“I AM A PAINFUL TRUTH”

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Posted on 24th February 2014 by T4C in Economy |Politics |Social Issues |Technology

 death

     A year and a half prior to retiring from ICU nursing, I was working on creating an A – Z information binder for patient’s families; with the expressed goal of dispelling the mystery and the fears they inevitably had about the ICU. Included in it were drop-dead gorgeous pictures to assist in promoting a calming affect.  Trust me on this: studies too numerous to count support this vital element. There were going to be 3 binders in the Waiting Room, and one in every patient’s room.

In the Table of Contents this was the chapter pertinent to this thread:

8.  Understanding Life Support
Understanding What Documents Address Life Support Decisions
Advanced Directives
Living Will
Medical Power-of-Attorney
Understanding Information Needed For an Informed Decision
Understanding Choices for Withholding Life Support
Understanding Life Support Measures
Understanding Emergency Life Support Components
Finding Comfort in Your Decision
What to Expect if a Patient Codes
What to Expect if a Patient Passes in the ICU
Exceptional Circumstances
Medical Examiner Case
LifeNet and Organ Donation
Transferring to Another Hospital
“The Dying of the Light” by Craig Bowron, MD

The following is my introductory to the article cited in the Table of Contents:

________________________________________________________________________

The following article was in the Outlook section of the Washington Post on January 11, 2009.  It has been included in this section “Understanding Life Support” because it is so relevant to this topic.

 

The Dying of the Light
The Drawn-Out Indignities of The American Way of Death
By Craig Bowron, MD 
Sunday, January 11, 2009

It’s January, and with the holidays behind us, here in Minnesota the deep psychosis of winter settles in. The cold has a sharper edge; the darkness of night seems more penetrating and brittle. We’ll take the ornaments off the tree but leave the lights on and keep watering it until it gives up its photosynthetic ghost. The green must be cherished until life returns in earnest in the spring.

I’m a physician in a large hospital in Minneapolis, where I help care for patients struggling through the winter of their lives.  We’ve got a lively spring unit, an obstetrical ward where fresh-faced tulips are popping up at all hours, but that’s not my specialty.  As a hospitalist, I see adult patients of all ages and complexities, most of whom make good recoveries and return to life as they knew it.  But taking care of the thread-worn elderly, those facing an eternal winter with no green in sight, is definitely the most difficult thing I do.

That’s because never before in history has it been so hard to fulfill our final earthly task: dying. It used to be that people were “visited” by death.  With nothing to fight it, we simply accepted it and grieved.  Today, thanks to myriad medications and interventions that have been created to improve our health and prolong our lives, dying has become a difficult and often excruciatingly slow process.

Take one of my patients.  She started dialysis six months ago at the tender age of 85, and the diabetic vascular problems that put her kidneys in the tank persist.  One leg has been amputated above the knee, and several toes on her remaining foot have succumbed to gangrene.  Robbed of blood, they appear dry, black and tenuously connected, like an ash dangling off a cigarette.

This patient was brought in for a decreased level of consciousness and low blood pressure, but she has been having periods of nausea, and her appetite seems to have died with her kidneys.  The initial workup revealed little, perhaps a low-grade bladder infection, but treating it and her low blood pressure doesn’t seem to make much of a difference.  She is withdrawn; food goes into her mouth, but she won’t chew and swallow unless her children instruct her to.  She intermittently refuses pills. There’s a language barrier, but her children are there to interpret for her.  Translation: She feels exhausted and weak, and she feels that way most of the time.

This woman is suffering from what we call “the dwindles,” characterized by advancing age and illness.  Although dialysis is a miraculous technology — she’d be dead without it — it exacts a heavy toll from someone her age or with her medical problems.  Three days a week are spent in dialysis, and the other four are spent recovering. It is extending her life, but she’s miserable.

Her family has designated her “full code,” meaning that if her heart stopped or she were to cease breathing, we would do CPR to revive her, even though there would be a very slim chance of success — and even though it would be God’s or the universe’s way of giving her an easy way out.

