A Tale of Two Deaths

  1. 20

    While I don’t judge those who believe differently, I won’t try to hide my bias as I share the stories of two of my patients, each representing opposite extremes in decision making about the end of life in a health care setting where “everything” can be done.

    A Tale of Two Deaths

    There is a story in Japanese folklore that goes back into an era in which they practiced “Ubasute,” the abandonment of the elderly. When there were too many mouths to feed and not enough food to go around, impoverished farmers would take the oldest, most decrepit member of the family deep into the forest and abandon that person there to die alone.

    In one version of the story, a heavy-hearted son is carrying his mother deep into the woods. Through his tears, he notices that she is reaching up and breaking branches from the trees and dropping them onto the path behind them. He asks what she is doing, and the old woman replies, “Omae ga, kaeru toki no michi shirube da – They are markers to guide you when you return home.” Even as she is being carried to her death, she is not angry or thinking of her own dilemma. Her only concern is for her son’s well-being. Despite the pathetic context in which the story plays out, I’m profoundly impressed by this mother. She is sacrificed due to the lack of resources, but her final hours are marked with unselfish love.

    My own mother died suddenly of an aneurysm at the age of 57. I don’t remember her ever being sick a day in her life. She was a nurse for years before getting two Master’s degrees and becoming a nursing instructor. Between classes, she took a fellow instructor and some students out to her car to give them some boxes of apples. She collapsed while lifting a box from the trunk. Her best friend and her own students started CPR before EMS arrived. She regained consciousness briefly before coding again in the ER. Our family was aware of her general wishes, and we made the decision to stop life support soon after brain death was confirmed.

    Advance directives were relatively unknown in those days. Ironically, a few months before her death, Mother made a single entry in a journal, reminiscing about her life so far. The last paragraph closed with these words: “If I ever get into a situation where I would need to be dependent on machines, I do not want to be kept alive. Please be sure there is a ‘no code’ on my chart.” We found the journal a few days after she died and took some solace as her words confirmed that we’d made the right decision.

    The story of Ubasute and my mother’s death strongly influenced my thinking before I went into ER nursing where I see death on a regular basis. There are some who argue that it is also courageous to struggle, to fight for life until the last breath, even when we have been reduced to a persistent vegetative state. They readily avail themselves of the full force of our medical prowess. On the far end of the spectrum, others see life as more than sustained physical functions, more than a heartbeat and the ability to consume nutrition and produce excretion. They want, or need, a certain level of quality to continue. For them, letting go is courageous and possibly unselfish. While I don’t judge those who believe differently, I won’t try to hide my bias as I share the stories of two of my patients, each representing opposite extremes in decision making about the end of life in a health care setting where “everything” can be done:

    Glen. The crumpled little figure lying on his left side is a sad reminder of the frailty of our humanity. Glen has a long, complicated medical history with multiple system failures and corresponding medical interventions to prop him up for another round. His once healthy five-foot nine-inch frame is down to ninety-two pounds. A plugged J-tube protrudes from his abdomen, with some yellowish liquid soaking through the dressing. Duoderm covers a massive stage three sacral decubitus. A pastel plaid pair of bulky heel protectors hide chronic foot ulcers. His extremities are severely contracted. A Foley catheter drains a scant amount of thick, dark urine. He hasn’t spoken a word since a stroke six years ago. He responds to noxious stimuli, but he does not follow commands or assist with his care. He makes no eye contact. A long-term care facility sent him to the ER be evaluated for possible aspiration pneumonia.

    A woman who appears to be about sixty bustles into the room. She looks flustered and anxious. “Is he alright?”

    I’m a little taken back when Michelle looks the visitor in the eye and says, “No, ma’am. He’s not alright. Is there anything here you see that is alright?” Michelle is not unkind. She is simple and more honest than most caregivers would be in answering this question. She’s right of course, but many will judge her harshly for telling the truth.

