Article: How Doctors Die

[Deleted]

One of my friends posted this poignant column on FB. It's also MMR (death panels, dun dun dun!)

ETA: Some of the descriptions of sickness and death in this column and the one posted as a reply may be upsetting.

www.saturdayeveningpost.com/2013/03/06/in-the-magazine/health-in-the-magazine/how-doctors-die.html

How Doctors Die
By: Ken Murray, M.D.

Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie 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 family and feeling as good as possible. 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 a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.

Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen—that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).

Almost all medical professionals have seen too much of what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.

To administer medical care that makes people suffer is anguishing. Physicians are trained to gather information without revealing any of their own feelings, but in private, among fellow doctors, they’ll vent. “How can anyone do that to their family members?” they’ll ask. I suspect it’s one reason physicians have higher rates of alcohol abuse and depression than professionals in most other fields. I know it’s one reason I stopped participating in hospital care for the last 10 years of my practice.

How has it come to this—that doctors administer so much care that they wouldn’t want for themselves? The simple, or not-so-simple, answer is this: patients, doctors, and the system.

To see how patients play a role, imagine a scenario in which someone has lost consciousness and been admitted to an emergency room. As is so often the case, no one has made a plan for this situation, and shocked and scared family members find themselves caught up in a maze of choices. They’re overwhelmed. When doctors ask if they want “everything” done, they answer yes. Then the nightmare begins. Sometimes, a family really means “do everything,” but often they just mean “do everything that’s reasonable.” The problem is that they may not know what’s reasonable, nor, in their confusion and sorrow, will they ask about it or hear what a physician may be telling them. For their part, doctors told to do “everything” will do it, whether it is reasonable or not.

The above scenario is a common one. Feeding into the problem are unrealistic expectations of what doctors can accomplish. Many people think of CPR as a reliable lifesaver when, in fact, the results are usually poor. I’ve had hundreds of people brought to me in the emergency room after getting CPR. Exactly one, a healthy man who’d had no heart troubles (for those who want specifics, he had a “tension pneumothorax”), walked out of the hospital. If a patient suffers from severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal, while the odds of suffering are overwhelming. Poor knowledge and misguided expectations lead to a lot of bad decisions.

But of course it’s not just patients making these things happen. Doctors play an enabling role, too. The trouble is that even doctors who hate to administer futile care must find a way to address the wishes of patients and families. Imagine, once again, the emergency room with those grieving, possibly hysterical, family members. They do not know the doctor. Establishing trust and confidence under such circumstances is a very delicate thing. People are prepared to think the doctor is acting out of base motives, trying to save time, or money, or effort, especially if the doctor is advising against further treatment.

Some doctors are stronger communicators than others, and some doctors are more adamant, but the pressures they all face are similar. When I faced circumstances involving end-of-life choices, I adopted the approach of laying out only the options that I thought were reasonable (as I would in any situation) as early in the process as possible. When patients or families brought up unreasonable choices, I would discuss the issue in layman’s terms that portrayed the downsides clearly. If patients or families still insisted on treatments I considered pointless or harmful, I would offer to transfer their care to another doctor or hospital.

Should I have been more forceful at times? I know that some of those transfers still haunt me. One of the patients of whom I was most fond was an attorney from a famous political family. She had severe diabetes and terrible circulation, and, at one point, she developed a painful sore on her foot. Knowing the hazards of hospitals, I did everything I could to keep her from resorting to surgery. Still, she sought out outside experts with whom I had no relationship. Not knowing as much about her as I did, they decided to perform bypass surgery on her chronically clogged blood vessels in both legs. This didn’t restore her circulation, and the surgical wounds wouldn’t heal. Her feet became gangrenous, and she endured bilateral leg amputations. Two weeks later, in the famous medical center in which all this had occurred, she died.

It’s easy to find fault with both doctors and patients in such stories, but in many ways all the parties are simply victims of a larger system that encourages excessive treatment. In some unfortunate cases, doctors use the fee-for-service model to do everything they can, no matter how pointless, to make money. More commonly, though, doctors are fearful of litigation and do whatever they’re asked, with little feedback, to avoid getting in trouble.

Even when the right preparations have been made, the system can still swallow people up. One of my patients was a man named Jack, a 78-year-old who had been ill for years and undergone about 15 major surgical procedures. He explained to me that he never, under any circumstances, wanted to be placed on life support machines again. One Saturday, however, Jack suffered a massive stroke and got admitted to the emergency room unconscious, without his wife. Doctors did everything possible to resuscitate him and put him on life support in the ICU. This was Jack’s worst nightmare. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later.

