Burdening families with CPR decisions in the face of futility is cruel

by MONICA WILLIAMS-MURPHY, MD

Those who know and work with me have heard me state without hesitation that it’s morally wrong to do CPR on 90-year old great grandmas. So, it was with great relief that I read the “Do Not Offer CPR” option in a recent JAMA article urging a revision of our present approach to the use of CPR for those who are unarguably at the end of life.

This is a change from the present expectation of CPR no matter what, to a set of recommendations that incorporates the question of whether CPR “harms or helps” individuals. Finally, some sanity.

Medicine attempts to balance patient autonomy with the grand directive: “First, do no harm.” Recently, I have also discovered that as a doctor, it is also my job “to do no harm” to the families and surrogate decision makers of those in my care.

Last week, I learned that even asking families to make CPR or DNR decisions in the face of almost certain death creates unnecessary harm for them as well. In the following case, I created a decision-burden for a family that they neither wanted, needed, nor could handle—a decision-burden that would not change the outcome (death), yet would likely trouble them for the rest of their lives.

This case drove home to me another compelling reason why CPR should not be offered to those who are imminently dying: not only does the act of CPR harm the dying patient, the actual act of asking the families to make futile CPR vs DNR decisions harms them as well.

Mr. Gray was an 80-year old great-grandfather of 12. For years he had taken a blood thinner for his heart condition, without any complications, until 3 days before I saw him.

3 days prior, he had fallen and hit his head, developing a large bruise across his forehead. Despite his family’s urging, he had not gone to a doctor to get it checked out. Instead, he went about his daily activities, bothered only by a mild headache. This headache suddenly became severe on the 3rd day and he began to vomit. Immediately after vomiting, he became confused.

No more messing around, the family called 911. Mr. Gray was now too confused to argue or refuse a medical evaluation.

EMS loaded him up easily enough though, and told the family to follow them for what would be a short ride to the hospital. The ride was short enough, but something terrible happened during the transport-Mr. Gray fell unconscious and stopped breathing.

What ensued on arrival to my ER was high-end aggressive emergency care: he was intubated, placed on a ventilator, we placed multiple IVs, gave mannitol, ordered emergency plasma and ran with Mr. Gray to the Cat Scanner, all within minutes.

I tapped my foot impatiently awaiting the images of his brain to load up on the computer.

“Darn it,” I muttered when I saw the pictures confirming what I had already clinically diagnosed and begun treating. A large hematoma had developed on his brain. According to the radiologist there were already signs that his brain was herniating.

Just then, I got a call from the lab. Mr. Gray’s blood thinner levels were toxic. It would take hours to correct this before Mr. Gray could even go to surgery, and what Mr. Gray did not have was hours to wait. What he did have was a large, loving and very concerned family whom I had yet to talk to in detail.

I spoke with the neurosurgeon before I gathered this family. The specialists said that due to the blood thinner toxicity, the delay would most likely make the injury unsurvivable — meaning, we expected him to die.

I let out a long sigh and said, “Yeah, that’s what I thought.”

Hanging up the phone, I braced myself to talk to the family.

When I walked into the family waiting area it seemed to be standing room only. I asked those who could to take a seat. Sitting or standing, everyone leaned forward, anxiously, with expressions mixing dread with hope.

No matter how many times one has done this, these conversations are never easy. First, I gave the general explanation of what had occurred and how bad things looked for Mr. Gray. I explained that surgery to remove the hematoma could not be performed until the blood thinner problem was corrected and that this wait would most likely prove to be “too long” for him.

Tears began to flow. Children grabbed the hands of parents and siblings looked at each other in shock.

Next, I outlined all of the “doctor-driven” decisions that would be made and explained possible outcomes. If A happens then we can do B, but if C happens then B is not an option.

Then, finally, I laid the most serious decisions on them. How would Mr. Gray die, when his time comes? Would they allow natural death by withholding CPR? Would they request an attempt at CPR? Finally, would they consider withdrawing artificial life support measures.

Already grief-stricken, I watched their eyes glaze over in fear and pain as I gave them these final options and explained that eventually we would need to have a family decision on these choices (in the absence of a pre-selected decision maker to speak for Mr. Gray).
Looking around the room at heads hung low, there was deep silence. I stared at my feet, not looking at them in an attempt to give them space for thought.

