc. why are so many corporations buying up hospitals this year?May it be that these hospitals will get incentive money from medicare and the private insurance companies for not doing things and that is how they will add to their profits? Kind of like getting money for growing corn that is just dumped.

    1. Gotham Gal

      i hope it is not like getting money for tossing out corn.

    2. ellen

      Yes, it is. You admit the patient to receive medicare money then after a day or two you heave mother out to receive the bonus incentives not to treat. It happened before with managed care and it will happen again. Very sick people were pushed out of the hospital because medicare only paid for a certain number of days in a diagnoses related group but then the hospital would readmit the patient to start the process over again instead of just getting the patient the needed treatment during the first admission. Now the hospital will be monetarily penalized if the patient is readmitted within 30 days of a previous admission. Now will sick people be readmitted. No, the hospital will just tell them they are not sick enough to be readmitted. Just follow the money.