A few things have changed in medicine over the last few decades. Okay, a lot has changed, and most of it good. But along with the improvements in patient care there has been an exponential increase in expectations. We’ve somehow gone from “your loved one has a life threatening illness and we will do what we can to treat it and in the meantime ensure they don’t suffer” to “your loved one has a life threatening illness that we have the capacity to cure, and if we don’t we will have done something wrong.”
The problem is, last I checked, everyone dies. Let me say that again for good measure. Everyone. Dies. The problem is not with that truth alone, but with the fact that patients with terminal illnesses – and their caregivers – rarely understand their mortality. And when patients and families have unrealistic expectations about what their doctors can accomplish, many people die in a way they never planned for or wanted: in the hospital, dependent on strangers for the basics such as eating and bathing, and often hooked up to machines.
If that makes you feel hopeless, you’re not alone. Many doctors and other healthcare professionals I work with feel that way, too. In the hospital, your code status – whether you want to be resuscitated or not when your heart stops – has become a sort of surrogate for determining whether you really understand your prognosis. Of course, it’s not quite that simple. We know there are other considerations, such as deeply ingrained core values and past experiences with death – good or bad – that play into a patient’s wishes about their death. But the hospital is often the worst place to begin to have these important conversations. Patients in the hospital are sick, they’re scared, and they usually have no prior relationship with the physician who is trying to paint a realistic picture of their condition.
Everyone in healthcare – assuming they don’t have their head in the sand – knows that the system, especially regarding end of life care, is terribly broken. While I believe we are on the path to improving this (within the last year, Medicare approved payment for voluntary end-of-life counseling), we still have a long way to go. But there are things patients can do to take back control of their health and the health of their loved ones.
1. Understand What Resuscitation Is: It almost uniformly involves chest compressions, intravenous medications, mechanical ventilation, and defibrillation. Currently, resuscitation is performed unless a patient has “opted out” in the form of a DNAR order (Do Not Attempt Resuscitation). Many people in healthcare feel that resuscitation should be approached like any other procedure in medicine, requiring consent from a patient to initiate it in the first place. And in the case of resuscitation – when the patient and family goal is not only survival, but a return to prior level of functioning – the chances of success are alarmingly low. After all, if a doctor offered you a surgery that had a 1.7% chance of improving your condition, was painful and distressing, and had to be done without sedation or pain control of any kind, you may just choose not to proceed.
Patients and their family members are often presented with the ever-important “code conversation” in the following way: “If your heart stops or you stop breathing, do you want us to do everything?” For a doctor, it’s a lazy way of asking “Would you want to be
resuscitated?” without explaining exactly what that entails. But what patients often hear is: “Do you want us to do everything or nothing?” or, worse: “I think you might die during this hospitalization.”
Of course, neither of those things is what the physician is really trying to convey with this question. First, there is a lot we can offer in the way of treatment short of resuscitation. Many times, our treatments are able to circumvent the need for resuscitation altogether. And, even if death is unavoidable, there is so much we can offer patients and families to reduce suffering and provide support. We, as a society, often equate doing “everything” will showing our love. (“I will never let mom die.”) Many times, nothing could be farther from the truth. As people age and their chronic illnesses progress, quality of life – rather than quantity of time – should be the central focus. But, as we see too often, it rarely is. Second, we are almost never implying that death is imminent with this question. We try to bring up the issue of code status with every admission. Since we don’t have a crystal ball, we can’t always predict a medical emergency (sometimes, yes, we pretty much know it’s coming). But regardless, we want to be prepared to act, at a moment’s notice if necessary, in a way that respects your wishes.
We, as doctors, as a healthcare system, cannot afford to be poor communicators about this issue. But patients and families, for their parts, cannot afford to be uninformed.
2. Understand What Resuscitation Is Not: It is not a guarantee of survival, and it’s certainly not a guarantee of survival with the same quality of life you enjoyed previously (or even a quality of life you deem acceptable). We’ll talk about this concept a little more below.
Codes are not what Hollywood would have you believe. One study in which the researchers watched 97 episodes of popular medical dramas in the 1990s reported a 75% survival rate for fictional patients immediately after resuscitation and 67% survival rate to hospital discharge. In stark contrast, an article in the Journal of the American Medical Association published in 2013 studied a prediction tool for survival after in-hospital resuscitation. In it, they used four branch points to stratify patients’ chance of survival with a meaningful quality of life: very low (<1%), low (1-3%), average (>3-15%) and higher than average (>15%). That bears repeating. A higher than average success rate for resuscitation was >15%.
Presented another way, the average chance of successfully resuscitating a young, healthy person (when success means the patient is neurologically intact, i.e. not physically or mentally dependent on others) is only 30%. The average success rate of resuscitation in an elderly nursing home resident with several chronic medical issues (who may have even been going along just fine prior to their illness) is 1-3%. For some patients, the success rate approaches zero.
3. Understand Your Health: A young, previously healthy person with a treatable (i.e. fixable) condition is the poster child for resuscitation. Nearly everyone else is not. That’s not to say we should never try CPR in the hospital, but there are many cases when it is clearly the wrong thing to do. In the end, it is an individual decision that each person should make with the help of their doctors and other healthcare professionals. But patients should be aware that many chronic medical conditions, such as dementia and COPD, negatively affect their chance of surviving an in-hospital cardiac arrest, and patients should know what they are getting into. Complications such as kidney damage, liver damage, low blood pressure, and mental status changes also worsen your chances of surviving. Increasing age, as you might imagine, does, too. This is not the only thing to consider when deciding or updating your code status, but you cannot make an informed decision without this knowledge.
4. Understand the Risks of Resuscitation: The risks? Wait, I thought resuscitation was good, that it was supposed to save lives. Sure, it is and it does…sometimes. But all medical treatments have risks or side effects associated with them. It’s the inherent nature of the practice of medicine.