Even with all his wishes documented, Jack hadn’t died as he’d hoped. The system had intervened. One of the nurses, I later found out, even reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it, of course; Jack’s wishes had been spelled out explicitly, and he’d left the paperwork to prove it. But the prospect of a police investigation is terrifying for any physician. I could far more easily have left Jack on life support against his stated wishes, prolonging his life, and his suffering, a few more weeks. I would even have made a little more money, and Medicare would have ended up with an additional $500,000 bill. It’s no wonder many doctors err on the side of over-treatment.

But doctors still don’t over-treat themselves. Almost anyone can find a way to die in peace at home, and pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures. I was struck to hear on the radio recently that the famous reporter Tom Wicker had “died peacefully at home, surrounded by his family.” Such stories are, thankfully, increasingly common.

Several years ago, my older cousin Torch (born at home by the light of a flashlight—or torch) had a seizure that turned out to be the result of lung cancer that had gone to his brain. I arranged for him to see various specialists, and we learned that with aggressive treatment of his condition, including three to five hospital visits a week for chemotherapy, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me.

We spent the next eight months doing a bunch of things that he enjoyed, having fun together like we hadn’t had in decades. We went to Disneyland, his first time. We hung out at home. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital foods. 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.

Torch was no doctor, but he knew he wanted a life of quality, not just quantity. Don’t most of us? If there is a state of the art of end-of-life care, it is this: death with dignity. As for me, my physician has my choices. 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 my fellow doctors.

[feistypants]

This reminds me of the nurse's version of this:
m.nypost.com/p/news/opinion/opedcolumnists/diary_of_an_intensive_care_nurse_CBwftCaoNoMDGkJabyTo0K

Diary of an Intensive Care Nurse
By Kristen McConnell


Last year I graduated from nursing school and began working in a specialized intensive care unit in a large academic hospital. During an orientation class, a nurse who has worked on the unit for six years gave a presentation on the various kinds of strokes. Noting the difference between supratentorial and infratentorial strokes — the former being more survivable and the latter having a more severe effect on the body’s basic functions such as breathing — she said that if she were going to have a stroke, she knew which type she would prefer:
“I would want to have an infratentorial stroke. Because I don’t even want to make it to the hospital.”


She wasn’t kidding, and after a couple months of work, I understood why. I also understood the nurses who voice their advocacy of natural death — and their fear of ending up like some of our patients — in regular discussions of plans for DNR tattoos. For example: “I am going to tattoo DO NOT RESUSCITATE across my chest. No, across my face, because they won’t take my gown off. I am going to tattoo DO NOT INTUBATE above my lip.”
Another nurse says that instead of DNR, she’s going to be DNA, Do Not Admit. We know that such plainly stated wishes would never be honored. Medical personnel are bound by legal documents and orders, and the DNR tattoo is mostly a very dark joke.
But the oldest nurse on my unit has instructed her children never to call 911 for her, and readily discusses her suicide pact with her husband. You will not find a group less in favor of automatically aggressive, invasive medical care than intensive care nurses, because we see the pointless suffering it often causes in patients and families.


Intensive care is at best a temporary detour during which a patient’s instability is monitored, analyzed and corrected, but it is at worst a high-tech torture chamber, a taste of hell during a person’s last days on earth.


Choices you don’t always have


I cared for a woman in her 90s whose family had considered making her a DNR but decided against it. After a relatively minor stroke that left her awake but not lucid, “Helen” went into kidney failure and started on continuous hemodialysis. Because she kept pulling out her IV lines and the feeding tube we had dropped into her nose and down to her stomach, we put boxing glove-like pillow mitts on her hands.
When I approached with her medicine, Helen batted at me with her boxing gloves, saying, “NO. STOP.” She frowned, shook her head and then her fist at me. Her wishes were pretty clear, but technically she was “confused,” because when asked her name, the date and her location, she failed to answer.


During the next shift, Helen’s heart stopped beating. But despite talking with the doctors about her advanced age and the poor state of her health, her family had nonetheless decided that we should “do everything we can” for her, and so Helen died in a frenzy of nurses pumping her with vasopressors and doing chest compressions, probably cracking several ribs.