But in that quiet moment, something shifted within me. I began to feel ashamed that I had even asked such questions at all. In that moment, I began to understand that the burden I had given them was too great and complex. I was asking them to participate in choosing his death, a task that they clearly did not want- something they obviously had never discussed. And, saddest of all, after pressuring them for an answer, this answer was not going to change the outcome for Mr. Gray-he was still probably going to die and all that they would have gained from this situation is a persistent guilt burden about whether they made the right choice or not.

Suddenly, it became so clear to me that this should not even be their burden at all. In that moment, I grew to understand that it was wrong to even ask families to make such decisions in futile circumstances – that should be my job. I should be the one who guides them through this time by saying, “CPR will not bring him back to who he was, it will not help him, it would only cause us to do further damage to his dying body. Because of this, we will not perform CPR on Mr. Gray when his heart stops, but we will care for him in every other way. We will make sure that he is comfortable and that you are with him. Now is your time to say, ‘Thank you, I love you, and good-bye.’”

I lifted my head. Looking around the room, I saw the strain on everyone’s faces and knew more than ever before that the way we practice end-of-life medicine must change.

Mr. Gray and his family, taught me first hand that it is cruel to burden families with CPR decisions in the face of futility. This type of decision-making should be built into medicine. It should be part of an end-of-life algorithm that is created and supported by the entire medical establishment for 3 reasons in addition to those cited in the JAMA article:

The maxim of “first, do no harm” should be extended to not just the patient, but also to the families of the dying patient in our care. We should not harm their emotional lives and consciences by asking them to make decisions about CPR that are ultimately futile. Such a burden is pointless and creates unnecessary suffering.

The Patient Self Determination Act of 1990 states that a patient or patient representative has the right to refuse or accept any medical procedures offered to them. This is the legislative back bone of modern concepts of patient autonomy. Presently, CPR is the default option and is therefore automatically offered by the medical system. But, as we learned from Mr. Gray and his family, there are times when this is inappropriate. I support the position of the JAMA article: “Physicians should not offer CPR to the patient who will die imminently or has no chance of surviving CPR to the point of leaving the hospital.” (Like Mr. Gray, whom we expected to die within 24 hours). Instead, we should spend our energies focusing the patient and families on creating comfort, peace, and closure with their remaining time together.

If the entire medical establishment agrees to create and adhere to guidelines outlining the exclusion criteria for CPR, like exclusion criteria for thrombolytics in stroke, then it cannot be argued that not offering CPR is a violation of patient autonomy. A patient or family cannot demand a procedure that is not offered when it is considered medically contraindicated.

In the end, it is we doctors who need to shoulder the burden of CPR decision making in futile situations. It is the burden for which we were trained, the years of experience caring for the dying, the hours of studying statistics and outcomes. We cannot in good conscience guide all other life-sustaining medical decisions then suddenly shift all death-determining medical decisions back to the family … it is a burden they are not equipped to bear and one they may never shed.

Complete Article HERE!

Doctors hesitate to prolong their own lives to avoid pain

IT IS a common refrain from doctors doing the ward rounds in the intensive care unit of any major hospital: ”Please don’t ever let this happen to me.”

Most often the words are uttered at hand-over time when the day-shift doctors brief the evening-shift doctors at the foot of an elderly patient.

”He might be 80 years old, severe dementia, type two diabetes, previous strokes and a bit of renal failure, and now he’s fallen in the nursing home and suffered a head injury,” says Ken Hillman, professor of intensive care at the University of NSW, ”and the family wants him continued on life support hoping for a miracle.”
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There might be six specialists, eight junior doctors and when one finds the courage to say the words, ”We’ll all nod,” says Professor Hillman.

Professor Hillman believes many doctors would not put themselves through ”the same hell we often put other patients through”.

Professor Hillman is a speaker at a conference at NSW Parliament House next week on living well and dying well. The conference is organised by the non-profit organisation LifeCircle which helps people caring for loved ones at the end of their life. ”We support people having a good life right to the end with the conversations that will benefit the person dying and those they love,” said Brynnie Goodwill, the chief executive of LifeCircle.

With daily reports of miracle cures and medical breakthroughs, many people with advanced life-threatening cancers and other terminal illnesses pursue every possible treatment, no matter how gruelling, in the hope of extending life.

