MUST WATCH: Ain't the Way to Die (@ZDoggMD)

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ZDoggMD (Dr Zubin Damania), once a hospitalist, now a primary care revolutionary with his Turntable Health project, has always made hilarious videos about life as a physician, the patients we see, and the culture of medicine.

Below is his most poignant piece, revealing the difficulties of end-of-life conversations and medical futility both from the patient and the physician perspective. It's not corny or cheesy. It is bang-on.

"Ain't the Way to Die" (a parody of Love the Way You Lie, by Eminem and Rihanna) is so scarily accurate. The same problems he sings about are what I wrote about in "I QUIT! Will the law force us to provide futile, harmful care?"

I have not quit medicine, probably because there are people out there like Dr Damania who understand exactly what it's like to be asked to prolong someone's suffering.

I've never been able to relate to the angst expressed in a rap before, I guess because I don't have a lot of angst. But this video takes the words right out of my mouth, highlights all the heavy-sigh moments of these conversations - it's time to call the family, the relative in another country who says "he'll wake up," or the conflict in the family between ones who know he would not want to be a vegetable and the others who are holding on out of guilt or fear.


The vent-bucking sounds and monitor bleeps incorporated into the end of the song squeeze the adrenals.

Do watch. 

4 minutes could not be better spent.

Lyrics: “Ain’t The Way To Die”

Based on “Love The Way You Lie” by Eminem and Rihanna

Just gonna stand there and watch me burn
End of life and all my wishes go unheard
They just prolong me and don’t ask why
It’s not right because this ain’t the way to die, ain’t the way to die

Patient:
I can’t tell you what I really want
You can only guess what it feels like
And right now it’s a steel knife in my windpipe
I can’t breathe but ya still fight ‘cause ya can fight
Long as the wrong’s done right—protocol’s tight
High off of drugs, try to sedate
I’m like a pincushion, I hate it, the more I suffer
I suffocate
And right before I’m about to die, you resuscitate me
You think you’ve saved me, and I hate it, wait…
Let me go, I’m leaving you—no I ain’t
Tube is out, you put it right back, here we go again
It’s so insane, ’cause though you think it’s good, I’m so in pain
I’m more machine than man now, I’m Anakin
But no advanced directive, I feel so ashamed
And, crap, who’s that nurse? I don’t even know her name
You lay hands on me, to prolong my life again
I guess you must think that this is livin’…
Just gonna stand there and watch me burn
End of life and all my wishes go unheard
They just prolong me and don’t ask why
It’s my right to choose the way that I should die

Doctor:
You ever love somebody so much, you can barely see when you with ‘em
That they, lay sick and dying but you just don’t wanna let ‘em
Be at peace cause you miss ‘em already and they ain’t gone
Beep beep, the ventilator alarms
I swore I’d never harm ‘em, never do nothing to hurt ‘em
Hippocratic oath primum non nocere now I’m forced just to torture ‘em
They push full code, no one knows what his wishes were
His sister heard him say once, “I don’t wanna be a vegetable”
But no one agrees in the family, his caregiver Kate
Wants him comfort care but Aunt Claire lives so far away
That her guilt eats her like cancer
So she answers, “Wait! I think he’ll wake”
Maam, you ain’t even in the state!
Palliate, relieve pain, get him home, explain
Critical care? Just hypocritical when it’s so insane
But they insist I shock his heart again so I persist
Guess that’s why they say that love is pain.
Just gonna stand there and watch me burn
End of life and all my wishes go unheard
They just prolong me and don’t ask why
It’s my right to choose the way that I should die
The way that I should die


Source: http://zdoggmd.com/aint-the-way-to-die/

Quaternary Prevention, P4

We still lack a unifying name, but initiatives like "Right Care," "Choosing Wisely," "Preventing Overdiagnosis," "Prudent Healthcare," and others all seek to describe, categorize, confront, or improve upon the status quo of what's being done: too much medical stuff and too little caring for people.

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    Jamoulle M. Quaternary prevention, an answer of family doctors to overmedicalization. International Journal of Health Policy and Management, 2015, 4(2), 61–64

Jamoulle M. Quaternary prevention, an answer of family doctors to overmedicalization. International Journal of Health Policy and Management, 2015, 4(2), 61–64

 

Quaternary Prevention

You may have read lately about Quaternary Prevention (Prévention quaternaire) or P4, a major initiative of this movement. This – in the words of Ray Moynihan – "awkwardly titled" idea came originally from Dr Marc Jamoulle (@jamoulle), a Belgian GP, almost 30 years ago.

He coined the term "Quaternary Prevention" to describe 'an action taken to identify a patient or a population at risk of overmedicalisation, to protect them from invasive medical interventions and provide for them care procedures which are ethically acceptable.' Essentially, it is a process that explicitly considers and thus enables avoidance of iatrogenic harm. 