Another patient is in even worse shape.  He’s 91 and still a very big man. When I enter his room to examine him, he seems like a giant oak felled into a hospital bed, stiff and rigid, with swollen arthritic joints.  A stroke four months earlier paralyzed his right side and left him bed-bound and nearly helpless, with pressure sores on his heels.  He is mildly demented, and the pain pills aren’t helping. He was brought to the ER because he was thought to be having another stroke, though these new symptoms quickly resolved.

Talking with this patient, I recognize his face and the Cajun accent; I’m certain that I took care of him sometime in the past, but he is not the man he was then.  Staring at his 230 pounds stretching the length of the bed,  I wonder how difficult it must be to care for him.  To transfer him to a toilet or a chair requires the use of a Hoyer lift, a gigantic sling that’s wrapped around the patient and attached to a mobile mini-crane.  Fully suspended, he looks like a massive baby being delivered by a giant stork.  The contortions and gymnastics of getting him slung up and moved must drive him wild with arthritic pain.

Though I reviewed the patient’s chart before going into his room, I can’t recall seeing what nursing facility he had come from.  So I ask the nurse. She tells me, unbelievably, that he has come from his home, where his son cares for him.  Later in the day I place a call to this Clark Kent, this Superman in disguise.

The son answers with soft echoes of his father’s Louisiana brogue, and I ask him how in the world he manages to take care of his dad.  He replies that for one, it’s all he does, a full-time job, and moreover, his experiences in Vietnam numbed him to some of the intimacies of caring for another human being.  “Once you’ve shoved some guy’s guts back into his stomach, you know, you can get used to the rest of it,” he says.
He tells me that his father is wearing out and that it’s hard to watch.  The arthritis has become quite painful, and sometimes his dad just weeps.  Some nights he needs a couple of Vicodin to be able to sleep through the pain.  The old man is also spending a lot more time thinking about his wife, who passed away before him.  His son thinks he may be ready to die.

Nothing in my medical training qualifies me to judge what kind of life is satisfying or worth living. Many would say that if we were to become paralyzed in an accident, just let us die.  But many quadriplegics, once they’ve gone through an initial period of adjustment, find their lives very satisfying.  Patients can and do make enormous efforts and fight precipitous odds to get back to life as they knew it, or even just to go on living.  But the difference for many elderly is that what’s waiting for them at the end of this illness is just another illness, and another struggle.

Another patient of mine has 86 years behind her and was brought to our hospital from a nursing home in the wee hours of the morning.  Her diabetes has become very brittle and difficult to control;
the day before, paramedics were called because her blood sugar had dipped so low that she was becoming unresponsive.  She also has dementia, and a couple of months ago, she fell and broke a hip.  Although it was repaired and she completed rehabilitation, she has wound up essentially bedridden.  Strictly speaking, losing your mind won’t kill you: It’s the falling, the choking, the weakness, the bed sores.

This patient was brought in because the nursing home staff thought that she might have aspirated some food or secretions and developed pneumonia.  She thinks it’s 1982 and is, as we say, “pleasantly confused.”  She denies any and all symptoms, and her breathing looks comfortable.  A review of her chart shows no fever and a normal white blood cell count. Her chest X-ray shows perhaps a subtle pneumonia but also a compression fracture of one of her vertebrae, which has gone from being 50 percent to 90 percent collapsed.  Her dementia has mercifully spared her a lot of pain from the fracture, but it also keeps her from recognizing members of her extended family. Sometimes she doesn’t recognize her own son, who drove to the hospital to be with her at this early hour.

He and I discuss what brought her in, and then we talk about her code status, which he confirms is Do Not Resuscitate.  “She wasn’t supposed to be brought to the hospital in the first place,” the son tells me, and puzzled, I ask him to say that again.  She was never supposed to be hospitalized: Whatever troubles arrived, the plan was to deal with them in the nursing home.  His mother had made that decision herself, several years prior to this hospitalization, before the dementia really set in.

Later that day, I meet with the son and a few other close family members.  They want to continue the medications that would bring their mother comfort and discontinue all the rest.  They aren’t looking to end her life, but they aren’t looking to prolong it, either.  They can see that she is moving away from them in both body and mind, and they are ready to let her go.

