Compassionate, informed advice about healthcare decision making

Archive for the ‘CPR’ Category

You Can’t Get What You Want

Posted by

I changed my mind. Since 1990 I had a question to help people make decisions about end-of-life medical treatments. 3.6 million copies and six editions of my Hard Choices for Loving People book have included this question I am now changing.

One essay in a medical journal convinced me in an instant. I read it and it rang true. Dr. Margaret L Schwarze, et. al. wrote “You Can’t Get What You Want: Innovation for End-of-Life Communication in the Intensive Care Unit.” I just recently found this piece from January 2016.

The question I am changing is used so much by doctors, nurses, chaplains and social workers it is almost reflexive. Say you have a demented 85-year-old patient in a nursing home and the family is having to decide about CPR. After explaining the options and prognosis the doctor may then ask, “What would your mother want?” We in healthcare ask this all the time.

We have been well-meaning all these years. We are trying to get the opinion of a patient who can no longer give an opinion. We are being advocates for patient autonomy through the substituted judgement of a family member. The essay authors see several problems with this question.

Several problems with this question

“First, it encourages the family to reflect on treatments, like life support or comfort care, rather than goals.” I am reminded of the doc who cared for my mother. Her dementia had been advancing for years and then she fell and broke her hip. His question to my sister and me was, “How did your mother feel about her dementia?” In many words we told him she hated it and he said, “Okay, here is what we are going to do.” He never asked what treatment plan she would want. He wanted to know how she felt about her underlying condition.

The essay continues with the flaws in the “want” question. “Second, it can shut down discussion; once the family makes a choice, what else is there to say?” The family of the 85-year-old may respond, “Mom loved life. She wants to live. Do everything to keep her alive.” Does she want to live on a machine for weeks or months? Would she want to live not knowing her family? What about the pain and suffering aggressive medical care can inflict? The “want” question cut off this discussion of the patient’s values.

“Third, want is aspirational and evokes fantasies. When we ask patients or their surrogates what they want, we release the constraints of the decision-making context and allow consideration of possibilities outside the boundaries of clinical reality.” A healthcare professional has perhaps seen hundreds of patients like the one where a family is now making a decision about life-prolonging procedures. The docs and nurses know the almost certain disability and/or death awaiting this patient. The family dreams of wanting mom back to how she was before. It’s not happening no matter what is done in most cases.

So, what do we ask if not “what would your mother want?”

Since the first edition of Hard Choices in 1990 I have included “What does the patient want?” as one of five questions to ask as an aid to making end-of-life decisions. Here is what I am changing it to with the next printing:

  1. What does the patient think about their current and probable future condition? A patient with decision-making capacity can speak for themselves. If they are unable to express an opinion then try to imagine how they would think about the state they find themselves in. If the likely outcome of further life-prolonging procedures would lead to increasing disability and/or greater mental decline, what would they say about that? The purpose of this question is to try and imagine what the patient values most.

 

This is a more open and honest discussion of the patient’s values rather than a yes or no about a particular treatment. The family can inform the medical staff about what the patient felt was important. Hopefully, the staff can draw up a treatment plan that affirms those values and is realistic about what further treatment can and cannot accomplish.

In the summer of 1968, as a college student, I did ministry work on the streets of Newark, New Jersey a year after the city had been engulfed in riots. My mentor, Bill Iverson, encouraged us to follow Socrates and ask people questions instead of trying to preach at them. He had a great saying which applies here.

“Ask people the right question and they will give you the right answer.”

Doctors Choose LESS Treatment When Dying

Posted by

Here is a great article from 3 years ago about physicians choosing less aggressive treatments as they are dying than does the general public.

http://www.wsj.com/articles/SB10001424052970203918304577243321242833962#

Hank

Photo by Online Marketing on Unsplash

Videos of Your Future with Advanced Illness

Posted by

What if every person with advanced illness could see a video of what their future would look like? Say, a video of CPR being administered and its aftermath of a breathing tube forcing air down a patient’s throat? Or an honest movie picturing what advanced dementia looks like?

If patients and families could see such a video, would it make a difference in the medical treatments they might choose or refuse as the disease progresses?

These questions are being answered and these videos are available right now.