"Quaternary prevention should take precedence over any alternative preventive, diagnostic and therapeutic, as dictated by the principle of primum non nocere." (Wikipedia)

P4

*NB*: Be careful not to confuse Jamoulle's term P4 with the more popular P4; predictive, preventive, personalized, and participatory (P4) medicine, with a focus on detecting and dealing with disease before it even exists, may (arguably) be the antithesis to Quaternary Prevention.

Jamoulle's idea came first, anyway. His original 1986 article Information and computerization in general practice (en français) started the discussion around quaternary prevention, with a particular focus on how information technology can dehumanize healthcare. He has refined the idea, with presentations at WONCA world conferences and many publications (listed here).

View Dr Jamoulle's page on Quaternary Prevention "P4" or read more

Although the cumbersome title will probably dissuade related initiatives from taking the name and falling under the umbrella of 'quaternary prevention,' we are all united in the spirit of our efforts. I remain in awe that Jamoulle and others had the wisdom to begin the discussion of harms of overdiagnosis in a time while mammography was just gaining momentum, ADD was rarely diagnosed and yet to be redefined as ADHD, and I was still in diapers.

I QUIT! Will the law force us to provide futile, harmful care?

My partner, Ian, is a pilot. Sometimes he has to get up very early, and one day this week I woke up with him and his alarm at 4:00AM.

While he got ready for work, I flipped through the news on my phone. When I found this story by Tom Blackwell, a health care reporter with the National Post, I lay in bed stunned, unable to fall asleep again.

Toronto hospital illegally imposed ‘do-not-resuscitate’ order against wishes of dying man’s family: medical board (Read)

I was not stunned to read that doctors deemed it inappropriate to offer resuscitation, intubation, and ICU-level care to an 88 year old man who had multiple significant medical problems, including recent bilateral leg amputation. The average patient over 85 has a ~4.5% chance of "good outcome" (leaving the hospital neurologically intact) after resuscitation and I expect this man's chance would have been much lower given the vascular implications of bilateral leg amputation (Good Outcome Following Attempted Resuscitation).

The story mentioned that the doctors unilaterally imposed the DNR order. To read that they switched from DNR to FULL CODE at the family's request is testament to the pressure they must have felt. When they switched it back, it sounds like they did not inform the patient's family of the change, which I think is unfair. However, refusing to provide medically futile care is something that doctors need to be able to do.

I am terrified of the precedent set by the decision of the Health Professions Appeal and Review Board.

Ian, tying his tie, was not surprised at my dismay. I told him I'd have to quit medicine if providing harmful and futile treatments became the law in my jurisdiction.

I can't do it. I just can't.

He looked at me, empathetically. He often tells me that if he took his work home, it would be a bad day for everyone. Plus, commercial aircraft are not allowed in our on-street parking area.

He knows my work is with me all the time. My heart aches far too often these days, as I wonder how long I can last in my job a large, big-city academic hospital where we face demands for unnecessary and sometimes harmful intervention regularly.

These discussions are usually different when undertaken in a rural setting. I've worked in Nunavut, where many people still hunt for the majority of their food, and patients and families seem to understand death. It is not that death is welcome, but there is an understanding that life on Earth will end. When a dying patient tells me their fear of losing dignity and of being in pain, I can reassure them, I can ease their physical pain and support them emotionally for their remaining time. I feel that I am needed as their doctor, and they trust me to help them in any way I can.

Lately, at the big city hospital, colleagues and I have been dealing with families that are adamant we provide what we consider futile and inappropriate care. This is medical care that physicians believe is not helpful and may even be harmful to a patient.

We all want to look after the patients as best we can. We want to be seen as good at our jobs and we want to be liked but above all, we want to do the right thing.

We talk about it at lunch. We wake up in the middle of the night worrying about it. I know this because I asked a colleague if I was the only one, and he told me that he had been up the previous night, worrying about what to do! The oath we swore tells us "Above all, do no harm" and yet we are constantly being asked to prolong suffering. It is distressing. How can we so flagrantly violate our ethical responsibilities?

 

Each person holds has varying definitions of "suffering." So, we talk about these cases, nurses give us their thoughts, and we get multiple physicians including specialists involved to bring new perspective. Sometimes there's an ethicist brought in to help. Most of the time, all the professionals agree.

However, no matter what we say, we cannot sway the family to see that their loved one is in pain. They will not allow us to let them go, and they are incredibly angry at us for suggesting we will not attempt to force-feed them or bring them back to life when their heart stops.

We wonder, is it uneducated families? No, many of those demanding the most aggressive interventions are health care providers themselves. In the story that kept me awake, the daughter is a nurse. In the Rasouli case, where physicians sought to withdraw futile care, the wife of the patient was a family physician in Iran.

Are they expecting miracles?

Is it that they feel entitled to have whatever they want? Do people regard healthcare as a concierge-style service where they can pick and choose whatever options they like?

Ian says:

Thank goodness the passengers don't come into the flight deck and try to tell me how to do my job! If they told me I should land the airplane even though conditions were unsafe, I'd say 'no way!'