That was a situation in which a patient’s family made a decision that probably caused Helen to suffer and did not help her. But there are circumstances where it is the health-care team that chooses to push on with intensive interventions. And there are circumstances where bureaucracy, miscommunication and the relatively low priority, among very busy physicians, of making decisions about how far to pursue medical care cause patients to linger in the ICU weeks past the point when any medical professional thought meaningful recovery was possible.


Consider another example, of a patient with advanced cancer, in this case an elderly woman with a well-informed husband who knew his wife was dying and that she didn’t want to end her life with an extended ICU stay.


After her last tumor resection, this woman developed an infection, and during a meeting with her husband the attending physician explained that the main problem we were immediately dealing with was the infection, which was bad and could well be something she would not recover from.


The patient’s husband explained that he knew that his wife didn’t want to be there and that her underlying diagnosis plainly meant that her life was going to end, that they both understood this and didn’t want to painfully draw things out. Then he asked if he had any decisions to make — in effect being as blunt as he could without simply insisting that they withdraw care then and there.


The doctor said no. She said that the patient needed to complete the course of antibiotics to see if the infection could be cured, after which they could approach the question of whether to continue with intensive medical care. I imagine the doctor saw some distinction between letting the patient die of her primary, terminal diagnosis and letting her die of a complication. So the husband’s efforts to stick up for his wife went unheard, and she stayed in the ICU, comatose, for about two more weeks — quite the opposite of her stated wish — before everyone agreed to let her go.


On the other side of the spectrum are the poor forgotten patients, the ones who linger because nobody will speak up for them and the medical team is not legally allowed to decide to do anything short of maintaining life, day after day.


The terrible indignity of the ICU


These patients had different injuries and different circumstances. What was common to them was that they all suffered the bodily harm and indignity of being physically invaded in every sense, robbed of their integrity entirely and pinched and poked continuously during the last days and weeks of their lives. Since nobody at the time thought they were going to get better, the people doing this to them — myself and other nurses — had an overarching question: Why?


All of us love the opportunity to help save a life. That happens in intensive care, and it is exciting and miraculous. But in the instances I’ve described, and many, many others, nobody involved is under the delusion that a life is being saved.

The absurdity weighs me down, and so I want to describe it to you. Medical science can do incredible things. But you would not believe the type of life these life-sustaining treatments often allow.


People who are at the end of their life and are being kept alive artificially have a way of shutting down. Fighting this process is not a peaceful act.
Most of the patients I’ve described were on ventilators, with plastic tubes pushed into their mouths and down their tracheas in order to provide respiratory support. The tubes are taped to their faces, and patients who can move at all are usually both tied down by their arms and sedated when on a ventilator, because it is so physically uncomfortable that patients will use their last ounce of strength to pull the tube out of their mouth. These patients were already comatose due to their injuries, but other critically ill patients who were previously awake and responsive become unable to speak while on a ventilator.


Once intubated, patients are unable to clear their respiratory secretions — phlegm — and so we stick smaller rubber tubes connected to suction into the breathing tube, down their trachea and towards the entrance to the lungs themselves, in order to vacuum the secretions out of their lungs. You can imagine that this too is uncomfortable.
Patients obviously can’t eat, so they will have had a feeding tube pushed up their nose or through their mouth and their esophagus, down into their stomach. This often takes a few tries, requiring us to pull up the bloody tube, re-lube it and push it back in at a different angle.


If a patient is ill long enough, these instruments will be replaced with a tracheostomy in the neck rather than a tube down the mouth and a feeding tube going directly into the stomach rather than down through the nose. These are for patients who aren’t expected to be able to eat or breathe independently in the long term.
These patients often develop diarrhea, sometimes simply because of the liquid food they receive — cans of smelly, nutritionally balanced tan-colored slush — and sometimes because they’ve acquired a very hardy and aggressive bacteria, C. difficile, that is widespread in hospitals and causes profuse, foul stool. If they have diarrhea several times a day and their skin is exposed to it, the skin begins to break down, and so we place a rectal tube in their bottom, held in place beyond the rectum with a small water filled balloon.


The diarrhea drains into a clear bag that hangs on the side of the bed. Sometimes when a patient is very sick, as in the case of the man whose family avoided him for over a month after his stroke landed him on my unit, they lose their rectal tone and the tube falls out.