Long term, patients can end up with poor neurologic function, dependent on ventilators which breathe for them and which they have no hope of coming 
off of because of their previous lung disease or other complicating medical issues. Even if not dependent on a ventilator, they may require feeding through tubes introduced into their gut because they aren’t able to swallow. They can be bedbound and develop ulcers on the dependent areas of their bodies. These ulcers can become infected. They are often tied down to keep them from pulling at their numerous tubes due to their delirium. They get urinary tract infections because they require a foley catheter or are incontinent.
Many families feel trapped after their loved one has “beaten the odds” and survived a cardiac arrest just to be in a situation similar to the one described above. It is important to mention that it’s never too late to withdraw care in these situations. This is not equivalent to causing death, as the underlying illness is doing that. It is simply removing the artificial means of keeping the patient alive.
Death is an inevitability. Modern medicine is amazing in that we can often treat the complications of terminal disease. But we cannot change the terminal nature of those diseases. And when the treatment starts to cause more harm than good, we need to take a step back and re-evaluate our goals. One of the most amazing things about medicine, one of the reasons I love practicing, is the experience we gain over the years. We can counsel a patient who may be experiencing illness for the first time on what to expect – because we’ve seen it. No, we can’t tell them the day and the hour of their death, but we can give them an idea of how things are going to go, so they can decide on their own terms when enough is enough.
And it’s different for every person. We know that. And we respect that.
5. Fill out a Five Wishes or MOST Form and Talk About Your Wishes with Your Loved Ones: Close your eyes and picture how you imagine your death. 
Is it surrounded by family members in your own home? Is it on a tropical island with a Mai Tai in your hand? Is your pastor at your bedside saying a prayer over you? Chances are, it’s not tied to a bed in a cold hospital room, sedated and unaware.
Of course, many people don’t get to control how they die. They die in car accidents or of a heart attack in the middle of the night. They aren’t even aware that life is passing from them during their final moments. But if you are blessed enough to have time to ponder your mortality and the ability to dictate the terms of your death –wouldn’t you want to take advantage of 
that? A Five Wishes (https://agingwithdignity.org/docs/default-source/default-document-library/product-samples/fwsample.pdf?sfvrsn=2) or MOST form (http://www.polst.org/wp-content/uploads/2012/12/NC-MOST-Form.pdf) tells those who will care for you and who will make 
decisions for you what those decisions should be. Gift your family with your wishes so they know how to take care of you in the way you envision.
Too often, caregivers are placed in the impossible situation of guessing what their loved ones would have wanted. Though they come from a well meaning place, they usually do everything to keep their family member alive, even if it prolongs a quality of life inconsistent with who they were in life (and one they would never want for themselves). Take the time to speak with your family and document your wishes – and you just may end up with that Mai Tai, after all.
The end of life is a part of life. It should be part of our legacy, not a desperate last-ditch effort to escape the inescapable. Talk to your family and your doctor now and on a regular basis as your condition changes. Take control of your legacy.
***
The information for this article was obtained from review of the articles below and conversations with Alisha Benner, MD, who has conducted research regarding end-of-life care.
http://www.cnn.com/2013/07/10/health/cpr-lifesaving-stats/
http://www.theguardian.com/society/2012/feb/08/how-doctors-choose-die
http://archinte.jamanetwork.com/article.aspx?articleid=1735894
http://www.hhnmag.com/articles/3656-health-care-costs-and-choices-in-the-last-years-of-life
http://www.cbsnews.com/news/the-cost-of-dying-end-of-life-care/
http://www.medscape.com/viewarticle/853541
K.V. Scruggs 
Kristi, this hits so close to home having just experienced so much of this in the months and years preceding my moms passing. It was extremely difficult to make decisions to get my siblings and even niece on board with those decisions. Even my moms primary care physician was guilty of avoiding difficult but honest conversations about expectations and options. This article should be posted at every primary care office and should be handed out upon every hospital admission as the doorway to honest conversations. Kudos for another relevant, informative must read!
Sandra Hodgson, RN, BSN Baxter Healthcare Anesthesia & Critical Care 919-274-6992
Sent from my Baxter mobile device
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Thank you so much, Sandra! I agree, it is extremely difficult to be on the family side of things as a healthcare worker. I think it’s so important to talk about these issues, and often, so that it’s not a total shock when the discussion becomes personally relevant.
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Well said. There must be conversation to occur as most patients do not read what they are handed , let alone understand.
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Kristi, your article is excellent, as are the comments and replies from your readers.
For similar reasons, since 1979, I have usually chosen to speak about the JCAHO “Patients’ Bill of Rights”. Even today, though posted, very few hospital staff, or patients have been aware of its existence, and usefulness in getting a handle on the complex issues of care and ethics involved. I would hope we will eventually have a nook in each doctor’s office, school, and public library, that is devoted to the important topics relevant to health care.
Our hospital was sent to Vietnam as a unit in 1968. At the 27th Surgical Hospital, we were one of three hospitals specially set up to take care of not only our American/allied casualties, but also both north and south Vietnamese military casualties. A special area was also provided for the vietnamese families to be near their wounded family members as was the vietnamese custom.
We were very pleased to see these families interact with their loved ones and talk to each other about what was happening during their stay. Would that more american families would emulate and expand on this vietnamese custom, and talk around the dinner table of life, easily, and often, with each other, and their friends, about medical issues, their own goals, and desires for medical care, and their other difficult life experiences.
As Ever, Orin Keplinger, MT since 1962 E) orink@t6b.com
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My wife of 58 years passed after 5 horrible years of dementia. She died of pneumonia in a nursing home where she had been for 5 months. I had kept her at home for 4.5 years. We both had written instructions to make no heroic efforts to keep us alive but dementia and Alzheimer’s can drag on for years with a known outcome. I have made it clear to my only daughter that if I am ever hospitalized that no heroic measures should be made to just keep me alive. I have completed the proper legal documents to this effect. Discuss death & how to deal with it with your family now.
