Following orders

If you are a fan of shoot-em-up movies, this is a familiar theme. A conflicted, macho warrior, say Nicolas Cage, in a steamy jungle, surrounded by faceless, merciless enemies, carries on a futile fight. Soon, all of his men lie dead. Then, through the rest of the film, this flawed man, in eternal pain, haunted by visions of friends and wasted lives, says, again and again, “But, I was just following orders.” Our hero finds peace only in the grave.

War is about orders. Men and women do things that no sane, moral or compassionate person would choose. Destroy, kill and sacrifice, for a greater cause. Treasure, land, family, truth, god, justice. A pure mission reduced to a set of unalterable, unquestionable, resolute instructions. Orders. Do and die.

I met Donald in the emergency room; whisked in, sirens blaring, by rescue squad. He was confused, gasping, fluid gurgling in his throat, a pressurized oxygen mask on his face, arms flailing as he tried to pull in air. His skin, pale, moist and cold, hung loose over wasted arms and legs. Don’s skin was covered with the giant, almost continuous bruises that doctors call purpura, a result of malnutrition, countless intravenous sticks, and chronic use of blood thinners to combat recurrent clots. He had been a very sick man, for a long time.

Don was a patient of an oncologist at another hospital, where he was treated for lung cancer. He had undergone several surgeries, chest radiation, brain cyberknife and months of chemotherapy. The aggressive therapies did not stop or slow the lethal disease. It was obvious that Don was dying and he was dying now.

Away from Don’s agony, I sat down with his wife, Rose, their son, and daughter at her side. I gently, slowly, explained his terminal condition. This was how lung cancer patients die. His lungs were filling with mucous, infection and blood, caused by progressing cancer. Soon, he would stop breathing. Don could not be saved; he would not leave the hospital. It was critical that we give Don peace. Sedation and morphine. The dignity of a gentle end.

Rose listened carefully. She sat quietly sobbing, hands shaking, tears running down her cheeks. Her daughter put an arm around Rose’s shoulders, I held her hand in mine. She thought for a few moments. Then, looking down at the floor, Rose said, “Put him on a machine. Pound on his chest, if you must.”

I was shocked. This was as clear of an end-of-life, keep the patient comfortable moment, as one ever sees in cancer medicine. It took me a moment to recover. Stubbornly, I repeated my diagnosis and prognosis. Machine or no machine, CPR or not, Don would absolutely die during this hospitalization.

Rose listened. She nodded. Then, her hands rising to cover her eyes, Rose said. “Put him on a machine. Don said, he made me promise, that whatever happened, no matter what, he wanted everything done.” Don had given orders.

For Don, his war on cancer came down to futile hope, expressed as a cruel command. He had ordered Rose, his family, to fight an impossible battle. Push beyond merciful reality. They would suffer and so would he.

For eleven days, in the intensive care unit, Don lay connected to a respirator machine. He never became focused or alert. He thrashed and pulled at IVs and yanked at the tube down his throat. After the first day or so, we gave up trying to keep him awake. We paralyzed Don and knocked him out with intravenous drugs. Don was unconscious for the rest of his life.

For the first couple of days his family maintained a vigil. However, it was painful to listen to the gasps of the machine, watch the fluids drip in and run out, see him, occasionally, wince. Then, they came only during the day. In his last hours, they did not visit at all.

Rose called Don’s nurse daily, at 7:00am and 4:00pm, for the report. I called his family each morning, reassuring them that in a medical coma, Don was not in pain. I presume they went woodenly about their lives, somewhere else. The nurses tended the machine, the labs tracked the failure of his body, and the monitor’s beep announced the weakening of a dying heart.

When he arrested at 2:14am, we called a code. The team pressed on his chest, broke a few ribs, stuck in long needles, poured in fluids, and injected medications.   Shocked him twice… three times. They called it at 2:38am. Don was dead. He was left, for a while, alone in the technological silence of a night ICU. When his family said they were not coming in, a gurney took the cooling body to the morgue.

No one wants to die. Nonetheless, to be human is to be mortal. We forget, sometimes, that the struggle is not against death, a foe we can never defeat, but for life. It is one thing to whisper, “Do everything you can to help me live, while I can,” and another to command, “Do everything, even if it destroys me and you.”


