I Signed Off On My Parent’s Death Panel

Mom and Dad

The phrase, “Death Panel” is the biggest crock of shit invented by the Right since the phrase “Tax Relief.” End of Life Planning is an essential part of addressing death. It doesn’t matter if you believe in eternal life in some kind of Heaven or if you believe in oblivion: You are going to die. At some point you need to consider dying.

When my mom was diagnosed with Breast Cancer, we talked about my parents last wishes. Both of my parents signed a living will and talked, however briefly, about what they wanted. Long before this discussion happened, my father had to take care of his aunt Irene’s affairs. While my dad was Irene’s only surviving family member, her second husband’s family became more interested in her the older she got. Irene always said, “don’t worry Pat, you’ll get everything.”

Now my dad didn’t want anything. Irene’s estate was full of kitsch and junk. Gleason’s have a pack rat gene (my brother is the only exception) and towards the end of her life, she became increasingly senile.

When she went into cardiac arrest, my father raced to her side. When he reached her, he was shocked to the point of anger. Her chest was not uncovered, her ribs were cracked so they could stimulate her heart. He couldn’t see her arms because they were lined with tubes from various IVs. She was mostly naked, lying on the hospital bed. I wasn’t in the room when he saw her–I was maybe thirteen–but when he told the story, he was the angriest I had ever seen him (and would see him until I was a teenager). He told the doctors to, “Cover. Her. Up.”

Text cannot impart how cold his voice was, or how forceful his tone was. My dad was a lawyer, with a fantastic ability to use his voice to get what he wanted. The doctors argued for a second before they relented.

That experience haunted my dad. Given Irene’s fraility and her advanced age, he thought it would have been more dignified if they had let her pass away. There was no need to crack open her 80 year old chest to apply direct stimulation.

With this episode firmly implanted in my parents mind, my mother’s oncologist had a conversation with my mother. She told her, “There may come a time when this is not a fight worth fighting anymore. When the chemicals and procedures you will need to take will ruin your quality of life. You won’t be yourself anymore. You’ll just be the chemo.” I know this occured privately, as the day before my mom died, her doctor repeated those words. It infuriated my aunts. They thought it was highly unprofessional, unethical and immoral–especially at a Catholic Hospital–for this doctor to tell my mother, a woman who had fought cancer tooth and nail, and yet with grace and dignity, for over twelve years, that she should give up the fight.

But my mom knew. Her cancer had metastasized again. This time, there were microtumors in her brain. They impacted her speech. The gave her seizures. Those tumors robbed my mother of who she was: a talkative, impassioned woman who was always on the go. My aunts, my brother, my future sister in law and I all wanted her to stay. We wanted my mom to be around for decades to come.

What we wanted was selfish.

My mom wanted to live her life. She did not want to exist for chemo and radiation treatments that would make her less of who she was. My mother didn’t fear death either. She was a devout catholic woman who attended mass and believed in most of the teachings of the church fervently (except the whole gay marriage thing, the treatment of homosexuals by the church, women clergy and on priest celibacy). She also missed my dad terribly. Weighing the options, she chose to pass away. I believe if she wanted to, she could have fought on for another year before her body finally gave out. Her vitals were good despite the tumors. She chose, in the end, to die with dignity.

My parents planned their end of life decisions. They died the way the wanted to. Every other person in this country deserves the same. To get that, they need those options. End of life care needs to be discussed–and not maligned–as a death panel.

44 thoughts on “I Signed Off On My Parent’s Death Panel

  1. Marty, thank you for reaching deep and sharing this. I’m sure it wasn’t easy. There’s a strong “courage” gene in your family too, that much is obvious.

  2. I think end-of-life discussions also serve another purpose. They give people a feeling of control over an ultimately uncontrollable situation. They also provide a groundwork for families. You don’t have to wonder what someone’s thoughts on extreme measures are; you’ve already discussed it.

    Thanks for talking about this Marty.

  3. It takes a lot to talk about death and wishes. It takes even more to do it with a parent. Sometimes people don’t even follow up on those conversations so “a toast to you” !

  4. my mom passed away from breast cancer too but she only lived a year with incredible pain. I understand all too well about letting go.