To be clear: Everyone dies.  There are no life-saving medications, only life-prolonging ones.  To say that anyone chooses to die is, in most situations, a misstatement of the facts.  But medical advances have created at least the facade of choice. It appears as if death has made a counter-offer and that the responsibility is now ours.

In today’s world, an elderly person or their family must “choose,” for example, between dialysis and death, or a feeding tube and death.  Those can be very simple choices when you’re 40 and critically ill; they can be agonizing when you’re 80 and the bad days outnumber the good days two to one.

It’s not hard to identify one of these difficult cases in the hospital.  Among the patient-care team — nurses, physicians, nursing assistants, physical and occupational therapists, etc. — there is often a palpable sense of “What in the world are we doing to this patient?”  That’s “to” and not “for.”  We all stagger under the weight of feeling complicit in a patient’s torture, but often it’s the nurses who bear most of that burden, physically and emotionally.  As a nurse on a dialysis floor told me, “They’ll tell us things that they won’t tell the family or their physician. They’ll say, ‘I don’t want to have any moredialysis.  I’m tired of it,”  but they won’t admit that to anyone else.

This sense of complicity is what makes taking care of these kinds of patients the toughest thing I do. A fellow physician told me, “I feel like I am participating in something immoral.” Another asked, “Whatever happened to that ‘do no harm’ business?”

If we can be honest and admit that we have no choice about dying, then the only thing we do have a say in are the circumstances.  Like many nursing home patients, Dorothy was on the cholesterol-lowering medication Lipitor.  Why? So that she wouldn’t die of a heart attack or a stroke. But don’t we all die of something?

Everyone wants to grow old and die in his or her sleep, but the truth is that most of us will die in pieces.  Most will be nibbled to death by piranhas, and the piranhas of senescence are wearing some very dull dentures.  It can be a torturously slow process, with an undeniable end, and our instinct shouldn’t be to prolong it. If you were to walk by a Tilt-A-Whirl loaded with elderly riders and notice that all of them were dizzy to the point of vomiting, wouldn’t your instinct be to turn the ride off?  Or at the very least slow it down?  Mercy calls for it.

This isn’t about euthanasia. It’s not about spiraling health care costs. It’s about the gift of life — and death.  It is about living life and death with dignity, and letting go.

In the past, the facade of immortality was claimed by Egyptian kings, egomaniacal monarchs and run-of-the mill psychopaths.  But democracy and modern medical advances have made the illusion accessible to everyone.  We have to rid ourselves of this distinctly Western notion before our nation’s obesity epidemic and the surge of aging baby boomers combine to form a tsunami of infirmity that may well topple our hospital system and wash it out to sea.

At some point in life, the only thing worse than dying is being kept alive.

Craig Bowron is a hospital-based internist and a writer in St. Paul, Minn.

13 Comments
  1. AWD says:

    “the only thing worse than dying is being kept alive”

    For some reason; religion? ethics? morals? When you find you have a fatal disease, you are supposed to use every armament in the medical arsenal to fight it, suffering and cost be damned. Going through radiation and chemo just for a few extra months. I don’t begrudge people for their fight, heavens no, but what about the people that don’t want to suffer month after month, trying to hold onto life? The merciful thing to do would be to let people out of their suffering, painlessly and with dignity. But that’s not possible.

    If it’s not possible to die with dignity, then you must suffer, and being alive is worse than death.

    When I was a resident, I was at Pontiac Osteopathic Hospital in Detroit (in the ER). It’s the hospital where Dr. Kevorkian used to dump his bodies after he euthanized them. I was working one night, and he called in, wanting to talk to the attending. He said he was 15 minutes out. So, I slinked outside and waited. He came up in an old Buick. Stopped at the door, ran around the car, opened the passenger side door, and pushed the body out. It hit the sidewalk with a thud I’ll never forget as long as I live. She was dead, but just got shoved out of the car, and then Kevorkian took off like a bat out of hell. I think he was at risk of being arrested every time he was in contact with a dead body, and leaving them at the hospital was no exception. It was disgusting. Truly made me wonder.