  • Paula Kaplan-Reiss
    That was a horrible story, but important. What's worse is that you had to follow HER orders.
    • I'm a firm believer if you make the bed, you need to stay there round the clock and make sure it stays that way. {{ahem}}
    • scarlet
      No they were HiS orders
  • meyati
    Cancer destroys some of the family. I personally think that it affects every family member. When I had my last wishes, living will, I put that I didn't want to be revived, I didn't want machines to be breathing for me, etc. I want to be remembered for some dignity. I don't want to make it worse for my family. I'm not depressed nor suicidal, but I know that death is inevitable, and is part of living.
  • ASG
    james, you're an incredible storyteller. thank you. i had a similar experience with my father in january of last year. he had stage 4 prostate cancer which had metastasized to his lungs and other organs...thankfully, he did not believe in fighting when the outcome no longer in doubt. he passed in relative dignity at our home, under the hospice care of sutter health. i held his hand as he passed. i miss my father, but am glad he's finally at peace.
  • Toni
    How very, profoundly sad....
  • D Someya Reed
    Does anyone else not see how this story judges and shames Don’s wife Rose and his family. It’s basis is an outsider’s interpretation of the family’s actions when that outsider was not privy to any family conversations upon which they were based? Does anyone else not see how this story supports the medical industry’s ignoring of the final wishes of the dying? Isn’t it entirely possible that Don “begged,” rather than “commanded,” his wife to honor his wishes that everything be done for him? Did anyone at the hospital see Don threaten, abuse or extort Rose into agreement? In what way is it better (and for whom) to “kindly coerce” (and sometimes not so kindly) a patient’s spouse (or advocate) into ignoring these dying wishes to which they may have agreed to long before and after many heartfelt conversations? Is this not taking advantage of the family at their weakest moment? Stranger still, is that the medical practitioners would have done all of these things, anyway…full code…had no family member(s) been available to “coerce.” Anyone who’s entered the hospital lacking an advance directive (or such) regarding wishes for resuscitation knows “the speech” you will likely get. And, it’s made intentionally graphic to secure compliance with “their” wishes, not yours. Incidentally, I was “thanked” by both the hospital physician and the hospice nurse in attendance for my “understanding” when I told them that they needn’t try to “scare” me into agreement with their graphic details as I knew the actual reason was not the relief of patient suffering but rather who would be responsible for paying for my wife’s care under full resuscitation. Yes, you read that correctly, they thanked me! They offered no contradiction to my statement. How is it better to saddle that spouse and family for the rest of their lives with the psychological (and much harder to get over) trauma of having lied to their loved one by dishonoring his wishes? How dare Rose and family be shamed for their lack of attendance at Don’s bedside? Maybe Don told Rose that he knew what he was asking for would be unbearable for Rose to watch so he begged her to honor his wishes but forgave her if she couldn’t bear to be witness to it. With all the talk about caring medical professionals (and how much the deaths and/or suffering of each and every patient bothers them), where was Don’s oncologist during all of this? Sure he was from another hospital (with regards to daily care) but how many bedside companion shifts did he do on his days off? Is Rose or any family member a “bad person” just because they didn’t or couldn’t be at Don’s bedside? No, of course not and no one but Rose and family know their reasons for not doing so. Am I a “better person” than Rose because I chose to stay at my wife’s bedside from the moment of her arrival to the moment she was removed by the funeral service? No, of course not. It was my choice and no one else’s. If doctors are going to try (maybe their administrators “command” them) to talk you out of any extra and/or costly services to prolong your life (or suffering, as they say), why don’t these same doctors just get together and change the rules that would then allow them a form of ethical conscientious objection. They can determine under what physical circumstances a patient’s condition is no longer viable and simply tell the family when they ask for full code, “We don’t do that anymore.” The medical industry has already determined many things which cause patient suffering but are considered to be “ethical” if the doctor’s intent is beneficent. But no one knows who (at the time of occurrence) gets to determine the doctor’s state of mind and intent. This would simply be one more of those beneficent circumstances. And, this would be much like insurance companies and the government who already say “We don’t pay for that…it’s not standard of care.” At least, we’d all know where we stand. There would no longer be a need for advance directives. We often hear how they are not followed anyway due to lack of knowledge that one exists, patients (or family members with medical power of attorney) are often talked out of pursuing their chosen measures, and they just don’t seem to be worth the paper they are written on. Doctors would no longer need to write industry papers on those occasional patients who recover under these worst of conditions. This type of recovery would never happen and the likelihood that they (the doctors) had anything to do with that recovery anyway is minuscule at best as well as never truly understood (why). These papers only serve to make the public believe that one day they might be that 1-in-a-million or 1-in-a-billion patient who recovers. How is sedating a