This is how I found myself up to my elbows in diarrhea with another nurse, struggling to clean the crevasses of his body and tape an ostomy bag around his bottom, the last hope to contain the flow of stool so that the patient wouldn’t sit in a continuous puddle of it while permission for his death was pending.


Only two ways to die


Breathing tubes, feeding tubes and rectal tubes are only part of it. The patients of course have urinary catheters and IVs, often larger IVs that are placed centrally — threaded straight toward the heart to allow us to push drugs in concentrations that would damage smaller veins.


Healthier hospitalized patients complain sometimes about their IVs and frequently about their urinary catheters — a rubber tube up your urethra isn’t pleasant.


If the patients I’m describing could talk, though, I think the urinary catheter would be the least of their complaints. In addition to the invasion of tubes, ICU patients live in a world of bright lights and loud alarms, continuous stimulation. People pry open their eyes and shine flashlights into them, then pry open their mouths.


We treat most patients with small shots of heparin in their subcutaneous flesh, in order to prevent blood clots. This makes them bruise easily, and patients who have been with us for a while are often peppered with tiny bruises from the shots. Then there are the bigger bruises caused by painful stimulus given by doctors and nurses who are monitoring the arousability of the patient, the depth of their coma. If he doesn’t wake up when you shout, or when you shake him, what about when you pinch and twist his trapezius muscle?


It’s been said that dying is easy, and it’s living that’s painful. Not so in the world of intensive care. Patients who have a hope of recovering from their injury, genuinely surviving it, may be fighting to live. For them the torturous days as an ICU patient are required in order to surmount their injury. And there are always cases where nobody knows what the outcome may be, where the right thing to do is maintain physical function and give the body time to heal.
Many patients will survive with deficits, will not return to their former selves but will be able to leave the hospital, go to rehab, begin the hard work of adjusting to another kind of life.


But time and again we care for patients who are fighting to die, and having a very hard time of it, because in the ICU there are only two ways to die: with permission, too often not granted or granted too late, or in the last-ditch fury of a full code blue.


Forging a better end


We are not helping these people by providing intensive care. Instead, we are turning their bodies into grotesque containers, and reducing their lives to a set of numbers monitoring input and output, lab values and vital signs, which we tweak to keep within normal ranges by adjusting our treatments, during the weeks and days immediately preceding their death. This is the opposite of what should be prioritized when a person is known to be nearing the end of their life without the hope of getting well.


I want this to change. People who choose to do the work of caring for the gravely ill must concentrate on monitoring and responding to changes in their vital signs, administering their medications, examining all of their physical systems, coordinating their various tests and procedures, bathing them and cleaning up their bodily messes, dressing their wounds, keeping them comfortable and communicating with their families.


I don’t think that we should also have to deal with feeling that our work is morally questionable and, at times, reprehensible.


Americans have a lot of work to do in developing a more sensible, fairer and less wasteful health-care system. That work needs to include taking a hard look at the conditions of patients whose lives may end in intensive care, both at the level of the entire health-care system and at the level of the individual — our wishes for ourselves and our family members whose health is failing or has already failed.


Our goal is to help these people, and assuming that prolonging their lives for the longest time possible is the only way to do this is a foolish and harmful mistake.

[feistypants]

There have been days recently at work where we've coded the same patient -- CPR, rounds of IV meds, invasive line placement, shocking lethal heart rhythms -- more than once in a shift. Their families come and look at them, lying naked in their beds, frail and covered in blood, and ask us to "do everything we can."


In contrast, a physician I work with has a blanket DNR/DNI order. It doesn't matter if he just needs surgery. If he isn't able to consent to the procedure, he doesn't want it done. I have a very specific living will that spells out my wishes in various circumstances.


I love articles like these that force conversation about end of life care. Just because we can doesn't mean we should.

[Deleted]

Jul 11, 2013 14:59:06 GMT -5 feistypants said:

I love articles like these that force conversation about end of life care. Just because we can doesn't mean we should.

Yeah, it's actually kind of disturbing to me to read it spelled out as in those columns.

[mellymel]

Thank you for sharing. This makes me think of my Dad. He died a little over a year ago from complications from a bone marrow transplant - he was battling leukemia.

When it was clear that the Graft vs Host Disease was steroid refractory (not responsive to treatment after X number of days) my Dad's doctor had a very difficult conversation with us about a DNR for Dad. It happened so fast that we were devastated by this conversation. We were still holding out hope.

