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man o' the year

Thousands 'not Told About' Do Not Resuscitate Orders

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http://www.bbc.co.uk/news/uk-36184760

The Royal College of Physicians' audit of 9,000 dying patients found one in five families had not been told orders had been imposed on their relative.

WIth my father having been in hospital for several months this one was close to home. It was only fortuitous that in conversation during one of my daily visits that he mentioned something that "a doctor" had said to him that day. At 91 years old he had not taken in the consequences of what he had said in reply and when I asked I did find that a DNR notice had been put on him without my involvement.

Not only this but also when I asked for it to be taken off I had a staff nurse stamping her foot at me like a 4 year old and over the next days when I asked the notice had not been removed even though they had then confirmed that my father wished for this to be taken off. It took 4 more days of asking before it was taken off.

Within a week my father had developed hospital acquired flu which saw him fighting for his life and rushed under blue light from Newark hospital to Kings Mill Mansfield into resuscitation. Fortunately he has overcome the HAI.

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I'd like to die under a bush

...better than in hospital then?......dying in your sleep is the better alternative, on or under a bush.

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I'd like to die under a bush

There's a thought. In a bush, having just seeded it. Hmmm, maybe not quite fair, but ...

A few times in life I've extended myself beyond what's wise. Most usually in the mountains when departing from the routes shown on the map. Now that would be a fine way to go - at least if it were quick (a falling boulder to exercise mercy, or something like that).

As for DNR, wouldn't you rather die than linger on with a terminal disease and no prospect of ever again getting out of bed?

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The OP story of the nurse is truly disturbing.

The only person that can give consent is a right thinking adult, and if that is not the patient, there are strict procedures to adhere to under the various mental health acts.

If your father is competent of making a decision, then he can withdraw the DNR at any time. The nurse was being, shall we say, obtuse.

I can tell you, that during my short stay on a care of the elderly ward, this issue came up several times...a patient was revived but there was a DNR on the file.

They found an answer...make sure the DNR request was the first thing you came to when you opened the notes file. then some other form was found to be important, and that too had to be the first form you saw, then another.

Total shambles...but what else could they do what with patient confidentiality, you cant mark it on the board above the patient, there are 25 things that are priority, and you have 24 hour cover where every member is supposed to know everything about the patient.

Dont get me started on handovers.

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The OP story of the nurse is truly disturbing.

The only person that can give consent is a right thinking adult, and if that is not the patient, there are strict procedures to adhere to under the various mental health acts.

If your father is competent of making a decision, then he can withdraw the DNR at any time. The nurse was being, shall we say, obtuse.

.....this is true, but when someone is sick and sometimes confused, all be it healthy of mind, they will often sign what the doctors advise them to sign because they trust the doctors will do all they can for them...their life is in their hands.

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I think given the choice, most people would prefer to die at home around their families.

Something I don't quite understand. The memory of a loved one having gasped out their last dying breath, their last clutched at words, their last squeeze of a warm hand, being trapped forever in a room in the family house?

Imagine sitting there every night following the death, eyes lifting to the ceiling to the room where dad died, or gran passed, or your sister screamed in pain before her lungs gave out their last smidgeon of help and she too fell to the man on the pale horse.

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.....this is true, but when someone is sick and sometimes confused, all be it healthy of mind, they will often sign what the doctors advise them to sign because they trust the doctors will do all they can for them...their life is in their hands.

That makes the document illegal under the mental health acts, safeguarding et al. If the person is incapable due to sickness, confusion, then a close relative who acts as Guardian must be sought out, if not, there are inumerable things to do before a lawful consent is obtained due to incapacity.

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Something I don't quite understand. The memory of a loved one having gasped out their last dying breath, their last clutched at words, their last squeeze of a warm hand, being trapped forever in a room in the family house?

Imagine sitting there every night following the death, eyes lifting to the ceiling to the room where dad died, or gran passed, or your sister screamed in pain before her lungs gave out their last smidgeon of help and she too fell to the man on the pale horse.

Perhaps you're looking at it from the perspective of those left behind, rather than the deceased?

Hard though the future associations might be for family and friends, I think I'd prefer to be surrounded by what's familiar when I die so I can concentrate on the moment.

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Perhaps you're looking at it from the perspective of those left behind, rather than the deceased?