    The visitor does not seem offended, but she doesn’t respond. Instead, she goes to Glen’s side and pushes his hair from his forehead, saying “I love you poppa.” He does not respond to her. She produces POA papers and states “they” want everything done. We initiate an aggressive sepsis workup, including a D-dimer which prompts a VQ-scan to rule out a PE because his renal function precludes the coveted CT thorax. Two hours later, sepsis and pneumonia are his primary admitting diagnosis as he goes to ICU with several infusions running.

    Despite continued aggressive care, Glen does not recover. A code blue is called six days later. The first few compressions break his ribs, and his detached sternum floats freely. Frothy blood running up into the ET tube suggests that broken bones have punctured a lung. After 20 minutes of ACLS, five rounds of epinephrine, and two defibrillations for a possible “fine v-fib,” the unsuccessful resuscitation effort ends.

    Esther. An eight-six-year-old female arrives from home in a wheelchair. She’s on 2 liters of oxygen via nasal cannula and clearly in respiratory distress. Esther’s daughter-in-law, Jennifer, is her primary caregiver. Her only son, Jake, has an hour drive ahead of him to get to the hospital. They produce a living will and a valid DNR. The patient clarifies that she is open to medications and oxygen therapy, but she does not want bi-pap, intubation or resuscitative measures, including emergency drugs like epinephrine. We tell her that without aggressive treatment, she may die very soon. She answers, “That’s why I went to the trouble of getting these papers. I’ve lived a good life. I’ve already had the bonus round. We’ve talked this over, and if this is my time, then it is my time.”

    She agrees to basic labs, a CXR, IV solumedrol, IV fluid, and increased oxygen, but refuses any kind of a mask because she wants to be able to talk clearly.

    Jennifer is the most courageous family member I’ve ever seen at the bedside of a dying patient. There is no way to improve on what she does. She silences her phone and puts it in her purse, giving Esther her undivided attention. When Esther gets too weak to talk, Jennifer keeps her engaged, reconstructing meaningful moments of her life for her, telling story after story. “You were so good with the kids granny. The will never forget all the days you were there for them in the early years. You gave them so many happy memories, like that blow-up pool you got Jason when he was six. Jessica still talks about the weekend you took her and her friend Emily over to St. Pete Beach for her 8th grade graduation. She came to me that night and said you are the coolest grandmother ever.”

    We are nearing the hour mark, and I can see that Esther may not be able to hold out for her son to get here. Jennifer tackles this obstacle too with incredible poise and grace. “It’s okay, granny. I know you are trying to hold on for Jake to get here, but you know he loves you. It’s okay if you need to go now. He’ll understand. We all love you, Esther.”

    Esther tries to smile as her head slumps forward, and Jennifer quickly steadies her back on the pillow. She quietly runs her fingers through Esther’s hair. There are only a few agonal respirations before the breathing stops altogether. I silence the alarms, feel for a carotid pulse, and confirm what Jennifer and I both already know. I shut off the oxygen and removed the nasal cannula. Esther’s face is peaceful. I hug Jennifer and tell her she is incredible.

    I’ve seen hundreds of deaths. Calm, anticipated and accepted deaths usually happen at home or in a hospice facility. Death in the Emergency Department is usually intense, arguably brutal, and sometimes frantic. Some deaths are shocking and tragic when a child or healthy adult dies unexpectedly. Most people, like Glen, die for really good reasons. I’ve seen so many like him, they are soon forgotten. I’ll never forget Esther, and her last hour filled with courageous love on both sides. If it is even permissible to put the two words together, Esther’s death is beautiful.

    I won’t judge those who chose differently, but I already have an advance directive. The people in my life know where I stand. When my time comes, I will be honored to follow my mother’s conviction and Esther’s noble example.
    Last edit by RobbiRN on Aug 16
    Do you like this Article? Click Like?