But do doctors choose the same path for themselves? The silence around doctors’ views was shattered earlier this year when Ken Murray, retired clinical assistant professor of family medicine at the University of Southern California, wrote in The Wall Street Journal that ”what’s unusual about [doctors] is not how much treatment they get … but how little.” He said doctors did not want to die any more than anyone else did. ”But they usually have talked about the limits of modern medicine with their families. They want to make sure that, when the time comes, no heroic measures are taken.”

Medical scepticism about life-saving interventions was revealed in a 1996 German poll where about half the specialists admitted they would not undergo the operations they recommended to their patients. A study last year, published in Archives of Internal Medicine, showed doctors often advised patients to opt for treatment they would not choose for themselves.

For example, asked to consider treatments for colon cancer, 38 per cent of doctors chose the option for themselves that had a low rate of side effects but higher risk of death (over an option with a high rate of side effects but lower risk of death). But only 24 per cent recommended this option for their patients.

Martin Tattersall, the professor of cancer medicine at the University of Sydney, said: ”I suspect very few doctors would opt for second or third line chemo therapy; my suspicion is that doctors are more likely to prescribe futile therapy than accept it. They’re aware of the statistics. The fact we’re not invincible is something doctors are reminded of every day of their practice and it probably slightly colours their attitude to fighting death as opposed to accepting it.”

Dr Rodney Syme, the author of A Good Death, said his father, a surgeon, when diagnosed with pancreatic cancer, refused surgery to relieve his jaundice even though he had performed the surgery on others many times. ”He didn’t believe there was enough merit in it,” Dr Syme said.

But Richard Chye, the director of palliative care at Sacred Heart, part of St Vincent’s Hospital, said doctors were distributed along the same spectrum as everyone else. ”I’ve known doctors to continue treatment right up until the end,” he said. ”It’s very much about their age group and attitude.”

Professor Hillman said 70 per cent of Australians said they wanted to die at home but 70 per cent died in hospitals.

Complete Article HERE!

This is an ex-parrot!

Customer: “He’s not pining! He’s passed on! This parrot is no more! He has ceased to be! He’s expired and gone to meet his maker! He’s a stiff! Bereft of life, he rests in peace! . . . His metabolic processes are now history! He’s off the twig! He’s kicked the bucket, he’s shuffled off his mortal coil, run down the curtain and joined the bleeding choir invisible! This is an ex-parrot!”

— Monty Python


Death Is A Hard Sell

I had a very interesting weekend. On Saturday, June 2nd, I attended a day long event at the Fred Hutchinson Cancer Research Center. The program was titled: Moving Beyond Cancer to Wellness.

It was a great program full of interesting workshops. There was also a small vendors area. A bunch of cancer-related agencies set up tables and on them they displayed their brochures for the programs and support they offer people living with cancer.

I thought this would be the ideal setting for networking with other like-minded folks, so when I visited each of the vendors I introduced myself and proudly handed the person at the table a copy of my book. The reactions were nearly always negative or at least alarm. Once the person saw the title, The Amateur’s Guide To Death and Dying; Enhancing the End of Life, the smiles that greeted me when I first approached the table soon turned to dismay. Their reaction to the book was as if I had handed them something disgusting.

It was immediately clear to me that bringing a book about death and dying to a cancer survival event was a huge faux pas. Despite my protestations that the work their agency was doing and the information in my book were very much alike. The only difference being their outreach is disease-specific, while my book is about mortality. I wasn’t able to convince them.

So ok, I get it. Death is a hard sell to the disease-specific crowd. Apparently contemplating one’s mortality, even when it is staring us in the face is not the politically correct thing to do. But why is that? Facing our mortality doesn’t undercut a person’s commitment to fighting his/her disease process. I contend that consciously facing the prospect of life’s end really helps put our effort in fighting a disease into perspective.

Curiously enough the reaction I got from the other participants at the Moving Beyond Cancer to Wellness event was much different from that of the vendors. I think most people who encounter their mortality through a disease process, like cancer, know, deep down inside, that this could be the beginning of the end. Why else would people react as they do when they get a diagnosis?

The other participants at the event, the ones I showed my book to, had a much less phobic reaction to it. I contend that this is because they’ve already put themselves there, at death’s door. This sort of takes a lot of the sting out of death.