    If people have a terminal illness, and they don’t want to fight it, what’s the harm in letting them leave in a painless manner? Even having people in the ICU, in a coma, are asphyxiated when the vent is turned off. Of course, at the mention of this, people start screaming, but not the people that have terminal diseases. Many are turning to suicide, and that leaves more pain. Other cultures give the old, dying and sick a grand send-off, on an ice flow or whatever. But, not us. We have to put people through ringer. The law states you can’t do it. Not that I would be doing it for my patients. Just something to think about. There has to be more dignity at the end of life, and less heroics. And they should pass a law, once you reach a certain age, you should have an advanced directive that is public knowledge (not that I’m in favor of another law). I’m just saying there should be more options for end of life treatment than what we now offer the dying.

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    24th February 2014 at 8:52 pm

  2. Zarathustra says:

    How Doctors Die

    By KEN MURRAY MD

    February 25, 2012

    Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. It was diagnosed as pancreatic cancer by one of the best surgeons in the country, who had developed a procedure that could triple a patient’s five-year-survival odds—from 5% to 15%—albeit with a poor quality of life.

    What’s unusual about doctors is not how much treatment they get compared with most Americans, but how little. Arthur Giron

    Charlie, 68 years old, was uninterested. He went home the next day, closed his practice and never set foot in a hospital again. He focused on spending time with his family. Several months later, he died at home. He got no chemotherapy, radiation or surgical treatment. Medicare didn’t spend much on him.

    It’s not something that we like to talk about, but doctors die, too. What’s unusual about them is not how much treatment they get compared with most Americans, but how little. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care that they could want. But they tend to go serenely and gently.

    Doctors don’t want to die any more than anyone else does. But they usually have talked about the limits of modern medicine with their families. They want to make sure that, when the time comes, no heroic measures are taken. During their last moments, they know, for instance, that they don’t want someone breaking their ribs by performing cardiopulmonary resuscitation (which is what happens when CPR is done right).

    Click Here to View More Health and Wellness Content
    In a 2003 article, Joseph J. Gallo and others looked at what physicians want when it comes to end-of-life decisions. In a survey of 765 doctors, they found that 64% had created an advanced directive—specifying what steps should and should not be taken to save their lives should they become incapacitated. That compares to only about 20% for the general public. (As one might expect, older doctors are more likely than younger doctors to have made “arrangements,” as shown in a study by Paula Lester and others.)

    Why such a large gap between the decisions of doctors and patients? The case of CPR is instructive. A study by Susan Diem and others of how CPR is portrayed on TV found that it was successful in 75% of the cases and that 67% of the TV patients went home. In reality, a 2010 study of more than 95,000 cases of CPR found that only 8% of patients survived for more than one month. Of these, only about 3% could lead a mostly normal life.

    Unlike previous eras, when doctors simply did what they thought was best, our system is now based on what patients choose. Physicians really try to honor their patients’ wishes, but when patients ask “What would you do?,” we often avoid answering. We don’t want to impose our views on the vulnerable.

    The result is that more people receive futile “lifesaving” care, and fewer people die at home than did, say, 60 years ago. Nursing professor Karen Kehl, in an article called “Moving Toward Peace: An Analysis of the Concept of a Good Death,” ranked the attributes of a graceful death, among them: being comfortable and in control, having a sense of closure, making the most of relationships and having family involved in care. Hospitals today provide few of these qualities.

    Written directives can give patients far more control over how their lives end. But while most of us accept that taxes are inescapable, death is a much harder pill to swallow, which keeps the vast majority of Americans from making proper arrangements.

    It doesn’t have to be that way. Several years ago, at age 60, my older cousin Torch (born at home by the light of a flashlight, or torch) had a seizure. It turned out to be the result of lung cancer that had gone to his brain. We learned that with aggressive treatment, including three to five hospital visits a week for chemotherapy, he would live perhaps four months.

    Torch was no doctor, but he knew that he wanted a life of quality, not just quantity. Ultimately, he decided against any treatment and simply took pills for brain swelling. He moved in with me.