A mission of producing realistic videos of advanced illness

Last week, NPR radio talk show host Diane Rehm hosted a program “Making Better End-of-Life Care Decisions.” Two of her guests were Drs. Angelo Volandes and Aretha Delight Davis, both of the Harvard Medical School. They have a mission of producing realistic videos of what advanced illness looks like and actual footage of treatments like feeding tubes and ventilators.

They have started Advance Care Planning Decisions (www.acpdecisions.org) to produce and distribute these videos. Go to their website to see a sample video and read the research.

The bottom line on the research is that when patients and/or their families see videos of actual treatments, they are more likely to refuse the treatment than if a physician just explains what the treatment is like. It is the old a-picture-is-worth-a-thousand-words adage.

The aftermath of some life-prolonging treatments

The Atlantic ran a great article on the whole video project, “How Not to Die” by Jonathan Rauch.

One of the things I like about what I see here is the depiction of the aftermath of some life-prolonging treatments. Take CPR, for example. Successful resuscitation attempts are rare. “Successful” being defined as “the patient did not die.” At best, the procedure is successful only about 15% of the time. What is hidden in the “successful” statistic is that half of those survivors have brain damage following the interruption of the blood flow to the brain. AND, what you see in the video, the patient is highly likely to be hooked up to a ventilator (breathing machine) after being resuscitated.

So the combination low survival rates, the likelihood of brain damage, and increased chance of being tethered to a machine cause many people to pause before telling the medical team to “do everything.” We now have videos to show what all the words have been trying to convey. What a great contribution of Drs. Volandes and Davis!

DNR vs. AND—AND Wins!

Posted by

You know what is curious to me? Why is there STILL so much discussion in the medical community about discussing CPR with patients and families?

CPR has been around for over 50 years. We know many situations where it offers no medical benefit, yet we continue to do research on how to talk to patients and, mostly, their families.

Death-and-death decisions

I know. I am a chaplain and am not a physician who has to face these families daily with such discussions. I do feel for the docs sitting across from distraught and conflicted families who have to make such “life-and-death decisions.” Of course, in many cases, these are really “death-and-death decisions” because. in some cases, we know ahead of time when CPR will not work. So the conversation is really about what is going to be done to the patient as they die knowing that CPR will not save their life.

Thirty-nine years ago JAMA published guidelines on the use of CPR. Under the ethics section (1) we find this:

“The purpose of cardiopulmonary resuscitation is the prevention of sudden, unexpected death. Cardiopulmonary resuscitation is not indicated in certain situations, such as in cases of terminal irreversible illness where death is not unexpected or where prolonged cardiac arrest dictates the futility of resuscitation efforts. Resuscitation in these circumstances may represent a positive violation of the individual’s right to die with dignity.”

Did that memo get out? Well, it did but it got buried under the memos on how to do CPR and the one that said 15% of all hospital patients who receive CPR survive to be discharged. For the general public, the issue got warped by the fact that the CPR success rate on the TV show Rescue 911 was 100%. Nowhere close to reality but convincing enough to the lay person that “maybe we should try it on granny.” As seen on TV.

Terms used to withhold CPR … greatly influence the decision.

Now a new study from the medical publication Critical Care Medicine suggests that the terms used to withhold CPR and information a physician shares with a family member greatly influence the decision. The researchers found that if the physician told a family “most people decline CPR in a situation similar to your mother’s” then most family members declined the procedure. Conversely, if the doc said “most chose CPR” then the majority wanted the procedure. In other words, most people want to feel they are in the majority.

The other interesting finding has to do with how the order to withhold treatment is worded. DNR, for Do Not Resuscitate, has been the norm in most healthcare facilities. It implies withholding a possible life-saving treatment. So, for many, it has a negative connotation. But when no more that 15% of patients, on average, are going to be successfully resuscitated, hardly is the decision between resuscitation and no resuscitation. It is between resuscitation attempts and no resuscitation attempts.

“Allow Natural Death” just sounds so much more gentle

The researchers had the “physician” on a video in the study call the order “Allow Natural Death” (AND). When the order was called DNR, 61% wanted CPR attempted but when it was termed AND, only 49% opted for resuscitation attempts. “Allow Natural Death” just sounds so much more gentle, in my view. The family is not made to feel they are withholding anything but letting the natural course of event move forward.