We never had to sign that DNR. Dad died just a couple days later before we could finalize anything. He developed a brain bleed. His neurologist wanted to try to save him. His hematologist/oncologist had to explain to the neurologist right in front of us that the method used to save my Dad had a 100% mortality rate for bone marrow transplant patients. We knew what we had to do anyway.

I will never forget standing there and having to ask the doctor if there was a way to, for lack of a better word, expedite his death. He was in so much pain and suffering. Doctor offered to keep him comfortable with pain meds. Dad went on his own before the pain meds even arrived.

If I had a crystal ball and knew what the outcome would be, I am certain none of us would have wanted him to try the transplant. He was only 57, though.

Anyway, it has made me think about my own end of life care preferences quite a lot. My sister and I are both terrified of leukemia and aren't quite sure we would even put up a fight if diagnosed.

[vanillacourage]

Thank you for posting.  My dad was just here for a visit and I meant to talk to him about this stuff but just forgot.  He's said semi-jokingly before that he never wanted to be "plugged in", but we haven't gotten much more specific than that.  I forwarded him the link and told him I needed some clarity on what an acceptable range of care and quality of life would be for him.

[sparkythelawyer]

These articles really make a person think.

I am grateful for the doctor that looked at my Mom, after diagnosing her pancreatic cancer, and said, "If you were my wife, I would take you home, call hospice, and keep you comfortable." I could have killed her general doc, who had her admitted after she fell in the bathroom and kept her there, in a semi-private room on a wing under construction, in the hopes he could somehow drain fluid off of her tumors. She was miserable, scared and in pain, and just wanted to go home. Once she was finally able to go home, (after my Dad informed the hospital that as her healthcare POA, he was getting a private ambulance and taking her home AMA by 5pm if they did not discharge her), she died a week later.  At home, with the people that loved her nearby.

But I'm also grateful for the ICU docs and nurses who, even though they knew the overwhelming odds were that my now husband would not live through the night, and that if he did he would be a vegetable, fought their everloving butts off for him. Put him on those vents, the tubes, the catheters, etc. Because of them, he's alive, he's safe, he's healthy and he's my husband.

I guess most of all, I'm glad I don't have to make the decision between when to fight and when not to fight from a healthcare provider perspective.

[Pom]

Thank you for sharing these articles and those of you who posted personal experiences. My dad died at 58 of a massive heart attack and we never had to make these decisions. Honestly, I always felt thankful we didn't have to make the hard choices discussed here. Now my step dad, who I have had longer than my own dad recently had a stroke. Thankfully he is recovering, but it brings all these healthcare issues home.

[drloretta]

And yet my DH wants everything done for him, spelled out in his living will. I dread having to ever deal with that.

[sweetiesparkles]

Wow, great article. Thanks for sharing.

[tacom]

Thank you for sharing.

One of the hardest jobs an SLP has is to counsel patients near the end of life. I had a patient last week who was aspirating everything on his X-ray swallow study. He's almost 90 and has been in and out of the hospital for years, but hes been in more than out recently. And despite no new acute events, he's only getting worse.

We know aspirating food and drink can cause aspiration pneumonia. However, the literature suggests that making a patient with dementia NPO and placing a PEG tube may not prolong life. But families, and patients, sometimes need to feel like they still have valid options. My patient just looked at us and asked us how to fix it. It sucks to not have an answer for that.

Being so close to it and working on the ICU really makes me fear for the repeat surgeries and complications I will likely face with my Crohn's. But I've always been a little less than enthusiastic about drastic procedures. I created a living will in college lol.

[imojoebunny]

Dying is not for the faint of heart.  In the last few years, I have watched my MiL, and 4 grandparents die.  It is easy to say DNR, but it is different when the person is still very much mentally a part of your family and does not want a DNR.  Even when they do, death does not always come easy.  My aunt has pretty severe Alzihmers for example, with no end in sight and no way to end her life, until her body fails, even though her mind is gone, her body is going strong. 

[feistypants]

Jul 11, 2013 16:50:03 GMT -5 tacom said:

Thank you for sharing.

One of the hardest jobs an SLP has is to counsel patients near the end of life. I had a patient last week who was aspirating everything on his X-ray swallow study. He's almost 90 and has been in and out of the hospital for years, but hes been in more than out recently. And despite no new acute events, he's only getting worse.