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My one question is, do YOU have a DNAR order? Very informative.
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Thanks for reading! Without getting too personal, I will say that those closest to me know my wishes.
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It needs to be in writing.
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Yes, Gina, I missed this comment earlier. It is in writing!
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thank you for having the courage to call out the Drs that prefer to take the softer route , “do everything we can….” without the explanation of what is a realistic expectation.
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This was a good read, but I wish you would have addressed the ugly and futile nature of advanced directives. People also don’t understand that once they are deemed unable to make their own decisions their families may challenge the wishes they stated in their advance directive. I believe they think they are challenging their loved one’s advance directive out of love, but that it is actually out of selfishness. It irritates me to know that even though I (hypothetically) declare and have witnessed my desire to not be resuscitated, my family can override my wishes should I have an altered mental status prior to qualifying for such an intervention. Just because something is legal doesn’t mean it is ethical. Perhaps this was part of the broken system you referred to?
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Technically, the legal document should stand (from a medical ethics standpoint), but you are correct that many times conflicted family members can make it difficult to follow the advanced directive if they are not on board. That’s why it’s so important to have these conversations with your family so they know without a shadow of a doubt what your wishes are.
It’s a really beautiful thing when it all comes together like it should. “Dad has always said he would never want to live if x, y, z.”
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Unfortunately in NC, unless specifically noted in the advance directive that their wishes cannot be changed by the HCPOA (health care power of attorney), a person’s directives can be overturned by their HCPOA once they becomes incapacitated for any reason. Because of this it is all the more important to discuss advance directives clearly with family and the designated HCPOA(s) so that a person’s wishes are respected. It is also critical to carefully review advance directive paperwork with a knowledgeable person able to understand and explain the language clearly as these documents are lengthy and complex. Newer versions of this document specify if a person desires to allow their wishes to be overturned but older versions are still in use in many medical settings.
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I am a physician as well, and I DO have it in writing. I also have a little clause at the end of it that states “these are my wishes and are to be carried out expressly as I have indicated. My PoA is not to question the intent or alter these wishes based on their own interpretation of my circumstances”.
My treating physician can take that to the hospital ethics committee to make sure I get the treatment I want (which does NOT include prolonged nutrition/hydration etc…)
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This is an outstanding post! So timely, well-written and thought-provoking. It sheds light on a frequently occurring huge system failure in the US; how we handle acute medical emergencies, terminal illness, and the end of life. As an RN I saw it done well, and I bore witness to it NOT done well far too many times, like you K.V. The illness and dying ‘experience’ could have been so greatly enriched had these difficult conversations occurred and the decisions made were truly in the best interest of the patient/his or her wishes. Sandra, I’m sorry for your loss. Agreed that your being a nurse no doubt made it even more challenging… Change will require boldness, like that displayed by my truly bold PT colleague.. She shared with me TODAY how difficult it was to watch her good friend become so ill with cancer, and ‘fight’ with every ounce of strength she had to the very end, to her physical and mental detriment. She stated emphatically, “I don’t want my family to remember me as a quitter.” YES, death IS an inevitability S.V. and we NEED to do better.
So here’s the good news: There are many people like us and my esteemed Hospice/Palliative Care Nurse Coach colleague, who are increasingly frustrated with the current paradigm. She recently went back to grad school in the hopes of gaining insight so that she can become part of the change. I applaud her efforts, as I do yours Kristi! Here’s what she e-mailed me recently.
“These are some of the questions that drive my focus of study on emerging models for more wise and compassionate care at the end of life.”
What stories are we changing?
The story that the goal of our health care system is for people not to die.
That death is to be feared.
That death shouldn’t happen – if it does, it’s a failure.
What are the newer models of a wise & sane death in our culture?
What are the emerging models for more conscious aging and end of life – drawing from both wisdom traditions and newer innovations?
How are we self-correcting the trajectory of the biomedical model that has fought death since end of WWII?” These are provocative questions. Let’s please continue this important dialogue together.
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Very interesting and informative. Take away for me is unless you are young ( under 30), and it’s an acute condition, then resuscitation should not be attempted. Maybe someone should hold our entertainment and media outlets responsible for painting an inaccurate picture of the outcome of resuscitation. Where are the medical advisors in these situations? . The general public is having this important conversation with TV doctors since their physician is not doing their due diligence to educate their patients.
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We need to get the conversation started, there’s no question. I hope that patients will read articles like this one and approach their doctors, as well. There are many deterrents to initiating the conversation as a primary care physician, not the least of which is time (or lack of it). I am happy to say that time spent having this conversation is now reimbursed by Medicare!
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I think that may be going a bit to far. A better take away would be that in general if its a question of IF your disease will kill you – resuscitate. If it’s a question of WHEN your disease will kill you – don’t resuscitate. I’ve seen people successfully resuscitated in their 60’s and have gone on to live good lives for decades. I’ve also seen repeated painful CPR preformed on children with terminal conditions and less than a week to live, because the parents couldn’t let go.
CPR really can be ugly. My department just recently had a speaker come in and give a lecture on tips for distinguishing resuscitation injuries from child abuse. With broken ribs, injuries to the neck and throat from intubation (sticking a tube into the throat to allow artificial breathing), burns from the defibrillator, and all the holes punched in various places to try and administer medications, even for a trained physician it can be really hard to tell the two apart.
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my dad and stepmom did not sign a dnr when he went into the hospital for a simple back surgery. we have experienced this scenario when my dad was put onto a vent and died a slow death after having a heart attack while still recuperating. i do not think he ever really “woke” back up and i never thought he would, tho i prayed over it many times.
do you want your loved one on a vent artificially breathing for them, at the mercy of others, just waiting for death to overtake them at some little facility they farm you out to when there is little hope left? sometimes infections set in, bed sores and many other kinds of suffering happen over time. i believe, and want, death to take me in its natural form when it is my time. i need to get mine signed asap. i am guilty of not having one.
as a healthcare person, i will do my best to provide dignity for your loved one and do cpr as i did this past weekend, but seriously think about this. and if you or your loved one signs a dnr, keep a copy and have one on file at the hospitals and facilities they go to. if there is nothing signed and the facility cannot actually locate and see it, they have to continue to try and resuscitate.