Were they any more enthusiastic about taking a long hard look at their own mortality? Probably not. But then again, they weren’t as resistant to the idea as were the ostensibly well people manning the vender tables.

I try to imagine what things would be like if we all were encouraged to examine the end of our life, much in the same way as women are encouraged to do a periodic breast self-exam. I mean, examining one’s breast for lumps, or other abnormalities doesn’t increase your risk for breast cancer, right? Neither does facing one’s mortality in a conscious, upfront way hasten death.

Finally, on Sunday I met with a young couple for their weekly couple’s counseling session. Once we were all settled in, I handed them a copy of my book. (I just love watching people’s reactions.) The young man spoke first. “That’s a bit scary.” He said after he read the title. “Scary, I mean for the people who need this book.” I replied, “I suppose it is. But you know what’s even scarier? Not thinking about the end of life before it’s too late. I mean, are you certain that you’re not among those who need this book? Are you certain that you will live to see the end of the day?”

Death is a hard sell in our death-denying culture. Yet, each of the people I encountered this past weekend will, in time, face the end of their life. That’s a given. The big question is; will they have the time or even the inclination to face their mortality in a way that will enrich their lives as they live it to the end?

Last Laugh

Comedian Alexei Sayle produced this short video, entitled “Last Laugh,” to help people confront attitudes about terminal illness.

Massachusetts voters support medical marijuana and ‘death with dignity’ ballot initiatives

A majority of Massachusetts voters seem to be in favor of two controversial ballot initiatives that supporters say would ease the suffering of ill Massachusetts citizens.
Sixty percent of Bay State voters said they support allowing terminally ill people to legally obtain medication to end their lives, according to the latest survey from Western New England University Polling Institute in partnership with The Republican and MassLive.com.

Sixty-four percent of voters, meanwhile, backed legalizing the use of marijuana for medical purposes and 27 percent opposed the idea, according to the survey of 504 registered voters conducted from May 29 to 31.

Under state law, more than 68,000 certified voters must sign an initial petition to place an issue on the November ballot, with not more one-quarter of all the signatures coming from the same county. If the legislature does not take up the issue, an additional 11,000-plus signatures are needed by June 19th to put it on the ballot.

So as long as the initiatives fulfill the legal requirements, Massachusetts voters will have their say on the respective issues on election day.

“Polling on ballot questions is tricky because responses can be highly sensitive to question wording,” said Tim Vercellotti, associate professor of political science and director of the Polling Institute at Western New England University. “The actual questions that the voters see on the ballot tend to be longer and more complicated. Our questions attempt to get to the essence of each issue.”

The survey asked voters whether they supported or opposed “allowing people who are dying to legally obtain medication that they could use to end their lives,” according to Vercellotti.

Support for the “death with dignity” proposal outnumbered opposition by a margin of two to one in the Western New England University survey, with 60 percent of voters saying they support the idea, 29 percent opposing it and 11 percent saying they did not know or declining to provide a response.

John, a former high school teacher living in Holyoke who asked not to be identified by his last name, said his family’s experiences with cancer and other terminal illnesses shaped his support of the “death with dignity” option.

“I think it should be a matter of personal choice,” he said. “If someone is at the end of their life with a terminal illness and it may continue for six months or a year with terrible suffering and pain, why not give them the option? To me, it is freedom of choice.”

And although John identifies as Catholic, he said that he does not attend services and his religion holds no impact on his stance on the subject.
According to the data, opinions varied along party lines, with 67 percent of Democrats favoring the proposal, compared to 58 percent of independents and 53 percent of Republicans.

Support for the measure also varied by age, Vercellotti said.
While 61 percent of voters ages 18 to 49 and 72 percent of voters ages 50 to 64 support the idea, the same was true for only 46 percent of voters ages 65 and older.
Respondents who were 65 and older also were the most likely of any demographic group to say they were not sure or to decline to answer the question, with 20 percent choosing those options.

“I told them I didn’t know because I didn’t want to just give a quick answer. It’s a complicated issue,” said Robert Sandwald, a retired resident of Hopkinton, Mass. “I don’t want to give an answer I believe in. I’ll be thinking about it in case someone asks me in the future but I just don’t know how I feel about it.”
Views about the “death with dignity” proposal also varied by religion and religious observance.