    We spent the next eight months having fun together like we hadn’t had in decades. We went to Disneyland, his first time, and we hung out at home. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He had no serious pain, and he remained high-spirited.

    One day, he didn’t wake up. He spent the next three days in a coma-like sleep and then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.

    As for me, my doctor has my choices on record. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like so many of my fellow doctors.

    —Dr. Murray is retired clinical assistant professor of family medicine at the University of Southern California. Adapted from an article originally published on Zocalo Public Square

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    24th February 2014 at 9:02 pm

  3. IndenturedServant says:

    T4C, thanks for posting this. Am I to assume this project was never realized? It seems like a very worthwhile project that should be implemented nation wide.

    I’d never read The Dying of the Light before. It is a great piece of writing. It dances around the topic a bit too gingerly for my tastes but I suppose that is the point. A bigger problem I see is that the dumbed down populace is not bright enough to understand some of the words and innuendo used n it. You almost need a See Spot Run version.

    Out of curiosity, what do you do now or are you completely retired?
    I_S

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    24th February 2014 at 9:10 pm

  4. AWD says:

    “Unlike previous eras, when doctors simply did what they thought was best, our system is now based on what patients choose.”

    Or, more importantly, what the patient’s family chooses (or their lawyer). Nice article Z. Doctors refuse treatment for terminal illnesses because they know the literal hell on earth they’ll be put through, and doctors aren’t stupid.

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    24th February 2014 at 9:12 pm

  5. KaD says:

    THIS is where the majority of health care dollars are spent; on the decrepit elderly in their last months of life. Most of them don’t want to be in a nursing home. There is a time to let nature take its course. My Mother and I both have DNR orders and durable power of attorney for healthcare to specifically spell this out in case one of us cannot speak for ourselves.

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    24th February 2014 at 9:35 pm

  6. Stucky says:

    Great post, articles, and comments.

    I loved this — ” It’s about the gift of life — and death.” Death really IS a gift.

    I hope I die peacefully in my sleep of natural causes. But if they find some incurable cancer, or whatever, I’m swallowing pills or sitting in the garage with the car running. That’s a fact.

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    24th February 2014 at 10:01 pm

  7. T4C says:

    I_S

    “Am I to assume this project was never realized?”

    I worked a year and a half on this project….it was my baby. I worked with an excellent professional printing company. The project had my manager’s blessings, and when I finally had a demo copy finished she had a meeting with the administrative drones. It of course would additionally have to pass muster with the marketing department. She said they drooled over it and they gave it the green light. So off to the marketing department with the contents of the binder burned to a CD. Cutting to the chase, I was given a CD of their version of the binder. My binder was elegant, one-of-a-kind. They essentially raped my creation by putting it in an institutionalized format. I withdrew the project.

    “A bigger problem I see is that the dumbed down populace is not bright enough to understand some of the words and innuendo used n it.”

    Under the “Understanding Emergency Life-Support Components” I focused on simplifying the language as was reasonable because while Fredericksburg is a college town (Mary Washington University), it is surrounded by farms, and has more than it’s share of ‘Simple Folk’. Another crucial component was telling the truth. For example:

    Compressions

    Compressions require deep forceful pressing on the chest (sternum) with one hand on top of the other. This is needed to mimic the heart’s function of circulation.

    Note: Compressions have the risk of fracturing ribs. The risks (e.g. punctured lung, bleeding) is particularly high when performed on the elderly, or a patient with a compromised skeletal system. This unavoidable effect could negatively impact the ability to heal, and complicate the patient’s course in the ICU if the patient survives a code.

    And here:

    Defibrillation (Shocking)

    Defibrillation is used when the heart stop beating effectively on its own. (If the heart stops beating and shows no electrical activity, this is known as asystole (flat line): per ACLS protocol this is not “shockable” and defibrillation is not done, but all other CPR/ACLS treatments are done). Two large sticky pads with cables are applied to the chest and attached to a machine called a defibrillator. The defibrillator can deliver various levels of electrical shocks.

    Note: If the heart has lost all of its electrical activity or is so damaged that it no longer has enough muscle to pump blood through the body, defibrillation may not be successful in restarting the heart.