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This was well written and spot on. Having all the information was key for my family as we planned for my grandfather’s passing. We were able to give him the beautiful gift of “letting him go” and he was grateful for it. He told us all so before he passed. We were very close and I miss him everday, but I’m at peace knowing that he is at peace.
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Thank you for sharing!
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My family has had excellent help from Hospice and palliative care. Sometimes it’s difficult to know whether it’s the right timing, but I would hope that it would be suggested every time the situation arises. Our parish nurse in my Episcopal church has been helping parishioners with advance directives and the necessary talk with family members, and I value that highly, too. It shouldn’t always be the physician who has this responsibility; it’s better if the family gets together to talk about what each person wants, far in advance. Then put conclusions in a legal document.
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I am an RN in an acute care facility. Almost my very first question on admission for everyone is about code status. I have NEVER tried to sway an opinion of pt and/or family about their decision but I feel a responsibility to let them know what they are saying yes to when agreeing they want to be a “full code”.
Most people do not have a clue that there is a strong likelihood their breastbone will be broken when receiving effective CPR and how painful that recovery process is. If you have to add to this scenario the patient is elderly and/or frail & may already have other illnesses; there is a strong possibility this pain and suffering will be for naught. They won’t be able to deal with their pain without heavy pain medications that will a) make them a candidate for intubation, if this has not already been done in the code and b) the pain medication may slow their Healing time, & c) there will be no interaction with those around them because they are heavily sedated. I’m not even going to mention the possible neurological ramifications as it has already been covered.
Most people are truly horrified when they realize the consequences of this decision.
Everyone has the right to understand all of the facts before they make that decision for themselves or their loved one. If they are well informed, then they can make that right decision for themselves, whatever it might be.
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Excellent points. Sometimes the biggest challenge is laying all that information out there without sounding like you’re trying to influence their decision – because, frankly, it can sound pretty horrifying. And rightly so.
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Thank you for this article, it was very helpful to me from a different perspective. I was put in the horrible position of having to perform CPR on my dad on the golf course while waiting for help to arrive, and I’ve always wondered if I could have done a better job, unfortunately, while the paramedics were able to get his heart going again, he was without oxygen too long and his brain did not recover. We were in the U.S. and able to bring him home to Canada so the rest of the family could say goodbye, and then we chose to let him go by taking him off support – fortunately our family was able to agree on this. Your article helps reinforce what others have told me about the odds of CPR being successful. As you mentioned, the Hollywood version is misleading, so I thank you again for this information. After 3 years, it’s time to let go of the guilt and accept the facts.
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when my time comes just let me go peacefully… no drama-no guilt- just remember how much I loved you always
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As a chaplain and clinical pastoral educator, I thought this was an excellent and important article! My only argument is with the phrase “withdraw care” in reference to discontinuing futile treatments. We can stop aggressive and often harmful interventions while continuing to provide medical, emotional, and spiritual CARE. The rest of the article reflects that sentiment, but words matter and “withdrawing care” is what many fear will happen if we stop specific treatments.
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That’s a great point. I had never considered how that term might be perceived from a patient perspective, as it is a phrase that is commonly used in the medical arena. But you’re exactly right, we never withdraw care. We just change its focus.
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I have heard that some doctors are using the term AND (allow natural death), instead of DNR, because it has a more positive connotation…I think similar to the view that ‘withdraw care’ is a rather negative term that implies giving up on people.
Loved the article and will share, thanks!
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K.V.,
I was an ICU/CCU LPN and later a PACU RN. I dealt with patients and families with and without DNR orders often.
I had a motor vehicle accident and was admitted to the ICU with a C-5/6 Spinal Cord Injury. My husband, Earl, refused to sign a DNR for me. The neurosurgeon told Earl I would be brain-damaged, bedridden and ventilator dependent. Then he offered to let me die comfortably. I overheard the conversation and was off the ventilator 48 hours later.
Earl asked him to transfer me and he refused. Earl looked for a rehab facility and within a few days had me transferred to Shepherd Center in Atlanta.
Today, 25 years later, I am a C-5/6 with good function. I am in my right mind, use a power wheelchair and I’m not on a ventilator.
I lead Bible studies, women’s groups, teach Sunday school, facilitate other small groups and speak at conferences. I also teach people how to speak to large and small groups. I have a devotional blog and I am writing a book.
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What an inspiring story! Advanced care planning is an extremely personal decision. No one can make those decisions for you and your family, doctors can only offer advice based on their experiences. In the end, it’s your decision. The most important thing is that patients make that decision so someone else doesn’t have to do it for them. It sounds like your husband fought hard for you and won.
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That’s EXACTLY right. People are afraid if you sign that paper, that you wash your hands of the patient. And while I agree these conversations are critical, I believe that are often one sided, focused on what we won’t do. Unless you tell me what you WILL do for me, sure, I want it all! My father died of COPD. Only ONE doctor (in rehab) spoke to him realistically about his prognosis and had an honest conversation about comfort measures. I had to beg his pulmonologist for sublingual morphine, so he could get to the restroom without collapsing. Praise God he died at home going to the restroom in the middle of the night. Oh, what hospice could have done to help Him and my poor mother who slept thru his collapse, thanks to Ambien. She needed the rest. So did my dad.
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You might want to clarify “ACLS” in the article, for those who don’t know what it means.
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ACLS = Advanced Cardiac Life Support, but I have tried to use the word “resuscitation” in place of ACLS in this article. Looks like I missed one, but it’s fixed now. Thanks!
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This is a great read. Very informative and takes practitioners to the edge of their comfort levels- just enough to induce reflection upon our own actions.