I guess it's not that simple in medicine, as health care is a right and a public service. We do have a duty to help people, but sometimes we disagree on what that looks like.

We encourage patients to have some skepticism, to ask questions, and to take part in their health. They put their trust in us to choose the right treatment, to recognize when we need to consult a specialist, and to guide them through the tough times. But when it comes to death and dying, people get squeamish. The trust vanishes.

 

Many families are quite reasonable. They might have a hard time letting go, but gradually, they start to see that mom is really unwell and does not seem comfortable, and they let us do our best to care for her. It's the egregious cases that stick in my mind, the ones where I feel like I've been asked to hurt someone despite my protestations.

I'm not advocating for a return to paternalism. Tell us your goals, your values: what is important to you? Just as you trust a pilot to adapt the flight plan to bring you safely to your destination, trust that your healthcare providers will do their best to shepherd you through your illness.

Discussions usually involved patients with advanced age, multiple co-morbidities, and poor quality of life. Many of these patients do not have Advance Directives, and even if they do, their families do not have to respect their wishes and neither does the law.

The patients are often too unwell to speak for themselves and so it is the family that requests things like resuscitation (as opposed to DNR), artificial feeding (feeding tubes), or what we call "active medical management" which means 'usual treatment' (as opposed to comfort-focused care) in the context of someone who is dying.

Instead of facing what is a natural part of life with grace and dignity, some patients are not allowed this opportunity. They are instead medicalized, which in some cases means brutalized.

A patient who hasn't eaten for weeks is malnourished, yes. That is the progression of her dementia. She has lost the ability to swallow. Her family wants her "helped" by putting a nasogastric (NG) tube into her stomach. She's dying, and this may delay it, but it might also hasten it. Regardless of how long she lives, her last days will be uncomfortable, plagued with complications.

In the face of death, food and hope are highly seductive. But . . . I was left wondering: Does our need to feed our dying loved ones blind us to what’s really best for them? – Dr. Jessica Nutik Zitter, Food and the Dying Patient

Doctors are reluctant to participate in things that seem like torture. We swore an oath that we would not. We try our best to keep the patient's best interests in mind, but after we've fought and fought, sometimes we give in, tired out and afraid of being sued.

Samuel Beckett puts it best:

And when they cannot swallow any more someone rams a tube down their gullet, or up their rectum, and fills them full of vitaminized pap, so as not to be accused of murder.” – Samuel Beckett in “Malone Dies”

 

Two days after the first article, Mr Blackwell looked at the issue from another angle:

Doctors more reluctant to clash with families over end-of-life decisions in wake of Supreme Court ruling (Read)


He's right. We are starting to become crippled by fear. Those of us who aren't yet burnt out try our very best to protect the ethical standards we were trained to uphold. But, we all reach a point where we are tired of being screamed at, tired of seeing nurses driven to tears, and most of all, terrified that we will lose the opportunity to continue in the profession that we value so greatly.

We do what is asked even though we know it is wrong – a disgusting thought. I am young and not yet burned out, but I'm heading there fast because I cannot reconcile the idea of going to work every day and being asked to harm people. This angst makes it so much harder to enjoy all the wonderful moments and to remain humbled by the privilege to care for others.

I see the awe that Ian still has for flying, working as part of a team, taking charge of a metal can full of people who are flying home or somewhere interesting, hurtling through the sky thanks to some combination of physics and magic. Medicine can be that awe-inspiring too.

I don't want to quit. This "job" is so much more than that to me, but slowly the 'job' of being a doctor is ruining my love for medicine.

Good + Good + Good = Bad? Recognizing the Harms of Polypharmacy

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This month, Dr Roger Ladouceur writes in the Canadian Family Physician (CFP) about a 65 year old patient of his with many co-morbidities. He treated her with guideline-based care, resulting in her taking 16 medications and perhaps, as he solemnly suggests, in someone's death.

Not hers.

We will never know, but polypharmacy may have been a factor in why her vehicle careened across the median and struck a pedestrian who was crossing the street, eventually killing him.

It is noble of Dr. Ladouceur to draw attention to this case; it takes a brave person to consider error, reflect meaningfully, and to move forward with purpose. Trying to help this woman achieve health is not a "mistake" by any means, however with the opportunity to take a step back, he saw that in trying to help her, he may have caused harm.

Good intentions are essential to providing good care, but with everything we do, we may cause harm. Polypharmacy is a perfect example of how evidence and guidelines can compound to create an untenable state. As he writes:

I am not the only physician to prescribe so many medications; most of us often prescribe a substantial number. This is not about assigning blame; we are following the recommendations. Each medication is justified for the indication for which it is prescribed. But what happens when they are all taken together, even when there are no drug interactions?
Could it be that, for a man who went for a walk after breakfast, prescribing 16 medications was fatal? Could it be that, sometimes, we do too much?

Read the very thoughtful article here.