    A warning must be offered here. Family has the choice of coming into the ICU and standing outside the room to observe their loved one go through the process of a ‘code’. Shocking the patient is everything the word implies. Even though the patient is unconscious and will not mentally feel the shock, the body will. The body may forcefully rise off the bed when a shock is given. This can be extremely unsettling for the family to watch.

    “….what do you do now or are you completely retired?”

    A year after I retired I moved into my mother’s to take care of her due to her progressing Alzheimers. During the year before I moved in she had an aide M-F 0800-1500. Mom got to the point where she needed 24/7 supervision. Her aide still follows the same schedule to give me a break. T___ is like family and is very devoted to mom….we’re very good friends. But it has gotten to the point where mom needs to be placed into a facility. We’re fortunate that a new facility opened up whose model is an Alzheimers/Dementia facility ONLY. So, all the residents are in the same dimension…where ever that is!

    “the only thing worse than dying is being kept alive”

    For some reason; religion? ethics? morals? – AWD

    Yes, yes, and yes. Under “Finding Comfort in Your Decision” the objective was to try and clear away the ‘smoke and mirrors’ that hamper making an objective, intelligent, and merciful decision.

    ____________________________________________________

    Finding Comfort in Your Decision

    When a family member, or family, is in the position of having to make decisions for a loved one about continuing, limiting, or withdrawing life-support, viewing the decision through the eyes of your loved one may ease the pressure and pain. A valuable gift is given when you honor what you know what your loved one would want. The guiding questions to consider are:

    What would your loved one want if the risks and potential outcomes of life-support efforts were completely understood?

    What quality of life would your loved one find acceptable?

    What is so important to your loved one’s life that they would be willing to accept possible adverse effects of life-support efforts, and/or a potential for a reduced quality of life?

    Would your loved one be comfortable with the impact and demands a decreased quality of life may have on the family/personal support system, and family/personal resources?

    Another aspect of making life support decisions may require examining. It is of a more personal nature. When faced with considering life support options for someone we love or care about, emotional fear and/or guilt may influence the decision-making process.

    Fear is commonly expressed in: “fear of loss”, “fear of making the wrong decision”, “fear of family reaction”, or a (religious or spiritual based) “fear of retribution”. Evaluate the weight personal fears are having on the decisions and whether the fears are justified. Then ask the heart whose interests are best served by holding on to the fear versus letting go of the fear. These are acts of gracious and thoughtful reflection.

    Feelings of guilt can stem from personal religious or spiritual belief systems, cultural values, or the relationship history (past or present) with the one for whom life support decisions are being made. Experiencing and working through any fear or guilt associated with making these decisions is unique to each individual and family unit.

    Life-support decisions based on these emotions could create a contradiction by shifting the focus. The focus could go from what your loved one would desire, to what you desire. The wisdom of this would have to be determined by the decision maker(s). Whatever the decision is: the Critical Care Team will support it, and continue to professionally serve, assist, and provide comfort and care to the patient and family.
    ____________________________________________________

    I am my mother’s MPOA. She has a DDNR. I made a binder that includes: medical history, list of medications & a weekly MAR (Medication Administration Record) including PRN meds, labs, EKG, CXR results, other Radiology results, list of her doctors w/ phone #s, a prioritized emergency contact list, a DDNR (original plus an original copy taped to the front of the refrigerator), weekly weights, BMs, blood sugars….Honey I got it all! Oh yeah….ICU nurses can be effin anal.

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    24th February 2014 at 11:14 pm

  8. IndenturedServant says:

    Though I understand the intent, more laws are not the answer. Plan and simple the central bank and their thin air money machine is what enables nearly all of the bullshit we are experiencing. Once the dollar collapses and the payola goes away we will all be forced to live within our means. So many of our problems will be solved with absolutely no effort that it will make your fucking head spin. I hope I live long enough to see it……..as long as it is not at someone else s expense.
    I_S

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    24th February 2014 at 11:22 pm

  9. IndenturedServant says:

    In 1991 we had to fly home from the UK because the Red Cross had called and said my father-in-law was not expected to survive the night. We made the flight to Minneapolis St. Paul and drove to WI where he lay in a hospital bed arriving just in time for his very last lucid moments. I’m glad my wife got those final minutes with him.