Thank you!
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Thank you for summarising this important subject that so many people fear to talk about. As a non-healthcare family member, I am guilty of having that conversation with an elderly family member that goes “what do you want me to do if you collapse”. When really I wanted to ask do you want resuscitation attempts to be made if I find you have stopped breathing or you have a heart attack. I regret completely the consequences of following the response to call the paramedics.
Perhaps, there was scope in your piece, for you to add some of the other realities of the current default position of chest compressions in community practice…ie when paramedics are called via 911 (999 here in the UK). An absolutely abhorrent intervention for anyone frail or elderly. The whole process of what happens when someone pushes down on the chest and ribs crush, chest bones break, In hindsight no family would want their fragile loved one to be treated in this manner which causes such catastrophic physical damage in the futile attempt of ‘saving’ them.
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The United States does a woefully inadequate job of preparing practitioners to care for patients and families dealing with end of life issues. As bot a nurse and a counselor with mental health, grief and hospice experience I urge all caregivers to take some courses on death and dying and get some therapy for themselves to address their own issues surrounding grief. When you become more comfortable and less afraid of your own experiences you become more able to help others.
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Thank you for posting this. It is a real eye-opener and a great conversation starter. I think the health care community is often at odds with talking about death in general. The idea that we have to prolong life no matter what, even if the quality of it is poor, is still entrenched. My father suffered from Parkinson’s and had a number of mini strokes. His Parkinson’s doctor refused to come out and say “I think he has such and such time left” or anything close. It was all about keeping him alive. Near the end, my mother was forced to place him in a nursing home and while it was not a bad place, she agonized over it because he was clearly unhappy. She went to his primary care doctor who had known him for years. He was the first person to be totally straight with her and say “Larry is in his last days. Call hospice and take him home. I’ll sign all the paperwork.” She went to get him at the nursing home and they told her she couldn’t do that. She took him home anyway and he spent his last three weeks at home surrounded by those he loved and died there peacefully. My mother went to his Parkinson’s doctor’s office later and he refused to see her. It made me very angry that he acted in such a cowardly way. I know most health care professionals/doctors are fantastic and they get little praise. They are our unsung heroes. But there has to be a better way to handle these sensitive issues.
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I am a Hospice RN and I see too many drs who need more education in palliative and hospice care as well as the death and dying process. There have been oncology NPs who have told us they will give the chemo pills until the pt can no longer swallow! They don’t give the pts all their options before they start all these treatments. They immediately go for radiation and chemo (I am generalizing but almost all the oncologists I’ve dealt with are like this). Before I was a nurse my mom had lung cancer with mets to the brain. I was the realistic one who spoke with the dr about all these treatments and what they would really do for her. I wanted quality time with my mom not quantity. I fill out POLST forms with my pts and I explain to them what full code means as well as what CPR entails and give survival statistics. Yes it is their choice but most don’t realize the survival rate for a healthy person with an acute disease in the hospital is pretty small let alone someone with a terminal illness outside the hospital.
Thank you for starting this conversation.
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Thank you so much for writing this. I’m not sure if this is a page directed at mostly healthcare professionals or not, but I hope more of the lay-public read it.
I think biases for and against being “realistic” about death and dying are both a generational and a specialty issue. In general, the intensivist is going to have a much different view than the surgical oncologist. Providers in their 40’s might be more comfortable talking openly about it with families than those in their 60’s. My family recently went through a prolonged ICU admission and death. Without getting into specifics, my family trusted an older surgeon who kept offering what I considered to be “band-aids” that would never address the much larger issue. I’m an NP with a strong critical care background. The intensivist and I were very realistic about the futility of the situation, but family members chose to listen to the much older and unrealistic surgeon.
I guess my point is that we need to speak with one voice when addressing these core issues. Who even knows if that’s possible? It’s a culture change, and we have come a long way. But clearly not far enough.
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Thank you for your thoughtful comments. My hope with all of my healthcare blogs is that healthcare folk see it and share it widely with friends and family, because I mainly write for a lay audience, a sort of “what I wish my patients knew” approach. You are so right, one of the biggest challenges is differing opinions in this age of having a specialist for every ailment. When we learn to communicate and behave as a unit, we will solve a lot of the problems in our current healthcare system.
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Reblogged this on Invisible Mikey.
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As a CNA, Caregiver, and Medical POA for relatives, one tradegy I have witnessed in the medical profession is doctor’s lack of ability to be honest with patients in direct terms. The notion of shielding the patient from the truth causes more harm than not. One thing doctors have to understand…they are not the patient and just because they wouldn’t want to know the truth doesn’t mean the patient doesn’t. Withholding the truth inadequately prepares the patient and family from the inevitable that they never saw coming. This I speak from experience! Thanks for this post.
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And there are those times when the doctors are as straightforward as they can possibly be, the nurses reiterate that truth, and the family member(s) is feeling a sense of guilt over what is transpiring, and refuses to accept the reality of the situation. True, there are doctors who make you cringe when you hear them discussing end of life issues….but I do think that is it a social thing as well. It is also about how we view death in our country, and specifically in the medical field. Never give up seems to have been the word, but it is changing slowly.
Many years ago, in 1988, my mother passed away at the age of 49. My sister and I had the good sense to realize that she, herself had decided the fight was over. We knew that even if we avoided death at that point, it wasn’t going to fix the underlying health issues. There is not a single code blue situation I have been in over the last 25 years that has made me consider that I made the wrong decision for my mother. I do believe we let her speak for herself, even though we never really discussed it outright. I knew that she knew she was facing discharge from the hospital into a nursing home, and that bilateral AKA or BKA amputations were in the near future for her. I knew she did not want this.
I knew that she did not want to be a burden on me, even though I made it clear that I would do whatever I had to do to take care of her at home. I do have to say that at that time, the physician was very direct. I thought her a bitch, without a heart, but knew what she said was the truth. My mother was at the point of no return, and coding her would do nothing good. To this day, I remain comfortable with not having subjected my mother’s frail body to the violence that can be the case with CPR.