I was put on to this both from an article in Time Magazine and from Paula Span’s always thoughtful blog in the New York Times, “The New Old Age.” She titled her article “DNR by Another Name.”  Indeed just that subtle change of wording helps families choose a more compassionate death for their dying loved one.

When I started my work as a nursing home chaplain in 1983 we reviewed the charts of all 200 residents under our care. Only 17 had any sort of advance directive or physician’s order regarding end-of-life care. This was a family-owned stand alone long term care facility. With little direction from the outside, the administration and medical director chose the term “No CPR” to indicated how to treat a patient if their heart or breathing stopped. It was so honest because it said exactly what we were not going to do for a dying patient. No illusion about resuscitation implied in the DNR order.

This is where I cut my teeth considering heroic measures. I am so grateful to Pat Smith, RN, Administrator, and Beth Kleb, RN, Director of Nursing, for showing me that compassionate end-of-life care did not have to include CPR. Nurses know this stuff.

1. National Conference on Standards for CPR and Emergency Cardiac Care.  “Standards for Cardiopulmonary Resuscitation (CPR) and Emergency Cardiac Care (ECC)” JAMA, Vol 227, No. 7, Feb. 18, 1974.

 

 

A Peaceful Death . . . Without CPR

Posted by

Who hasn’t heard it yet? The 911 dispatcher in Bakersfield, California begging the retirement home employee to find someone to begin CPR on 87-year-old Lorraine Bayless who had collapsed in the dining room. Apparently the policy at Glenwood Gardens independent living facility is to call the rescue squad and let them care for a stricken resident. Glenwood is not a medical facility but an apartment building with extra services for the elderly. The employee on the phone with the dispatcher very calmly said repeatedly “No, we don’t have anyone here who can begin CPR.”

Much of the commentary I have heard this week condemned the employee and the policy as unethical and uncaring. I am not surprised given the false information out there that CPR saves most of those who suffer a cardiac arrest.

May I offer a few things to consider.

1) CPR is rarely successful. Only 15% of those who have resuscitation attempts in the hospital survive to be discharged. Patients who do not live independently, who have more than one or two medical problems, or have a terminal disease survive in the 0-2% range. In one study of out-of-hospital cardiac arrest only 9.4 percent of those in their 80s and 4.4 percent of those 90 and older survive.

I don’t know what diagnoses this lady had but at 87 many people have several health issues which make them unlikely to survive a CPR attempt.

2) CPR itself has risks of broken ribs and punctured lungs as well as the risk of brain damage. Half of “successfully” resuscitated patients have brain damage ranging from mild memory loss to ending up in a vegetative state. I know of at least one case where a medical facility was sued for “wrongful life” because they “successfully” resuscitated a patient against the patient and family wishes. Evidently they felt the burden of living after resuscitation was much worse than death.

3) Most 87-year-olds wish for a peaceful, quick death like Ms. Bayless had. I say this having spent years as a nursing home, hospice, and hospital chaplain and caring for my parents (along with my brother and sister) as our elders made the journey from independent living, through assisted living, to a nursing home, and finally dying under hospice care. These old, old people’s greatest fear is to become demented, incontinent, wheelchair-bound, and having to live out their days dependent on others. Ms. Bayless was still in independent living. She never had to make that final decline most of us will make.

Mrs. Bayless’s family released a statement after the media frenzy. They wrote:

“It was our beloved mother and grandmother’s wish to die naturally and without any kind of life-prolonging intervention. . . . We understand that the 911 tape of this event has caused concern, but our family knows that mom had full knowledge of the limitations of Glenwood Gardens, and is at peace. We also have no desire, nor is it the nature of our family, to seek legal recourse or try to profit from what is a lesson we can all learn from.”

Sounds like those with most to lose in this situation are quite accepting of the outcome.

CBS radio commentator, Dave Ross, observed that neither the employee nor a resident who also called 911 had any panic in their voice. He said:

“In fact at no time do you hear anyone crying for help or panicking—probably because they all know the policy. Not just the policy at Glenwood, but the policy that applies to us all—which states that at some point—life ends. If you’re lucky, it doesn’t end until you’re well into your 80’s—but it ends. We like to think we can change that by declaring an emergency and rushing to the rescue.