Vercellotti said that although a majority of Catholic and Protestant voters said they support the proposal, their opinions tend to vary based on how often they attend religious services.

Fifty-two percent of all Catholic voters said they support the idea, 36 percent said they oppose it, and 12 percent said they did not know or declined to answer. But among Catholic voters who attend church at least once a week or almost every week, 52 percent opposed the “death with dignity” proposal and only 37 percent said they support it.
Deborah Greene, a 56-year-old Catholic from Milton who said she attends church services almost every week, opposes the “death with dignity” option.

“I’m against it because I just don’t think it’s right,” Greene said. “It is a religious conflict.”

Catholic voters who attend church less frequently – about once a month, seldom or never – backed the idea by more than a two-to-one margin, 62 percent to 25 percent.
Among all Protestant voters, 56 percent supported the proposal, and 28 percent were opposed. Opinion was much more narrowly divided among Protestant voters who attend services at least once a week or almost every week, with 42 percent opposed and 38 percent in favor.

“The results indicate that religious identity is not the only distinguishing factor when it comes to views on this issue,” Vercellotti said. “Responses varied not just by religious identity, but also by religious observance. When it comes to Catholics and Protestants, the more ‘churched’ you are, so to speak, the more likely you are to oppose the ‘death with dignity’ proposal.”

Voters from other religious backgrounds overwhelmingly supported the measure, with 76 percent in favor and 19 percent opposed. Voters who identified themselves as atheists or agnostic backed the idea by an almost nine-to-one margin.

On the topic of allowing people to obtain marijuana for medical purposes with the prescription of a licensed physician, the results varied by political affiliation, gender, age and education level.

If the proposed law legalizing medical marijuana appears on the ballot and is approved by a majority of voters on Nov. 6, then Massachusetts would join 16 other states in the U.S. by allowing such a treatment option, despite federal law which prohibits it.

The proposed law would allow a physician to prescribe a 60-day supply of marijuana to a patient with a “debilitating medical condition,” such as cancer, AIDS, Parkinson’s disease or a broad category that includes “other conditions.”

The law would also permit up to 35 nonprofit medical marijuana dispensaries or treatment centers across the state, including at least one in each county.
The idea of legalized medical marijuana in Massachusetts has stirred passionate conversation among the commonwealth’s citizens and legislators.

John, the former high school teacher in Holyoke, said he opposes medical marijuana primarily because of the possibility of it being a precursor to full legalization.
“When I was a teacher, I saw the destruction that marijuana caused in the lives of so many young people,” he said. “I’ve seen kids with a tremendous amount of potential just go down the tubes. And I know you can’t completely blame it on marijuana, but it was a contributing factor. I guess I’m opposed to this if it is opening the door to overall legalization.”

Greene, a devout Catholic, said she is open to the concept because of research on the issue.

“As I understand it, there are properties in marijuana that can ease the pain of cancer that come with certain developments in the disease,” Greene said. “So as I understand it, it would be beneficial under medical direction, so I’m open to that.”
When asked whether they would support or oppose legalizing the use of marijuana for medical purposes, 74 percent of Democrats and 62 percent of independents endorsed the measure, while Republican voters were almost evenly divided, with 47 percent opposed and 45 percent in favor.

More than two-thirds of female voters supported legalizing medical marijuana, while the same was true for 58 percent of male voters. Younger voters also responded more favorably than did senior citizens. Sixty-eight percent of voters ages 18 to 49 and 50 to 64 supported legalizing medical marijuana compared to 54 percent of voters age 65 and older.
Views also varied by education, with 68 percent of voters with college degrees endorsing the measure, compared to 61 percent of voters with some college or with a high school diploma or less.

The survey has a 4.4. percent margin of error.

Complete Article HERE!

Death with dignity in the emergency department

The ambulance crew rolled him into my ER breathless in his pajamas, O2 mask on his face, gasping for air, his short cropped hair a mess, standing straight up. Eugene was what the staff called a “frequent flyer.” As the nurse injected some IV Lasix I reviewed his chart to find a classic downward spiral.

It was a busy evening. The bays were full of the usual cuts, broken bones and chest pains, the waiting room with snotty noses and chronic pain patients hoping for a refill from the new kid in town. I was a freshly minted family practice doctor taking a year after residency in this rural California emergency room to take a break, get some experience and make a little money.