Additionally, both my uncle and aunt passed away with two weeks of each other just recently. I applaud my cousins for not prolonging the agony in either case. My uncle had Alzheimers for a while, my aunt and cousins taking care of him. He fell, had to be placed in a nursing home, contracted pneumonia, and succumbed to that. He waited until my aunt left the room before leaving. Four days after his memorial service, my aunt had what appeared to be a seizure. It was later determined that she had a heart attack as well, and there was either a mass or a bleed on her CT. The following morning, she was completely unresponsive, and another CT showed a major shift in her brain. God Bless them, my cousins told the doctors they were not sugar coaters, so give it to them straight. Shortly thereafter, they agreed to withdraw life support, and my aunt, their mother, passed peacefully. I respect them immensely for allowing both of their parents to die with dignity.
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My experiences as a Caregiver wasn’t yours.
You said you never discussed with your mother her wishes…so how could you possibly affirm confirmation that you knew what she would or would not want? Death and Dying is about the individual experiencing it, and not the ones they leave behind! Everyone shares from their own personal experiences, but until you personally experience the process of dying for yourself, You could not possibly began to know what one may want.
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Thank you for this article. I wish I could hand it to the PA at my dad’s cardiologist’s office, who told me twice that if I didn’t have a certain procedure done that I was euthanizing him.
He was in the advanced stages of dementia at the time and there was no purpose in prolonging his life–he was 92 at the time.
His advanced directive was very clear, and specified cognitive decline as one of the conditions he did not want to prolong. This cardiologist made it is difficult as possible for me to make this decision at a time when I knew my dad didn’t have long to live.
He was on hospice, his PCP didn’t want the procedure to be done, and my siblings and I were in agreement that his wishes should be honored.
At one of the most difficult times of my life, this doctor and her team added unnecessary and cruel hoops for us to go through to satisfy themselves without regard for what was best for my sweet dad.
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In September of 2015 I underwent surgery for a total knee replacement. Two days later I went into cardiac arrest (I do have heart problems…i.e. triple bypass, stents twice, but I had the OK from my cardiologist to have the procedure). I understand that I was given CPR, was resuscitated and was in a coma for two days. I have absolutely no recollection of the week before my knee surgery nor my two weeks in the hospital after resuscitation. I still have a little problem with short term memory. Is this common?
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The brain is an organ which is highly dependent on oxygen to function correctly, and during cardiac arrest your heart is not pumping blood (i.e. oxygen) to your brain. We see a range of different effects of that on patients long term. Your experience is likely not uncommon.
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Thank you for writing this. I agree completely. I write a lot about this too, its hard to be at the bedside watching families make these choices you aren’t sure are in their family member’s best interest because of lack of understanding or just overwhelming hope. The public needs to be better educated on the likely realistic outcomes and what they are signing up for when they ask us to resuscitate people who are so chronically ill or elderly or beyond our intervention. Most importantly though I think we all need to do our part to help others have an honest and open conversation about death and how we all want to die and goals of care at end of life. Thank you for beginning that conversation for many here.
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After 36 years as a RN,,26 of those years in ICU..I know there are things worse than death.I have been witness to the suffering and ways to postpone the inevitable.I have been with hundreds of patients who died.If there is a way to peacefully leave this world..that would be the best choice.We were able to bring our Mom home to die which was her wish.Our father , unfortunately was resuscitated even with a DNR order in the hospital…Sometimes I feel I failed him because we didn’t get him home.
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Dear KV, I think you should look into giving a TED talk ! You certainly have the facts, experience a compassion to pull it off. From a critical care nurse who retired after 40+ years in this business.
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A TED talk would be an excellent idea.
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I agree. The author should ABSOLUTELY do a TED talk.
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Yes! Please consider presenting this information in a TED talk. Much needed.
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One thing that we wish people would talk about more is DNR’s for childbirth. More often than not, things go fine. However babies are often resuscitated after tramatic births, APGARs of zero, and the like and the quality of life they and their families have are questionable at best with bankruptcies and hundreds of thousands of dollars spent later.
Our doctor (nor the doctors of anyone we’ve talked with) ever had a conversation during the pregnancy along the lines of, “If something goes wrong, what should we do?” A number of families we know have had children, “rescued,” during birth where the results have left families in tatters. It’s a conversation that must take place.
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I worked as a hospice nurse for years and saw many things about death and dying. Hope and despair, and realistic vs. Unrealistic scenarios. The first thing I talked to my patient’s families was about CPR; what REALLY happens when a person is coded. You touched on this, but many people still imagine a sterile scene where there are a few chest compressions, one or two breaths, and, miraculously, the patient is ok! It is, unfortunately, not like that (except on tv)! Try watching CPR on frail, sick, or elderly people; ribs cracking or breaking, and IV lines started on people who are not alive! I also think a HUGE part of the problem is how physicians seem to feel about death; I say “seem” because I can only go by their actions! Many of my patients had physicians who “seemed” to feel that once the patient went on hospice, that they, the physicians, had let the patient and family down, and they had “failed” and the patient should keep trying everything, no matter quality of life. Death IS part of life and everyone should have the right to make what decisions they think are right for them! Families and physicians, please honor your loved ones and your patients by being honest and allowing them to die as they want, as much as possible; it is called respect and dignity!
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I can only speak for myself, but I consider it a success when I’m able to appropriately transition a patient to hospice, not a failure. I have been blessed to work closely with an outstanding palliative care/hospice group at my hospital, and I always know my patients are going to be in great hands when they take over.