“In fact, one California legislator says she plans to introduce a bill so this never happens again. Unfortunately, I think outlawing natural death may be more than even the state of California can enforce.”

Hank Dunn

Emergency Preparedness

Posted by

“Could you come to ‘labor and delivery’? We’ve had a fetal demise and the family would like a chaplain,” the nurse said. She had paged me at 5:30 AM last Monday. I told her I could be there in a half-hour.

We have a volunteer on-call chaplain program at Loudoun Hospital near Leesburg, Virginia, for just such an event. It was my turn.

The small ritual of prayer to the bedside

I entered the room and found the young mother in her bed with the father of the child sitting next to her. Her mother was in the chair next to the bed. She went into labor at 20 weeks and, of course, the baby did not survive. All in the room were very quiet. I said, “I heard you lost your baby. I am so sorry.” The mother nodded her head as she just looked down. They did not seem in the mood to talk much. I asked if they would like to have a prayer and they said, “Yes.”

It was a short visit. I offered my pastoral presence and brought the small ritual of prayer to the bedside.

I am glad to do what I can but I often am sorry that those I am called to meet did not have their own faith community to call on in such an emergency. Losing a pregnancy needs more than just a prayer. What about grief counseling? How could a faith community support this family in their loss?

This family needed more than a quick prayer

Contrast this visit to one I made a while back to the emergency room. The rescue squad was heading toward the hospital with a man who had suffered what turned out to be a fatal heart attack. The ER staff wanted a chaplain there to comfort the family. The man was in his 50s and there were two children and his wife. He had no history of heart problems and just collapsed and died.

One of the first questions I asked the family was if they had a faith community. They immediately said yes and gave me the church name and pastor’s name. I called him. He was shocked and distraught over this death of a friend and parishioner. Of course he would be right over. I stayed until he arrived.

Again, this family needed more than a quick prayer next to the dead husband and father. They had funeral plans to make then the long road of grief to follow.

America is still a very religious and spiritual nation. But more and more of our population are not connected to any faith community. Those who answer “None” on surveys asking religious preference are at an all-time high. These “nones” might consider themselves spiritual but not religious.

Spiritual needs are great yet many people have no place to turn

As a healthcare chaplain I run into these folks all the time. That is why medical facilities have staff chaplains. The spiritual needs in the midst of a health crisis are great yet many people have no place to turn. I like to think the future employment opportunities for chaplains are good given the need.

Of course, I wish more people had their own faith community to turn to. I remember in my days as a nursing home chaplain I could judge how important spiritual things were to a new patient just by reading their admission papers. The response to “religious preference” and “congregation” ran from “none” to “Christian” or “Jewish” to something like “First Methodist Church” to even including the pastor’s name and phone number. The more details I got on the form showed me someone who took their faith more seriously.

I don’t want to come across here as judging people for not going to worship somewhere. But I wish people stopped to think, “Who would I call if there were a sudden death in my family?” If the faith element is important then find a community now. Most faith communities handle crises very well. They are there when you need them. Sure, we can scurry around and find a volunteer to show up for a few minutes. But faith communities have so much more to offer.

Photo by Jonnica Hill on Unsplash

A Tale of Two Docs

Posted by

There are the best of doctors for end-of-life care and the worst of doctors for end-of-life care.

In my last blog I told the story of two physicians. Dr. Rogers took care of my mother in the last months of her life. He is among the best of doctors for this phase of life. The other doc, I’ll call Dr. Smith, was among the not-so-good ones. I will repeat my short story:

The other doc was among the not-so-good ones

. . . I had a patient once at the nursing home whose dementia had advanced to the point where he did not know his wife, wandered the halls, and urinated in the corners. He had a long and proud career in the FBI and was now reduced to living most people’s worst nightmare. I suggested to his wife that she speak with the physician about a “No CPR” order. She reported back to me that when she requested the order, the doctor hesitated and referred to me as the “chaplain of death.”

I was shocked. Here I had done the hard work for him in addressing the emotional and spiritual issues and sent a caregiver to him requesting what, in my view, was a most appropriate order. If this patient could see himself and have a right mind, I was certain, and so was his wife, that he would welcome death. His heart stopping was the only way to be free from the dementia ravaging his mind. . . .