    My mother and I had made a pact when I was 10 that if either of us got that sick we would allow the other to pass with dignity.

    At 43 I had to honor my commitment to her and that promise and I did. My father followed her 5 years later. Here at 51 I am an orphan and my parents are constantly with me and my partner in spirit.

    I know your parents are also with you, Marty.

    —-Bonju Patten

  5. Thank you for sharing Bonju.

    Margo: I have no idea why I picked that–but I did a long before my parents passed. I’ve just managed to keep it.

    Nikkos: Thank you, brother.

    Terry: Thank you

    Serena: We need to talk over more beer. You a FIB yet?

  6. I helped my mom die at her home, in her room. Hospice was wonderful, my three older brothers, not so much. When it came time to make “arrangements”, I knew mom had written instructions in the family Bible. She had even written her obituary and the Church Pastor had her “doctor’s cure for the blues” as a sermon. It was good for us. The brothers, still, not good.

  7. Hi Marty… just stumbled on your blog via the “just pressed” tab on WP. Glad I did.

    This was a very moving post. Your mother’s decision to choose her means of leaving this world reinforces my ideas and beliefs about dignity.

    Thanks for sharing.

  8. My wife is a breast cancer survivor, and we are both under 50. BUT, we have both discussed this very topic, and I agree that it is important to get this sorted out NOW while the mind, and wallet, are at their peak.

    Revisiting the “plan” every now and then is the optimal idea, but a plan needs to be in place first, and there is no better time than now!

    Thank-you for a very thought-provoking and obviously very personal post.

    Some people just don’t get it, do they?

  9. A very touching story. I have very specific wishes in the case of my disability. My sons know of it, and though they might not agree, they have agreed to disagree and see my wishes carried out. I think end of life counseling is essential. Nobody wants to think about dying, but it’s going to happens, so it sometimes has to be forced on people, for the good of their family, and for the good of their selves.

  10. After my siblings and I sat with the practioner determining what to do and not to do to resuscitate our dying dad, I decided not much else in my life could ever be called “stessful” again.

    Thanks for your thoughts.

  11. When the quality of life isn’t better than the quantity of life it’s a smart person who recognizes it’s time to check out. Besides, we’re all headed down the slippery slope and there’s no negotiating your way out of it.

  12. You make an eloquent case as to why doctors should be compensated for visits discussing end of life care. Too bad this important issue has been so distorted by opponents of health reform.

  13. I agree with you that end of life discussions should take place. Where many people draw the line is having our government involved in something so very personal. I think some of us should have a healthy fear of what could happen if our government gets too involved in our lives. Calling it a “death panel”…yeah is a bit extreme. But a thought provoking conversation about the risks we take as a country with government funded healthcare shouldn’t be too much to ask for right?

    • Thought provoking would be wonderful. Discussing the role that government should, and should not, play in our lives is also a constant debate. It can be a healthy debate. Typically, it is neither a debate nor healthy.

  14. i am an american nurse working in the UK for the NHS. this whole healthcare debate touches a raw nerve for me. i came her fully believing in national health care, my support is now tempered and realistic.

    my overwhelming feeling is that no matter what healthcare system is available, people need to accept that life comes to an end…the more you fight it (in certain circumstances) the uglier and more painful the fight gets.

    thanks for a lovely post and we all must fill our lives with friends, family and love!

  15. thank you for writing so openly… i am a nurse working in a hospice, dealing with cancer patients on daily basis… you`re not selfish, you`re not a bastard, its a natural reaction when one want to keep their loved one stay safe close alive…but sometimes its better to let go, let them pass away in peace… watching patients dying in pain, confused, soiling their own bed sometimes makes me think- what if they knew whats actually happening to them- what would they choose to do.?.
    thank you for your thoughts.

  16. Nice post!
    It is difficult to talk about these matters with parents, but very needed. I was lucky my parents made decisions 20 years before my dad passed on. We just grabbed the folder and took care of things without a lot of problems – and there are 5 of us kids with often very different opinions on things.
    The whole “death panel” crap is just another scare tactic by the wrong (hate to call them the “right”) to use fear to control their followers. Rule based on fear. Pretty sad.
    Thanks for your post!