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I agree
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As an RN in Acute Care, and also Correctional Healthcare, and a strong believer in the sanctity of human life at all stages, I agree almost completely with this article. Hospice, at the proper time, is a successful part of healthcare. I do want to give some food for thought to those who think that short-cutting the natural life process, by initiating death, is a part of healthcare. I realize that my statement could spark a holy war, but some things truly are holy, and need to be defended. We have the technology to allow people to die with dignity, to deal with the pain, and to make the final transition a peaceful and positive one, as part of the natural end of their life. “Assisting” with the taking of human life is crossing a line, and we should all think very carefully about whether mankind should cross that line.
Death is something that we will all experience, as the author highlights, and yet we spend our entire lives trying not to think about. We came from somewhere. We are going somewhere. Everyone needs to think about that, and know that when the natural time comes “to go”, that we go in peace.
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“…withdraw care.” Doesn’t that sound as though no care will be provided? How about “transitioning to comfort measures” or some such phrase that would indicate we will continue to provide care?
Still, you have written an excellent article I will use when talking to patients and their families.
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Terrific post. Thanks for writing. You are obviously interested in Right Care. Take a look at the Lown Institute Right Care Alliance. We are always looking for doctors such as yourself. http://rightcarealliance.org/
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I’ve seen this go both ways. In Haiti we have the luxury of being extremely under privileged medically when it comes to this. Either the CPR works or it doesn’t. With only about 10 vent beds, 4 ct scan machines, 1 MRI and a handful of defibrillators in a country of over 10 million people, EMS can’t (shouldn’t) even intubate someone here unless we have a confirmed receiving facility. So I believe people get to die better, many times because of that. The ones who do make it to a hospital have less chance to survive than in USA, but I’ve been really surprised at some of the really incredible success stories where people got a second chance after being completely dead. Here, you either make it or you don’t. Not much of the dragging it out to the bitter bed sore uti undignified inevitable end.
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’m 57 years old and in excellent health, and yet my husband was not pleased when I told him, “If anything happens to me, do NOT resuscitate me. Let me pass in peace.”
I’ve been at the bedside of many elderly people as they pass on, and the hardest (and best) thing to do is NOTHING. Manage their pain, provide a peaceful environment, surround them with loving thoughts, keep the room “positive” (focus on gratitude and joy), but just let them be.
Why does society struggle so with this concept of a peaceful passing?
I’d like to live another 20-30 years, but when my time comes, I hope those around me will let me go with no medical intervention. And yes, I have those documents in writing.
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Things get even more complicated when there is a split jury of siblings, one of my sisters still thinks we should have done EVERYTHING possible to extend my father’s life. She will feel guilt for the rest of her life, for not opposing the death with dignity choice more forcefully.
I’ll go one step further and say I should be allowed to end my life with a physician’s assistance if I so choose, when it comes to suffering we treat our pets better than we treat humans.
http://www.theatlantic.com/video/index/400409/one-womans-fight-to-die/
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so cool
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Thank you for this very important and very informative article. A must read for everyone. If we are prepared for something unforeseen to happen to (me, us) then decisions made in a crisis will be so much easier for all involved. Especially for the loved ones who then have to take care of us, make decisions about our care when we cannot.
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I would beg to differ with your statement that “they aren’t even aware ” that life is passing. As a person who has experienced a very real, and, well-remembered out of body experience, during a serious complication of childbirth, in an acute care setting, I can assure you that “they” most certainly ARE aware of their oncoming “death”. In fact, I would admit to an increased awareness of each detail of the surroundings. Without suffering, I might add.
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I see you got no reply from the author. That and the fact that she considered it “too personal” to state publicly whether she had a DNR herself, has me questioning her motives. And diminishes her credibility in my eyes.
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I’m sorry you feel that way. I approved the comment above and let it stand on its own merit. I didn’t realize it required a response.
I do not wish to discuss my personal health on the internet and that is my right as a patient.
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My ex-husband’s father was in a hospice care home, and insisted on going home. Although his dad was unable to handle any of his ADLs on his own (required toileting care, etc), his son took him home. The next three weeks were agony. Hospice care came in once a day, his elderly wife was unable to do much more to help than cook and be present, and she was very distraught. She and her husband had done EVERYTHING together in life EXCEPT discuss their wishes in the event of death or incapacitation. So the son, who had medical power of attorney, had to handle everything from decision making to butt wiping. There was no joy in bringing dad home. The experience was so traumatic, in fact, that mom and son couldn’t even face having a memorial service. Dad was buried, but the pain was not. So, so sad.
All or most of this emotional suffering and focus on the negative could have been avoided if my ex-in laws had talked about death, and shared their wishes, with each other and with their son. But both of these wonderful folks were afraid of death. Even though they had gracefully handled the death of a son and other loved ones, they refused to discuss the inevitability of their own.
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I am a Registered Respiratory Therapist. I have worked in the hospital setting, every department, for 20 years, Long Term Acute Care (LTAC) for 6 years and for the last 5 years I have been in a SNF where my wife opened a 12 bed trach/vent dependent unit.
The downward progressions of patients to lower levels of care speaks volumes in itself.
Within each place of healthcare we get the impression that the discharge planner, Doctor, or nurse or someone has given the patient’s family unrealistic expectations.
LTAC’s began around 1996. In 2007 the Center for Medicare/Medicaid Services did a 10 year study on the success of LTAC’s nation wide.
Their findings were that if a patient who left a short stay facility (hospital) and came to an LTAC trached and ventilated, their survival rate was only 30% at best.
The patient’s family can’t seem to understand why their loved one is not getting better. Although some do
have good outcomes, the majority do not.
I have never worked at any health care facility where the staff hasn’t tried to do everything they can to revive a patient regardless, sometimes, of their code status.
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Can’t agree more with Mr. Smith on the Doctors not explaining the out come of (LTAC) patients. I went through this with my mother….