We know aspirating food and drink can cause aspiration pneumonia. However, the literature suggests that making a patient with dementia NPO and placing a PEG tube may not prolong life. But families, and patients, sometimes need to feel like they still have valid options. My patient just looked at us and asked us how to fix it. It sucks to not have an answer for that.
.

This is another one of those quality vs. quantity of life arguments. We see so many patients like this with families that push for modified barium swallow tests to see if there's aspiration, when we know full well there will be. Actual clinical proof of aspiration leaves our hands tied when it comes to feeding our patients orally. We just can't.

So now, in patients who are close to end of life, our doctors have started explaining that an MBS won't make much difference in the outcome, but that Dad will still get to enjoy his pie and coffee if we don't know. And if it's aspiration pneumonia that's the final cause of death, at least he died happy.

[feistypants]

@sparky -- it's much easier to fight aggressively for someone like your DH, who's young. Youth has a way of breaking through things that should never be survivable.

[savan]

That nurse's article brought tears to my eyes. My mom died from a secondary infection in the cancer hospital ICU over 8 years ago. I guess I should be thankful that my parents had discussed her wishes. Once the doctor's made it clear to us that she had little hope of ever recovering (at that point she was on a ventilator, dialysis, and had a stroke), we pulled the plug. She died immediately.

Everyone was shocked that I didn't keep a 24 hour vigil in her room over those 6 days, but I just kept thinking that wasn't my mom. I knew who my mom was and that woman on that bed with all those machines was not her.

[MrsE]

This is very difficult to read, but I am thankful to the two posters who shared the articles.

[natsnow]

I found myself nodding throughout reading this article. I work in the ER and there are times when I face situations similar to the ones described in the article. it's hard to have those conversations with families. not just because it's a hard time, but because you're afraid of their reaction. what you think is reasonable isnt always aligned with the priorities of the patient's family. they can be downright aggressive and you feel forced to provide futile care, or else they think you don't care or are "giving up on them." it's hard to explain.

[hbomdiggity]

I can't bring myself to read the entire article, but the beginning certainly is ringing true for my dad.

Instead of seeking out the top care he is just fine with going to his local non specialty hospital where he has spent his entire career.

I don't trust him. While he isn't an oncologist and it sure has changed in the 40 some years since he was a resident, he has cared for enough patients as the pcp to know more than he it seems.

[tacom]

Jul 11, 2013 17:02:35 GMT -5 feistypants said:

Jul 11, 2013 16:50:03 GMT -5 tacom said:

Thank you for sharing.

One of the hardest jobs an SLP has is to counsel patients near the end of life. I had a patient last week who was aspirating everything on his X-ray swallow study. He's almost 90 and has been in and out of the hospital for years, but hes been in more than out recently. And despite no new acute events, he's only getting worse.

We know aspirating food and drink can cause aspiration pneumonia. However, the literature suggests that making a patient with dementia NPO and placing a PEG tube may not prolong life. But families, and patients, sometimes need to feel like they still have valid options. My patient just looked at us and asked us how to fix it. It sucks to not have an answer for that.
.

This is another one of those quality vs. quantity of life arguments. We see so many patients like this with families that push for modified barium swallow tests to see if there's aspiration, when we know full well there will be. Actual clinical proof of aspiration leaves our hands tied when it comes to feeding our patients orally. We just can't.

So now, in patients who are close to end of life, our doctors have started explaining that an MBS won't make much difference in the outcome, but that Dad will still get to enjoy his pie and coffee if we don't know. And if it's aspiration pneumonia that's the final cause of death, at least he died happy.

It seriously sucks. My supervisor stepped in with the above case and basically told him that our recommendations are NPO, because it isn't safe for him to eat anything, but he still gets to decide what to do with our recommendations.

Personally, I really hope he continues eating -- if for nothing other than oral pleasure. But, yeah, can't really say that. 

[h]

This doesn't surprise me. My dad, my step-dad, and 7 out of 8 of my first cousins are doctors. When my grandparents and the other elderly relatives in our family were dying, they advised them to stop treatment, took them home, and made sure they were as comfortable as possible until they died. My dad in particular is huge advocate of ceasing treatment when death is imminent and inevitable. When my sister was dying of cancer and it was clear that nothing was going to save her, my parents turned down a last round of chemo, brought her home, became the first people in the neighborhood to buy a VCR when they were still super expensive, and we all basically hung out in our pjs, watched movies, and played board game until she died in her sleep one night.