Hard though the future associations might be for family and friends, I think I'd prefer to be surrounded by what's familiar when I die so I can concentrate on the moment.

I am. Having not died yet, I have no viewpoint from the other side.

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Perhaps you're looking at it from the perspective of those left behind, rather than the deceased?

Hard though the future associations might be for family and friends, I think I'd prefer to be surrounded by what's familiar when I die so I can concentrate on the moment.

The loss, the grief, the last memory are only there and real for those that are left behind..... ;)

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I think I will have "Best not to resuscitate" tagged on me when I'm old and ill in hospital. Unless it's a wager of course.

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I am. Having not died yet, I have no viewpoint from the other side.

Me neither (as far as I know) - but generally when faced with the unfamiliar and perhaps traumatic - I like to keep as much as possible familiar close by.

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Me neither (as far as I know) - but generally when faced with the unfamiliar and perhaps traumatic - I like to keep as much as possible familiar close by.

Which bit of the familiar room do you need as you are gasping your dying seconds: the wallpaper, the bed, the furniture around, the cat sat on the stairs, or the warm hand that will hold yours until it is cold?

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I think I will have "Best not to resuscitate" tagged on me when I'm old and ill in hospital. Unless it's a wager of course.

Your tattooist awaits.

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Which bit of the familiar room do you need as you are gasping your dying seconds: the wallpaper, the bed, the furniture around, the cat sat on the stairs, or the warm hand that will hold yours until it is cold?

Perhaps I will draw comfort from them all. Where I live currently - it is the view of the garden and nearby woodland I'd like most like to have close by. And my suspicion is that for most the dying process will take longer than a few seconds.

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Perhaps I will draw comfort from them all. Where I live currently - it is the view of the garden and nearby woodland I'd like most like to have close by. And my suspicion is that for most the dying process will take longer than a few seconds.

I think so too, which is why the relief of pain will I suspect be the major player.

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Tracey, R (On the Application Of) v Cambridge University Hospitals NHS Foundation Trust & Ors makes it clear. Patients have a right to be consulted on decisions not to attempt CPR in the event of cardiac arrest, but their consent is not required.

The NHS Constitution says: "You have the right to be involved in discussions and decisions about your health and care, including your end of life care, and to be given information to enable you to do this. Where appropriate, this right includes your family and carers."

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Just to clarify - we ended up with a stand up argument in the ward in front of other patients. Dad is far from gaga but had not had anything explained to him properly.

It was truly ironic that had the DNR notice been in place he would no longer be here now.

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When I was in hospital back in January the consultant would come in daily and do his rounds with his patients. One morning he came in and, when looking at the records of an elderly lady patient opposite me, commented "Someone has put a DNR on here.".

Now, the bizarre thing is - he was the guy in charge of her treatment. The only other people I saw looking at this lady's charts were the nurses.

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Having done resucitations in a professional capacity, they are a brutal affair with on the whole, disappointing outcomes.

To attempt CPR in front of relatives as the patient's ribcage audiably cracks and snaps under my compressions is gruesomely terrible.

As porca has joked about having the legend "DO NOT RESUS" tattooed across one's chest - there is more than a little good sense in that.

I post this article in it's entirety - please read and disseminate. It explains my feelings and understanding of matters far more eloquently than I ever could and it served me and my mother well when her end of life care was being discussed - I understood the implications of prolonged medical care; most people do not and make unreasonable requests on both the medical staff and their dying loved one.

http://www.zocalopublicsquare.org/2011/11/30/how-doctors-die/ideas/nexus/

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 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 overtreatment.

But doctors still don’t over-treat themselves. They see the consequences of this constantly. 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’d hang 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.

Ken Murray, MD, is Clinical Assistant Professor of Family Medicine at USC.

Thank you for reading this - I hope it serves everyone well in the (distant) future

Knock Out Johnny

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I had this choice with my father.

The Doctor and two nurses took me into a room to tell me my father was near the end of his life.

He was 96!

I was older than all of them and told them that I had seen quite a few people die, and all that I wanted for him was to be comfortable and happy.

He had dementia by then.

I felt that nature had vouchsafed a comfortable slide from normality, via coma to death and I told the doctor etc. that I saw no reason to interfere with the course of nature.

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