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As a paramedic, even after the years I have put in, I am still somewhat astounded at the lack of knowledge and education provided to people, especially seniors, about end of life decisions. I have picked up people who are 90 years old and aren’t even sure they have any paperwork about what they want done?! Whether it’s the family or doctor that dropped the ball, it got dropped, regardless. It seems this should be a standard of care addressed at doctor visits after a certain age, regardless of how healthy they are or aren’t. I have worked so many elderly patients while wondering, in the back of my mind, what more do you want from these people?? Now that we have a mechanical compressor, it is even more violent than it has been in the past-and we are running into more ROSC’s because of how effectively it is doing CPR for us. It saves us fatigue, then sets up the family for thinking they will be “fine”. If I could do medicine like they do on TV, my job would be SO much less work! Apparently, I should also walk around hospitals more carrying my bags. It’s hard to know how exactly to educate the family; if they accompany parents to the doctor, that would be one situation, but otherwise, I guess we reach people by sharing blogs like this, and hoping people take the time to read. As my parents age, I need to be on top of them to have those things in place. Do you think there are better ways to educate the public? It can be so sticky on scene, when words are twisted and suddenly you are accused of not wanting to help, or wanting the patient to die, etc etc. And, to be honest, not all paramedics have tact as their strongest trait.
The most touching calls I have been on are those where family states over and over, “they want nothing done,” or “this is how they wanted to die.” I still remember a call for a gentleman who was in his bed w/ a HR of about 20, still breathing a bit, and family said that he didn’t want anything done, and this is how he wanted to die(they obviously had legal paperwork present). How beautiful to ACTUALLY die in the comfort of your own home and surrounded by your loved ones. It was also very strange to leave a person not quite dead, but on the cusp. It goes against our training, but is so much more humane. I don’t know exactly how to get the information out there more thoroughly, but, as you said, it needs to be more clear and transparent. It’s hard when, for lack of a better term, people get so “butt hurt” over anything contradictory to what they think, to make it clear what you are saying. Thank you for your blog, appreciate it.
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Thank you for your comments. I agree, wouldn’t it be great if this conversation were a part of all healthcare maintenance visits after a certain age? Then it would be expected and patients wouldn’t feel caught off-guard or defensive about why the topic was being brought up.
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Health care workers and doctors should start using the term “allow natural death” (AND) instead of “do not resuscitate “(DNR). We all understand that!
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[…] Source: The Dirty Secret about CPR in the Hospital (That Doctors Desperately Want You to Know) […]
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Reblogged this on They don't cry and commented:
Here’s an excellent, thoughtful post about the dilemma posed by resuscitation, and what people don’t understand about it. It’s not quite the same issue as neonatal resuscitation for extremely premature babies, but it’s still a very good read.
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I enjoyed your article immensely. Thank you for spending the time and effort to write this for those not in the healthcare profession. I am an RN and have been in the unfortunate position of discussing care with confused and conflicted familes. The scenarios are endless. The most distressing scenarios involve parents of children involved in traumas or unexpected difficulties with newborn infants. It becomes painfully obvious at those moments that physicians are people too. Some are able to find the words to guide parents/families well. Others are so affected by the heartwrenching situations that it is often difficult for them. Articles such as this one, K.V., are priceless in assisting those on both sides of the story. Thank you again.
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Please check above link. Eye opener for all healthcare professionals
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As a nurse in an Emergency Room I have this conversation as often as possible with as many as I can…it doesn’t matter how old you are or what state your health is in…this conversation is one everybody needs to have with friends and family…life doesn’t always wait till your old and sick to put you in a place of needing to make a tough decision….I am in great health and do what I can to maintain it… I also wear a medical alert necklace stating “Do not resuscitate under any circumstances.” Every time I find myself around new people or new workplace I inform all around me of my wishes so there is no confusion if an event should happen…I have participated in many codes…and in all my years only one or two are up and around…the others while deamed successful were lights on nobody home….I am a firm believer that not all miracles of modern medicine are divinely inspired….and that we do a lot in medicine because we can not because we should.
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Reblogged this on Daring to Dream…… and commented:
Yes, this. 100%.
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Dr. Scruggs, Wonderful article! I’m a PA doing hospitalist medicine in Boston and we struggle with this conversation often. I also think people fail to realize how little dignity their is during a code event and process that if they or their family member doesn’t survive the code, their last moments are surrounded by strangers with their entire body exposed and people yelling commands, rather than a peaceful passing surrounding by family/ friends.
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i read this an watched the video an it enlightened me to the fact that i donot want to be resutated,,i will convey my wishes with my family an let them know its my life an my desision alone not theres thank you
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I thoroughly enjoyed this article and would love to see this become a dinnertime conversation. While my 79 y/o father was saluting his platoon in the ICU, I was busy chasing down a doctor to invoke a DNR. My nine siblings were thankful I had the foresight to do this.
As an admission nurse at a busy sub-acute unit in a nursing home, I often have to ask my new patients to fill out an advance directive as part of their admission packet. Do you want CPR? How about dialysis? Tube feeding? They are usually geriatric, may have some cognitive issues related to age, condition, or both and are uncertain what I’m asking or how to answer. I find it to be a bit uncomfortable and invasive if this topic hasn’t been broached beforehand. Family members are often with them and they are either uncomfortable with the decisions or wholeheartedly onboard.
I was somewhat surprised at the percentage of “successful” resuscitations (guess I was thinking of all those healthy teenagers) and the resulting complications that may accompany said resuscitation but is this something I can/should discuss with my patients or am I pushing the envelope and is this the doctor’s territory?
I would love some printed packet for families to take home, discuss with all parties involved so that informed decisions can be made ahead of time. I want them to understand what their decisions entail w/o seeming to make the decision for them. Any suggestions?
My father died in his sleep two days later. Without pain, without intubation, with dignity.
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Thanks for your comments. I think it’s extremely helpful to have simple and straightforward literature to provide to patients regarding this topic, but it is probably best received in the setting of a palliative care consult/evaluation, at least in the current healthcare climate. I hope that these conversations become more commonplace, to the point that patients are asking for information even before we can offer it to them!
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An excellent and informative read for us lay-people. Thank you for writing this. I will definitely share it.
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