  17. Marty, this is an awesome post, and boy, your parents sound like awesome people. Look, I don’t think anybody–even my fellow “evil right-wing conservatives”–is saying that end-of-life planning is unnecessary. It’s VERY necessary. It’s a decision that we all face at some point, that we all have to think about–for us, for our spouses, for our families.

    The point of those of us who oppose the single-payer portions of Obamacare is simply this–how would you feel if a government bureaucrat was able to override your mom’s and dad’s decision on their end-of-life planning? Rachel nailed it. The fear is not of end-of-life planning itself, not of making decisions of whether to prolong or whether to give in, of just how much treatment is “enough.” The fear is of some faceless government drone taking those end-of-life choices out of our hands because “it costs too much” or “we need the resources for other things.”

    • Um…”The point of those of us who oppose the single-payer portions of Obamacare is simply this…”

      There’s no such thing as a portion. A system is either single payer, or it isn’t.

      And as for giving ANYONE permission to override any preference they have in terms of their health care, I agree: bad bad bad.

      But what does that have to do with Health Care Reform? Where do any of the versions of the bills currently working their way through either House give any power to anyone to make those decisions?

      If there isn’t any language in any bill, doesn’t your “fear is of some faceless government drone taking those end-of-life choices out of our hands” become…what’s the word?

      Completely groundless? Scaremongering? Help me out here. In fact, Marty, start a new post. This deserves debate.

  18. I think people no matter what political persuasion should understand what really happened because this is a perfect example of hyper over- reactionary behavior that is prevalent and as toxic as the plague in America. The scenario plays out like this: Someone say’s something (because they can with freedom of speach right), it gets picked up by some rabid ratings hungry media puppet – or wise ass, it’s then regurgitated by others and the next thing it’s all over the net, the news and re-used by Politicians for political gain.. and by people like YOU who take it way too far, and the people are always led off target of the real issues. This is how America works unfortunately. This is a genuine concern for some conservatives and democrats, but it seems like you just want people to shut up, and NOT speak their minds. or what is it? You’re just another angry Liberal?

    • The problem I’ve had–something i think 99% of the people involved in this discussion got–was my concern over the Rhetoric. How can anyone discuss a “Death Panel” without losing their shit?

      I want an actual debate. I want a discussion. I don’t faux-debate and yelling.

      And yes, I am yet another angry liberal with a blog. But I’m an angry liberal, with a blog who will talk with people. I’ll engage in the debate as long as it remains relatively constructive. Given that you posted without leaving a real email address, and your ad-homin attacks, I can guess that you’re more interested in shouting than getting anything done.

      Feel free to prove me wrong. Feel free to debate and discuss.

  19. Condolences. We will all go through something like this someday, especially since medical technology advances.

    And, your parents made personal choices.

    Was the government involved? Should it be?

  20. I don’t normally get this many responses. First and foremost, thank you, everyone for sharing your stories. It means a lot to me. Those of us who have lost a parent (or both) know exactly how difficult it is to address these issues.

    To address the concern about government involvement, I am more than willing to discuss in rational, calm tones about what would be the best way to address this issue. Please keep in mind that my parents health care WAS government health care, as my father was a county employee. Cook County negotiated directly with Blue Cross/Blue Shield to get a fairly impressive health care package.

    I will try to keep up with the comments. I do enjoy discussing things with Linedan–even if we haven’t done it in a while–because we can talk to each other even if I’m an angry liberal communist bastard and he’s a jack booted fascist.

  21. Wow! wow! wow is all I can say. My aunt just passed away, about 6 hours ago. She went into hospice care late last week. She wasn’t stricken with any disease, per say, that was doing her in. She had developed sepsis. While not terribly old at 70, her desire to not want to linger in a bed any longer, having been confined to a bed for most of her life and wanting to die with dignity were her wishes which she made known to me the minute she went into the hospital. In fact it was so out of left field that when she said to me “I have a DNR”, while I knew what that meant it actually took me a minute to process what she had just said. It was so important to her she wanted to make sure that someone knew before we even got to chit chatting….meanwhile I didn’t think at that moment she was actually dying.
    This piece is uncannily timed for me personally, but I really appreciate your sharing your experience. Thank You

  22. this is a tough issue, and brave of you to put your story out there – I’m not sure I agree 100% with your views against freedom to make end of life decisions as individuals and your support of government run Death Panels doing so for you, but it is brave of you to put your story and feeling out there.