patient and putting them in a medical coma not just a tiny step away from euthanasia? If the hospice industry is correct, doctors (they claim) largely under-treat pain and patient suffering occurs but can’t be verbalized. No one truly knows that someone else is not in pain even when sedated. Sure, we can eliminate the firing of all the nerve endings that we know about but our “human machine” is very adaptive and the patient simply can’t tell you what they may or may not be feeling. Physical signs are not absolute. No doctor ever says, “As far as we know, Don is not suffering.” It’s not a demonstrable fact, it’s really just a white lie meant to ease the minds of the family and loved ones. Simple case in point, when I had my wisdom teeth removed I was knocked out…totally unconscious...with small, measured doses of Brevital Sodium…one every four minutes. The dentist told me later that he was standing on the chair over top of me while pounding on my teeth. Did my body not feel the pain or was I simply inhibited from reacting either physically or verbally? Afterwards, I certainly felt the pain but I had no memory of anything while I was “out.” So my question to you is…If I can’t remember the pain, did I not have it? Kind of like the tree falling in woods. Don’t get me wrong. There are plenty of doctors doing great things. This kind of thing is not one of them. If you are going to encourage us to complete advance directives then either not follow them or talk our families out of enforcing them at their weakest moment; if you are going encourage us to complete advance directives then berate our choices and belittle our families in stories (with names changed to protect the innocent); if you are going to discourage us from pursuing euthanasia even when you agree there is no hope for us…of course, we doctors can do it, but you can’t…then don’t waste our collective time (yours and ours). Our bodies are the only things that are truly ours. We are born into them and we will die out of them. Even still, this means they are merely a loaner for the time we inhabit them. No one, degreed or otherwise, has the right to tell us what to ultimately do with these bodies. If you think about it, patients who ask for full code are truly offering themselves willingly for doctors to “practice” their craft upon (within the law, of course, and not experimentation…that being illegal/unethical). Why do we have machines to be “put on” if we are never going to use them because you’re too far gone anyway? Some doctors claim that cost savings are the issue and that money can be better spent. Is it? I attended the fairly recent 50th anniversary “celebration” of the Medicare benefit. I, of course, asked the doctor (responding to questions) about the lack of Medicare patient protections in hospice still after all this time. He (claiming to be a pioneer in the hospice industry and introduced as a well respected, talented physician who voluntarily teaches about medicine to the public) said I had a great question and proceeded not to answer it. Instead, he said that he has always felt that we should pay people to agree not to ever pursue certain curative and/or expensive treatments (such as hip/joint replacements) in exchange for (his example) a 50% increase in your social security benefit. True story. He added, “Just think of what we could spend that money on.” I was thinking it would be “nothing” considering that if this idea took off the client patient base would be decimated. As this idea likely would target the poor, doctors would only be treating the wealthy who knew in advance that they didn’t need the boost in social security payments. ‘Brave New World’ and virtually every other concept of a dystopian future have nothing on this idea. But back to Don…If I were him, I would be horrified and furious that my family was treated this way during my death and is now being shown in this (negative) light after my death by anyone who has no idea of our reasons why we chose this path. This was not a good story on so many levels. It may be an important one but not for the intent of which it appears to have been written.
    • meyati
      Are we reading the same article?
      • D Someya Reed
        Yes we does anyone know that Don didn't beg Rose to let him die as he lived...a fighter? Why is it said that he "commanded" Rose to obey him when no one knows for sure what he said except Don and Rose? I see no quote from either he or Rose that he "ordered" her to obey anything. Even Elisabeth Kubler Ross said in her writings that we die as we live. If we've fought all our lives we will fight at the end. She did not force people to give up their fight if that's what they wanted. Don wanted his one-in-million chance to prevail. Who is to say that he can't have it even if everyone else believes that he won't?
        • meyati
          You are assuming a lot that isn't in evidence. You must be having a bad day, lots of stress. Some times that causes people to subconsciously to bring their past experiences into the present. Those past experiences causes us to interpret the present. In writing, the reader or audience is part of the writing, and it is acknowledged in creative writing, actually all forms of writing and communication.. You have your response-fine. It's possible that you could pick this up and read it months later, and you wouldn't feel this way about Dr. Salwitz's actions. I see this as a cautionary tale that the doctor is sharing from his experience. There are many people that grasp to life, and put everything into that, as this man did. I've run into doctors and staff that expected this from me, they were greatly disappointed. Don was the one that commanded, and we see the results. The doctor is suggesting that we think about what we, as patients command. What mental state the doctor is in, has nothing to do with a patient's last wishes. I'm going to stop now, because this might upset you, and I don't care for a tirade. I won't respond to any further postings on this subject by you. You are free to interpret this cautionary experience any way you want. I just think that your past experiences cause you to be reading something other than what the rest of us are reading. I hope that you feel better in the future.