I am sure Dr. Smith is a fine doctor in many ways. He probably took good care of this nursing home patient. He just seemed uneasy making the shift to “comfort care only” as this patient moved toward the end of his life.

What makes the difference between the best docs and the ones who have room for improvement?

First, Dr. Rogers was more patient-centered. He tried to ascertain what my mother would have wanted and how she felt about her current condition. “How did your mother feel about her dementia?” he opened the conversation.

I wasn’t in the room with Dr. Smith and the wife of the advanced Alzheimer’s patient at the nursing home, but it appears he was more interested in treatment orders. If he had just stopped to inquire about what the patient might have wanted, he could have spared the wife from feeling like she was asking for a death sentence.

Secondly, Dr. Rogers offered his professional opinion based his experience and a “best practices” approach at the end of life. Once he had us establish what Mom’s feelings about advanced dementia were, he told us what was needed to reach the goals of mom’s care.

The wife of the Alzheimer’s patient needed the advice of a doctor who could tell her about the limited effectiveness of CPR and the appropriateness of a “No CPR” order. She got that information from me and the doc belittled my contribution.

Lastly, Dr. Rogers saw death as the inevitable end of the course of treatment following my mom’s fractured hip. He could not stop her death although he could have recommended a treatment plan that could have prolonged her dying. She could have been sent to the hospital for hip surgery, IVs, and perhaps a feeding tube. She could have been with us for a longer amount of time. But she was going to die sooner or later as a result of this fractured hip and the advanced dementia.

Dr. Smith seemed to think death could be stopped or at least postponed. If he read the medical literature he should have known that CPR offers no hope of saving the life of this patient. Good medical care has a lot to offer patients at the end of their lives. Dr. Smith could have sought to keep the patient comfortable rather than trying to stop death with resuscitation attempts.

The Dr. Smith’s of this world are not bad people . . . maybe not even bad doctors. They just need to see death as part of life and that the physician has a role in making a passing as comfortable as can be.

CPR Did It For Me

Posted by

CPR did it for me.

Not the procedure ON me but my awakening to the fact that some widely used treatments have little benefit for vast numbers of patients.

I became a nursing home chaplain in 1983 with no experience in healthcare. I was introduced to the standard practice of performing CPR on all patients without a pulse unless they had a “Do Not Resuscitate” (DNR) order. Actually, at our nursing home, the order was “No CPR.”

It is a “death-and-death” decision

That language choice was intentional. The DNR order implies that if you use the procedure the patient would be resuscitated. It was presented as a choice for the patient or family. “Would you like us to resuscitate your mother?” In fact, less than 2% of nursing home residents who receive the procedure have their hearts restarted with CPR. So our order was more honest. “No CPR” meant we would not perform the procedure. You weren’t choosing between resuscitation back to full health or death. There was almost no chance the procedure would work, therefore, you were choosing between CPR attempts and no attempts. I tell people this is not a “life-and-death” decision. It is a “death-and-death” decision. The patient will die no matter what the choice is but one is choosing the nature of the death.

In recent years some facilities have stopped using “DNR” for this very reason. Other terms are gaining in use. DNAR for “Do Not Attempt Resuscitation.” My favorite is AND for “Allow Natural Death.” This implies we are not withholding something, we are just allowing the natural processes to reach their expected conclusion. Letting be.

Cardio Pulmonary Resuscitation started in the late ‘50s as a means to restart otherwise healthy hearts which had failed. Drowning victims or those who have had accidental electrocution were good candidates. It originally was never intended to be applied on patients where death was not unexpected. Slowly, it made its way into all healthcare facilities as a standing order against death.

[As an aside, I would hope, in the event of sudden cardiac arrest, my children or grandchildren would have CPR attempts. I do not have the same hope for my 92-year-old mother with Alzheimer’s.]

CPR has been shown to be virtually ineffective for large groups of patients.

Now, even after decades of “improvements” in the procedure and research into its effectiveness, CPR has been shown to be virtually ineffective for large groups of patients. And we know before we start who some of these patients are. CPR offers no benefit to: patients in the terminal phase of an illness; patients who cannot live independently (all long term nursing home patients and assisted living residents); and patients who have multiple medical problems in advanced stages.