  2. Visit RobbiRN profile page

    About RobbiRN, RN Pro

    I am an ER RN, a writer, a dancer, a traveler and a lover of the beach. I am "just a nurse" by choice. Thank you in advance to all who read and respond.

    RobbiRN has '24' year(s) of experience and specializes in 'ER'. From 'Florida'; Joined Dec '16; Posts: 106; Likes: 516.

    Read My Articles

    9 Comments

  3. by   VivaLasViejas
    Very good article. We see these scenarios every day and everywhere, and it's always heart-rending. Since I'm firmly in the DNR camp myself, I thought Esther's story was the most compelling; thankfully my family knows and understands my wishes, and will not force me to stay here longer than is appropriate. I feel so sorry for those poor people who are made to suffer by the (usually) well-meaning families who insist they we do "everything" to save them...for what? More time to lie in bed with pressure ulcers, with feeding tubes, with bodies that are wracked with pain every waking moment? No thank you!
  4. by   Kitiger
    Having someone with Power of Attorney is good, but do write a letter, too. Write it in your own words. Write it out; don't just type it. Your POA needs to answer to your family, too. When they can see your handwriting and "hear" your voice, it will help to calm and comfort those who need it the most.

    I have written a letter that not only states what I would want done, but why. My husband & sister both have copies.

    Of course, talking to your people beforehand, as VivaLasViejas has done, is very important, too.
    Last edit by Kitiger on Aug 16 : Reason: added thought
  5. by   JadedCPN
    What a great, well written article. The opening Japanese folklore caught my attention and your stories kept it. I also am on the DNR side of things, but I understand it is a very personal choice.
  6. by   CeciBean
    I'm firmly on the DNR side. I have been through this scenario so many times, both as a nurse and as a daughter. I've seen some real horror shows as a nurse, and some very grace-filled deaths. When my then 90-year-old father got pneumonia, we were probably more aggressive than we ought to have been, even though he was DNI/DNR and not to be moved to ICU. He ended up in the nursing home after he went home following this illness, fell, and could not be got up by the caregiver. This was definitely not what he would have wanted, but it was the only way. His dementia made it impossible to keep him at home without skilled care. We specified that he was to be a DNR and we did not want him to be hospitalized should he become ill. He died quietly of CHF a couple of months later. While he was at the nursing home, he was able to have visits from my mom and their beloved dog. My mother was able to stay at home with a caregiver until the end several years later, and when she became ill with pneumonia, the doctor prescribed oral antibiotics (he even actually made a house call!) but once she couldn't swallow we stopped them. I live several hours away, but my daughter and her husband and one of her caregivers were with her when she passed. My daughter put on music from the time when Mom and Dad were courting and played it softly in the background and held her hand until she was gone. I'd prefer to go that way.
  7. by   RobbiRN
    Quote from CeciBean
    I'm firmly on the DNR side. I have been through this scenario so many times, both as a nurse and as a daughter. I've seen some real horror shows as a nurse, and some very grace-filled deaths. When my then 90-year-old father got pneumonia, we were probably more aggressive than we ought to have been, even though he was DNI/DNR and not to be moved to ICU. He ended up in the nursing home after he went home following this illness, fell, and could not be got up by the caregiver. This was definitely not what he would have wanted, but it was the only way. His dementia made it impossible to keep him at home without skilled care. We specified that he was to be a DNR and we did not want him to be hospitalized should he become ill. He died quietly of CHF a couple of months later. While he was at the nursing home, he was able to have visits from my mom and their beloved dog. My mother was able to stay at home with a caregiver until the end several years later, and when she became ill with pneumonia, the doctor prescribed oral antibiotics (he even actually made a house call!) but once she couldn't swallow we stopped them. I live several hours away, but my daughter and her husband and one of her caregivers were with her when she passed. My daughter put on music from the time when Mom and Dad were courting and played it softly in the background and held her hand until she was gone. I'd prefer to go that way.
    Thank you for sharing your family's story. I personally agree with your decision to withhold the antibiotics for your mother's pneumonia, although this is a place many choose not to draw a line. They argue that "DNR doesn't mean do not treat." Sending her to the ER for IV antibiotics may have gotten her past the current infection, but then what?