    • Scarlet
      You missed the point. He did I not blame anyone for anything. The article is about end of life, following a loved ones wishes even if it means suffering for all. It was clear she was following his wishes. This article show simply how death tears everyone apart including the patient when you fight and fight and fight to no avail. Read it again and without already always knowing.
  • D Someya Reed
    Meyati…I appreciate your point of view (though I, respectfully, disagree with your perception of my state of mind) and respect your choice to no longer respond. I would appreciate it, though, if you (and anyone else) would just read the following (not asking for a response) as I feel this is a very important issue and this may better explain my position. This story was designed to both shock and pull at our heartstrings but its message is clear. That is, when our treating physicians say that they believe there is no longer hope of our survival and that they have determined that we are in unnecessary pain, whether we agree or not, whether they are correct or not, each of us should forego all care except palliative, comfort measures for the emotional well being of those who will survive us. The choice of wording (such as “orders” and “agony”) along with the graphic, descriptive details, fully and intentionally, supports this message. For the dying individual, as written here, the basis for this is that to do otherwise would be selfish and uncaring of the impact of our suffering upon our survivors. For the survivors, as written here, the basis for this is to honor such wishes for further NON-palliative care is selfish and uncaring of the suffering of those who are dying. It intentionally avoids the practical, non-emotional considerations such as cost, futility and freedom of resources for use by others. Practicalities are not included as these do not support the emotional response being solicited here and are already contentious in nature. And, Dr. Salwitz has written (appropriately) on both the emotional and practical sides of death and dying elsewhere. But this story is only told from the side of the physician who JUST MET the patient (therefore lacked any history or relationship upon which to have judged the reasons for the patient's choices). Within the FIRST DAY (I, personally, do not believe that there was an “or so” in this case) he claims to have “…paralyzed Don and knocked him out with intravenous drugs.” A condition in which he remained for the next 10 days. Ask yourself, how do the hospital’s actions compare with Don’s wishes as stated by Rose? How do the hospital’s actions compare with what the physician asked Rose to do instead? I’m not saying they should have let Don lay in extreme suffering but weren’t these actions exactly what the physician proposed to Rose and she refused according to the story? Wouldn’t sedation to unconsciousness and drug-induced paralysis pretty much ensure death whether on a machine or not? I’m intentionally not going to go into legality here under ethical considerations and the Doctrine of Double Effect nor am I accusing anyone of illegal activities. However, if the medical industry wants to exert control over our end-of-life decision making (no matter whether it be for humanitarian or practical reasons) then the medical industry should muster the courage to come forward and legislatively, fully remove any choice or right (to that choice) each of us may have to decide what care we want and/or how our bodies will be treated. If that does not pass then support legislation to authorize the ability of hospitals and physicians to refuse care to the dying under some predetermined, publicly available set of circumstances. Then stories of this nature would be unnecessary. It is dishonorable to us, both patients and families, to tell us we have these rights, to ask us to make our decisions EARLY so that they WILL be honored then to judge us without all the facts (BOTH sides of the story…including OUR reasons for our choices), to shame us for our decisions and our (perceived) inability to bear witness to the outcome of those decisions, to publicly “call us out” (such as this story does, overall, on our choices), to attempt to convince us (be it patient or family) to reverse our prior-made decisions when we are at our weakest moments and to either surreptitiously or overtly override our choices. Do you truly believe that “Rose” would not recognize that she and “Don” are the subject of this story? How does this story improve Rose’s emotional suffering and help her to “heal” as the story implies the “right” decision would have done? How does this story help ANY person suffering now from having made (the implied) “wrong” decision? Even if you and your treating physician are in agreement that your death is imminent, do you really want to be removed from any decision-making on what is done to you next? Do you want to be (emotionally or practically/monetarily) “guilt-tripped” into changing your previous decision if your physician doesn’t like it? I’ve always understood that a right is a right simply because it cannot be taken away. Is this true or are our wishes honored only if the hospital and physician agree with them? Do we check our rights at the door when we check-in even though we’re given a hospital Bill of Rights? Even if we have these rights, are they applied equally from the poorest of the poor, to the richest billionaire or celebrity and everyone in-between? If that were true, though it’s not, at least it would be fair for everyone. Thanks for reading.

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