I came to call this “a MASH Unit in reverse.” We had no on-site surgery. It was my job to keep the life threatening cases alive until the helicopter arrived to take them to the trauma center a 40 minute flight to the south. In MASH they flew the wounded in. Here my job was to keep them alive until we could fly them out.

I had vowed that no one would die in my Emergency Room if I could help it. Until I met Eugene and Mary Ann.

She was a stark contrast to Eugene. Looked like she had just finished dressing to go to church on Sunday morning: immaculately pressed with perfect hair and her knitting in hand. She had obviously been here before. It was clear from the first second I laid eyes on her that she adored her husband of 56 years. Despite the mask and the respiratory distress, I could see the same love for her in the old man’s eyes.

This was his 6th visit to the ER in the last 18 months. He had a bad heart and it didn’t take much to throw him into pulmonary edema despite 14 pills and over $200/month in medication. On a good visit he spent 4 days in the hospital getting his meds adjusted. On a bad visit he was on the ventilator for 3 days and in the hospital for 10. Each time he emerged weaker. Lately he was wheelchair bound and Mary Ann had learned to deal with adult diapers and getting him around the house. This would be one of the good visits.

I sat down with them once his breathing was easier and asked, “How are you feeling about the quality of your life lately?” Mary Ann wiped some tears as Eugene told me how miserable he was, how much he hated being a burden and what a good life he and his wife had in days past.

None of us said anything for a while. Mary Ann set her knitting aside and sat as close as she could to the bed. They held hands – as the nurses said they always did.

“We can keep giving you medicine and even putting you on the breathing machine if you want, and here is what I am afraid of. It is only a matter of time before you won’t be able to get off that machine. When that happens Mary Ann will be faced with the decision of whether or not she tells the doctors to turn the machine off. I am pretty sure none of us want to put her in that position if it can be avoided. It sounds like you have been pretty miserable lately and you are getting weaker as time goes by.

I want you to know that each time you come in on the Ambulance is potentially the natural end of your life. We are stopping that with our medicines. If the two of you want, we don’t have to do that. If you two have a discussion and decide you would like the next time you come in to be the natural end of your life, and I am in the ER when you come in, I can help that happen for you.”

He was breathing easier. We switched him to the nasal cannula and his sats held. I left the room and let them talk about this new option for a few minutes.

When I returned she was standing by the bed. Eugene spoke. “We want you to help us do that doctor.” I looked them in the eyes and nodded. Both of them were crying in a way that I knew the foundation for their emotions was love – the love everyone sensed when in their presence.

I had them fill out his Living Will and No Code paperwork. Everyone wished them well as they were wheeled to the medical ward. Before the end of the shift I huddled with the staff and told them the plan, secretly hoping – and dreading – I would be on staff the next time.

6 weeks later, at 10PM on a Saturday shift, the call came in. Eugene was on his way. Severe respiratory distress. Rales to the apices. O2 mask in place.

We wheeled him into the room with Mary Ann holding his hand. Eugene was barely able to maintain his consciousness, panting with blue lips. They immediately recognized me. I looked at each in turn. They both nodded and quickly looked away. I gathered the staff and told them what we were not going to do, pulled the curtains around the bed, and held Mary Ann’s free hand.

The noises of the ER receded to a background hum. Mary Ann stroked his forehead as his breathing worsened. She gripped my hand, looking up to me from time to time.

It only took 10 minutes for Eugene to die. At the point of his last breath — we witnessed his passing — that span of seconds when we could sense his spirit leaving, almost see it happening. Joy, memories, love, grief, pain, longing for more time, relief that it was finally over, the last goodbye, filled the room.

Mary Ann was so happy, so sad, so intensely remembering all they had shared. We hugged. She thanked me and everyone on the staff.

Bittersweet doesn’t come close to the taste of that evening. Holy, sacred, the end of a life well lived and a relationship we all aspire to.

I stepped out into the full blast of the sights, smells and sounds of my next patient and the remaining 10 hours of my shift.

Eugene was the only patient I lost in the ER that year.

Dike Drummond is a family physician and provides burnout prevention and treatment services for healthcare professionals at his site, The Happy MD.

Complete Article HERE!