[vanillacourage]

h, that is a beautiful story about your sister but I'm also sorry for your loss because you must have been pretty young.

[geneg]

Jul 11, 2013 15:13:45 GMT -5 @redbellpeppers said:

Jul 11, 2013 14:59:06 GMT -5 feistypants said:

I love articles like these that force conversation about end of life care. Just because we can doesn't mean we should.

Yeah, it's actually kind of disturbing to me to read it spelled out as in those columns.

I'll chime in here and say that I, along with most of my colleagues in medicine, are very much comfort-care only.  My parents' biggest regret is consenting to a g-tube for my grandfather.  He lived (demented and uncommunicative) for several more years because of the tube.  We didn't want the tube, but my uncle (dad's brother) did.  We consented, he had the surgery, and then uncle left the state and never returned until the funeral.  

My entire family (parents, siblings, etc) has "comfort care only" spelled out plainly in our living wills.  Basically, let us die in comfort, donate what you can, and cremate the rest.  My mom actually sent me that first article when it was initially published.

[h]

Jul 11, 2013 19:49:02 GMT -5 vanillacourage said:

h, that is a beautiful story about your sister but I'm also sorry for your loss because you must have been pretty young.

Thanks. I was 4, she was 8. It has been 32 years, but I still miss her.

[doobeedoo]

Thanks for posting.

[mcfelix]

These are very thought provoking. My best friend's mother passed away almost two weeks ago at a hospice, after battling ovarian cancer. Reading these confirms to me what my friend and I had been talking about - that it was better for her to stop suffering than continue living with a very diminished quality of life.

[starshine1977]

For those of you who know what your parents want, that will be a great comfort for you. When my dad had a stroke and was put on life support, my brother and I (who were 23 and 25 at the time) had no idea what his wishes were. He wasn't married so it was up to us to decide what to do. Luckily we had doctors that let us know that there was no hope because the stroke occurred in his brain stem. After a couple of days (our uncle wasn't ready to give up hope) we took him off life support and he died 5 minutes later. It was clearly the right thing to do and I'm glad we didn't let him suffer long.

[pugz]

I've been working in the ICU this summer and it has been eye opening for sure.


Please have your loved ones complete a durable power of attorney and living will.

[pugz]

Oh hens i am so sorry

[awkwardpenguin]

My dad wanted everything possible done, and it was pretty hard on me because it felt so futile. The oncologist wasn't entirely honest with us about his prognosis (told us median survival was a year, but it's only 4-6 months with brain mets), and I still regret not telling mom and dad the real situation. It is so hard to have that conversation in the moment, and I'm glad mom and I have had a frank conversation about her wishes.

[orangeblossom]

Yes, it's very important to have these conversations. My mother had something like 12 wishes or something like that, that was given to the hospital to fill out. I believe you had to have witnesses and everything, but in the end that wasn't enough, because I guess somewhere in her file there wasn't an actual DNR.

It was frustrating, because a week or so before it really got bad, doctor's suggested we started preparing for the worse. We said okay then, when can she go to hospice. Then they said she couldn't go to hospice. It was very frustrating.

In the end she coded in the ICU (twice I believe) and finally the doctor had to say it was inhumane and to stop any lifesaving procedures (this was before we arrived at the hospital). They said they didn't think it would take long once they stopped the machines, so we got everyone there to say our goodbyes. They moved her to a regular floor that had no previous experience with her. In the end it took about 16 hours (I firmly believe she didn't want to die on my parents anniversary) and she died the next day.

The hospital experience vs a hospice experience (even if it's in a hospital setting is marked). I was less than impressed and was thisclose to cursing someone out. My father was not at the hospital when she passed, so my sister and I called him. He was about 30-40 minutes away. It was taking him some time to get there, and during this time they did the whole reflex testing, so they could declare her dead. The nurse actually asked us could she put her in the bag while we waited for my dad. WTH. HELL NO you can't. She kept bugging us about when my dad was coming and could we call him etc because the shift was changing and the charge nurse was bugging her. Finally she said that there is a time limit as to how long she could be there, but we were not approaching that. One, she should have said that in the beginning and two, if her charge nurse had such an issue the charge nurse should have come.

I know hospice would have been better, and will never understand why they wouldn't allow it when they themselves said it would not be a good existence for her if she lived. I would never want to die in the hospital if I were suffering from a terminal illness.