    He had lymphoma that created a tumor on his intestine and when they did chemo/radiation it shrank the tumor which led to peritonitis. The chemo had destroyed his ability to fight the infection and he went downhill pretty quick. We were offered an experimental drug that would supposedly boost his immune system and it started to work but was offered too late according to what we were told. For a few days they gave him the experimental drug, antibiotics and dopamine to keep his blood pressure up and enough narcotics to keep him out of pain. His extremities turned blue as did his lips. The doc shot straight with us at our request and said that if he lived his life would be radically different. Upon hearing that everyone instantly and unanimously agreed to let him go. He was only 60.

    The bad part was that once they discontinued the treatment designed to save him and increased the narcotics he improved and hung in there for almost 4 days. The docs were pretty sure he would slip away in hours but he persisted. One of his daughters began questioning the decision as she interpreted his “hanging on” as fighting to live.

    Luckily his entire illness from first doctor visit to death was about 30 days. When we returned to his home all of his tools were out as he had been prepping the house and things for winter. It was just like he had knocked off for the day and never got back to it. I finished up the work that needed to be done, attended the funeral and we headed back overseas. Except for the one daughter I don’t think anyone questioned the decision. He never had any final orders but we knew he would not be happy had he survived. It was a damn shame too because I had barely got to know the man but we got along like old friends. I hope I’m as “lucky” as him when my time comes.
    I_S

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    24th February 2014 at 1:50 am

  10. Gayle says:

    Those articles by doctors are quite revealing. They and AWD have seriously enlightened me about the dilemmas and sometimes helplessness faced by doctors trying to give reasonable treatment at the end of life. I had no idea end-of-life directives are routinely ignored or discarded; I’ll be thinking about rewording mine.

    My mother died after a brief illness at 84. My dad died of a hear attack while eating lunch In his mid-seventies. Both grandmothers died around 80 after brief illnesses. One grandfather died while sitting in church and the other while sleeping in bed. A great grandmother died in her sleep at 95, and another one suffered from dementia and was not physically sick except for briefly. Thankfully, I have not experienced the kinds of torturous situations recounted in this thread.

    I know of an elderly woman who was chronically ill and who told her spouse that if he moved her to a nursing home she would starve herself. He moved her anyway, and in a short time she was dead, having followed through on her promise.

    As for me, I’m planning to expire from pneumonia at 85. It won’t take too long, but I’ll be able to say goodbyes.

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    24th February 2014 at 3:55 am

  11. hardscrabble farmer says:

    This piece brought tears to my eyes, not something I can say happens very often. If I were you I would shop that around independently to see if you can find a buyer because that seems like one hell of a worthwhile endeavor that would benefit an uncalculable number of people. You should be very proud of yourself for your efforts to help people in times of sadness and stress to understand the complexities of death. Too many Americans have become divorced from the process and no longer understand just how natural it is and how painless it ought to be for the dying as well as the living they leave behind.

    We cared for my paternal grandparents as well as my mother into their final days and hours, all of them passing away in the comfort and security of their own beds surrounded by famly and friends. The loss of my Mother five years ago was particularly difficult- she was diagnosed with terminal cancer only 10 days before she died and in the end she was in a great deal of pain- I cannot think of a more difficult thing than to watch the person who brought you into the world leave it in such discomfort, but we did everything we could to make their ends as decent as humanly possible. I give much credit to my wife- none of these people raised her, she married into my family- but she treated them as if they had been her own. We made the decision to care for each of them on our own- no nurses, no extraordinary medical interventions- because they wished to go that way and they deserved having those they loved and trusted handling their most personal needs rather than paid strangers. As hard as it was I wouldn’t trade those experiences for anything and I am proud of my family for having the strength and the character to do what was neccessary when it was most difficult.

    In the end we all need very little, but the love of those whom we have loved our whole lives is the one thing that makes those last moments endurable and gives us the peace we need for a final rest.