Why?

Why do we attempt to resuscitate a patient when we know ahead of time it will not work?

One of the reasons is that many physicians do not know the truth and/or fail to inform patients or their families about the ineffectiveness of CPR in a particular case. Conversations to inform patients and families take time and can be emotionally laden. So, some physicians take the easy road and never have the conversation or just ask, “Do you want us to resuscitate your mother?” without informing the family that the attempt will not work.

Another reason for widespread use of resuscitation attempts are the unrealistic expectations of the general public, often influenced by television portrayal of patients being rescued by paramedics or hospital personnel. A few years ago study analyzed how CPR was depicted on popular TV shows. On “Rescue 911” 100% of resuscitation attempts were successful, when in the real world only about 15% are successful on all patients. No wonder families inform physicians to “try everything” when they have seen “everything” on TV and it works all the time.

An even greater reason CPR is performed on patients who will not benefit are the emotional and spiritual issues surrounding the “No CPR” order. I had a nursing home patient who was failing and near death. He was still a “full code,” meaning everything should be done to save his life including resuscitation attempts. I spoke with his daughter and explained the ineffectiveness of CPR on patients like her father and that our medical director recommended a “No CPR” order for all such patients. She said, “I know CPR will never save my father’s life, but it is just so hard letting go.”

Symbolic gestures only with no medical benefit.

CPR has become a symbolic gesture. In many cases, we know it has no medical purpose. Yet it allows patients and families to maintain the illusion of holding on, the illusion of control. They can’t let go or let be.

Later in my career, I learned of other ineffectual treatments like IV hydration for dying patients or feeding tubes for advanced Alzheimer’s patients. These have their own illusions for doctors and families but are symbolic gestures only with no medical benefit.

As a pastoral caregiver I see a great opportunity for ministry with those who say they want to “try everything” in face of certain death. There is something else going on when people say they want a resuscitation attempt when they know it to be ineffectual. I say, “Tell me more about wanting CPR. That is a very unusual request for someone in your condition.” The tears and the words come forth. “I am afraid of dying.” “I don’t want to lose mother.” “I hope to reconcile with my father.” These are real issues but CPR attempts do not address them.

Beating on someone’s chest will not take away their fear of death nor reconcile them with a family member. Perhaps a chaplain, social worker, or clergy person could help. Please, somebody tell these people the truth and deal with the real issues behind resuscitation attempts.

Quality of Life Publishing Logo

Quality of Life Publishing Co. is the proud publisher of Hank’s books, as well as other branded educational materials for health care & end-of-life care.

www.QOLpublishing.com

Copyright 2020, Hank Dunn. All rights reserved. Website design by Brian Joseph Studios

Volume Discounts for Branded Book Orders

Minimum quantity for branded books is 100. English and Spanish branded books are sold separately. Click here for more information or contact us with questions.

Black

  • 100 to 249 copies: $3.97 each
  • 250 to 499 copies: $2.81 each
  • 500 to 999 copies: $2.21 each
  • 1000 to 1499 copies: $1.66 each
  • 1500 to 1999 copies: $1.40 each
  • 2000 to 3999 copies: $1.27 each
  • 4000+ copies: $1.08 each

Color

  • 100 to 249 copies: $6.62 each
  • 250 to 499 copies: $3.92 each
  • 500 to 999 copies: $2.76 each
  • 1000 to 1499 copies: $1.93 each
  • 1500 to 1999 copies: $1.58 each
  • 2000 to 3999 copies: $1.41 each
  • 4000+ copies: $1.14 each

Volume Discounts for Unbranded Book Orders

Discounts apply to the total books ordered of all titles. Mix and match to get quantity discounts on unbranded books.

  • 1 to 9 copies: $7.35 each
  • 10 to 24 copies: $5.13 each
  • 25 to 49 copies: $4.24 each
  • 50 to 99 copies: $3.75 each
  • 100 to 249 copies: $2.87 each
  • 250 to 499 copies: $2.37 each
  • 500 to 999 copies: $1.98 each
  • 1000 to 1499 copies: $1.54 each
  • 1500 to 1999 copies: $1.32 each
  • 2000 to 3999 copies: $1.21 each
  • 4000+ copies: $1.05 each
There are no products