  23. First, Marty, thank you so much for sharing this. I said it to you earlier, and it still stands: this is an excellent post.

    Second, to those commenting, I think the first part of following Marty’s wishes for constructive, thoughtful, civil discourse (and the best way to facilitate said discourse) is to dispense with the term “Death Panels” altogether. It’s inflammatory. Using the term evokes strong emotions on both sides of the debate and makes it harder to discuss rationally. (And yes, I understand that the words are in the very title of this post. However, I’ve seen a few comments here whose tones come across as taunting and not in good faith at all. That’s what I’m suggesting we dispense with.)

    If people wish to talk about the actual text of the bill that deals with end-of-life care, it can be done calmly and respectfully. Let’s be as gracious to Marty as he’s being to us and have the kind of intelligent conversation he’s offering to host on this thread.

  24. My condolences, and in 4 days it will be the 1st anniversary of my father’s death to cancer. I went through the exact same with both him & my grandfather 10 years earlier. I definately understand and agree with you 100% and have a similar set up with both my wife & I.

  25. “The fear is not of end-of-life planning itself, not of making decisions of whether to prolong or whether to give in, of just how much treatment is “enough.” The fear is of some faceless government drone taking those end-of-life choices out of our hands because “it costs too much” or “we need the resources for other things.”

    And yet it’s currently ok for a corporate drone to make end of life decisions for us. Though I don’t really trust corporate or government entities, at least I have some say in who is representing my interests in the government.

  26. Wow. I can’t begin to Thank You enough for your candor. I share the belief we should all have a say in how and when we pass on. I’m glad your parent’s wishes were honoured.

    In a sea of what I consider to be ignorant fear running rampant in our country over this whole health care thing, it’s beyond refreshing to read your blog. And please send me whatever dictionary you’re using, cause the meanings of ‘bastard’ and ‘pretentious’ in mine are completely different than yours must be.

    May All Beings Be Happy.

  27. what you mentioned is so true… and so happy that your parents chose the way they want to leave this place on earth… there are many people who didn’t have a chance to.

  28. Death is imminent, life is fleeting. The resolute acceptance of death is courageous. Love, and live, and embrace life, and discard those things trivial for they will only serve to negate the richness of life…love, peace, balance, caring…Peace to those gone before, and those after….for love is the most important thing…

  29. I have never heard the term Death Panel before. Before my Mom passed away we had thoroughly discussed her wishes. She signed papers and left me in charge but in the end I still had to fight for her right to die as she chose to.

  30. Before my grandfather (and guardian of 14 years) passed away from cancer, him and my grandmother talked about their end of life decisions. It is just as important as talking about one wants done to their remains (if not more important). Everyone should have a right to die in peace, and not be forced into fighting to the point that they no longer themselves. My grandfather fought cancer for over 9 months despite being given only 3 weeks to live; he passed after entering a coma…at least it was peaceful at that point.

  31. I’m glad your parents had a choice, and knowing your parents wishes you were able to act in accordance with their wishes. That is the way it should be – individuals and their families making decisions amongst themselves and not a doctor meeting with a panel of bureaucrats to decide for them.

  32. Pingback: In Which Our Author Blogs Nervously « One Pretentious Bastard

  33. WOW! I’m sorry you all had to go through with this! I’m a strong believer in letting people have end of life choices.

    I wrote a book “Before(I Die) During (The Process) and After (You’re Gone)” It covers end of life choices, hospice advice, aging parents, care taking advice, funeral advice and more. I also have a live forum on my website for people to get/give advice and share stories with each other. Please take a look. Thank you for writing your article!

  34. Reblogged this on One Pretentious Bastard and commented:

    Yesterday’s supreme court hearing, upholding the constitutionality of the ACA makes this three year old post relevant. For the record, the steaming crock of shit know as Death Panels has been rated as a “Pants on Fire Lie” by Politifact

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