    Thank you for this- please try and spread it around so that more people can read it and be given a chance to do the right thing for someone they love.

    Well-loved. Like or Dislike: Thumb up 11 Thumb down 0

    24th February 2014 at 7:08 am

  12. chicago999444 says:

    I was about to post another response to Gayle’s excellent “The Problem of Mercy” when this equally compelling post appears.

    After enough time passed to dull the sharp edges of grief over my mother’s death at 80, I had to know that she died as she wanted to: in her own home with her children at her side, with a view of her beloved trees, and most of all QUICKLY and with minimal pain. It is normal for someone to die at 80 and you have to know that your parents’ passing is inevitable. And better they pass before you than you pass before them. No loving parent should have to see her children die- there is nothing so cruel. Mom lived a normal human lifespan, mostly in reasonable comfort, with minimal hardship in a country in its high, with a loving family, and the wherewithal to enjoy her life and do the things she wanted to do. Beside all that, the temporary hardships of her young adulthood- the failed marriage, the bum husband, the lost house and the wrecked cars-were very minor bumps in relatively smooth road that was her life.

    Would it be that every decent human should have the same life, and the same death. Are you broke? Your marriage falling apart? The career you dreamed of your whole life become a total bust? You’re financially struggling? No big deal. If you have your health and you aren’t starving or homeless, you’re OK. If you can live to 75 or 80, with reasonable health, and go quickly with only brief pain, you’re lucky. And if you don’t lose the people you love the most at far too early an age, to cruel deaths preceded by even crueler lives, you and they are lucky.

    By the time you’re my age, 61, you have watched a lot of people die, and a lot of them are way younger than you, far too young to die. The tragedy of a youngster of 35 or 40 passing from some deadly cancer after much suffering is almost unbearable, and still worse is some innocent, still young, energetic, and with a great future ahead of him or her, going out in a car accident, or God Forbid, as the victim of a vicious crime. When someone dies far too young of an accident or illness, you only hope that perhaps he was spared worse down the road. Maybe he was spared a future of tragedy and disappointment that would make him wish he had passed far younger. But for the innocent victims of vile crimes, who died in terror and great suffering, you’re just struck numb by the unfairness and cruelty of it, that it’s even possible for a child of 8 or a blooming young adult, to have to die in such an ugly way.

    There’s no “mercy” in extending life infinitely, no mercy and no value in it. The cases in this post are cases of cruelty and almost vile selfishness on the part of the children in the first example, of the 85 year old woman who is kept alive only by dialysis and is in a semi-vegetative state, but not quite vegetative enough to mitigate her suffering. This woman’s life is extended only at the cost of extending and increasing her suffering, never mind the massive financial cost.

    And, while one hates to bring up money in such a discussion, we have to know that the resources being allocated to keeping this woman breathing are diverted away from the 5 year old with cancer who could live, from some innocent ghetto dweller who caught a bullet not intended for her but is paralyzed from the neck down all the same, from many, many people who could live and reap real benefit from the resources being mustered to “save the lives” of people who are, categorically speaking, dying. Because when you are 80, 85, 90 years old, you are DYING even if you seem to be in good health.

    For my own part, I intend to have mercy on myself, my nieces and nephews, and on the world around me. I must get to my attorney and get my living will written this week, one of those little chores you put off because it doesn’t seem terribly urgent right now. But I’m prepared to do more than just let the end come. I have no intention of suffering for years on end and burning through every dime I have to extend my life, or even ease my suffering. When I sense the end is coming, or if I am diagnosed with a progressive illness like dementia, I’ll pre-empt the process. I know how to do it, had an old friend who did it at age 53. I’ll go exactly as he went, with dignity, making sure I leave no messes to clean up, if only out of respect for the survivors.

    Well-loved. Like or Dislike: Thumb up 5 Thumb down 0

    24th February 2014 at 11:44 am

  13. Hollow man says:

    How about a common sense thought to Mercy.

    Like or Dislike: Thumb up 0 Thumb down 0

    24th February 2014 at 5:46 pm

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