    As a society, the question we need to better define is: "What things are acceptable to die from?" Sepsis (newly designated medical enemy #1) from pneumonia or even a UTI can bring on a very rapid decline and may not be such a bad way to go. If we stave off a fairly quick death now, we may be ourselves up for a far more painful, pathetic and drawn out alternative.
  8. by   Kooky Korky
    Quote from RobbiRN
    Thank you for sharing your family's story. I personally agree with your decision to withhold the antibiotics for your mother's pneumonia, although this is a place many choose not to draw a line. They argue that "DNR doesn't mean do not treat." Sending her to the ER for IV antibiotics may have gotten her past the current infection, but then what?

    As a society, the question we need to better define is: "What things are acceptable to die from?" Sepsis (newly designated medical enemy #1) from pneumonia or even a UTI can bring on a very rapid decline and may not be such a bad way to go. If we stave off a fairly quick death now, we may be ourselves up for a far more painful, pathetic and drawn out alternative.
    A UTI can be terribly painful. Pneumonia probably is, too. Just something to keep in mind when withholding antibiotics.

    Best way to die is quietly in one's sleep. Hard, though, on whoever finds the deceased.
  9. by   RobbiRN
    Quote from Kooky Korky
    A UTI can be terribly painful. Pneumonia probably is, too. Just something to keep in mind when withholding antibiotics.

    Best way to die is quietly in one's sleep. Hard, though, on whoever finds the deceased.
    Sure, most of use would choose to go to sleep relatively okay and not wake up if we could make the choice. Most of the time, we are forced to make harder choices. Glen's tortured existence, which drags on for years, would not happen if we didn't fight off every infection that comes along.

    Younger and middle age patients complain of pain with UTIs and pneumonia. It seems the elderly who come in to the ER septic from UTIs or pneumonia rarely complain of pain -- if they are communicating at all. Interestingly, they often deny pain. Their complaints are usually weakness, confusion, lethargy, and no appetite. They are usually febrile, hypovolemic, and already in a rapid decline that has many of them poised on death's doorstep. How many other systems have to fail before it is okay to die from something other than cardio-pulmonary arrest?
  10. by   not.done.yet
    Everyone imagines going in their sleep. Statistics say only 1 in 8 actually do.
  11. by   Dragonnurse1
    When I worked the ER the time of night we hated the most was 5AM when the local nursing homes started their rounds. We had so many patients come from the nursing homes with no DNR's, no advance directives and family screaming do everything. Many of the admitting doctors for the nursing homes began to refuse to admit without full discussions and advance directives for patients going into long term care. But here family can and does often over-ride an advance directive and I have seen it too many times. The 90yo female nursing home patient, non verbal, only pain response whose family insisted we do it "all" and the feeling of those ribs breaking below my hands on the very first compression. But there was also the 80 yo who came in with her two grown children (my age) and they wanted their Mom to have an easy time. She was a patient of the residents and not one of the ones on call that night know how to even approach a DNR. The family asked me to help and I walked the residents through the paperwork while maintaining their mother in a comfortable place. Having to explain to the residents that yes the children knew full well what the morphine was going to do to their mother and yes it was not the residents call. They had the proxy in their hands. Walking the family through what was about to happen and staying with them for 2 hours after, thankfully it was a slow night. Then having to do the same thing for my father just 3 years ago, at home holding a note with his wishes written on it. I will have to go the extra mile and have a filed copy of my health care proxy with me at all times along with the DNR and advance directives as I have children that will try to override my wishes. My oldest son however knows, understands and agrees with me and will do what I ask. He knows it will be the last gift he can give me.

close