The large majority of what I do, day in and day out, is tend to and treat the critically ill. I work primarily in the intensive care unit because I prefer my patients ventilated and not talking, but I also prefer to deal with real medical problems as opposed to the chronic abdominal pain epidemic found on the floors. And although I do enjoy the intensity of critical care, the procedures involved, and the problems encountered, I do find myself rather frustrated with the overall trend of critical care patients. To be more specific, I am tired of continuing with heroic efforts to save those that are well past their expected life spans.
It is a common complaint throughout the health care field. Nearly every physician that works in a critical care setting, and even those that primarily work on the floors, cringe at the idea of aggressive care for the severely debilitated octogenarian. We wring our hands every time a family elects to send grandma to the ICU, complain among ourselves how futile the situation is, reaffirm our own desires to never have any of this happen to ourselves, but ultimately still treat the patient with the family none the wiser. This torturous charade of “life-saving” care drags on, sometimes for weeks, and ends in only one of two ways: long term nursing care +/- tracheostomy/feeding tube or death. There is no happy ending. This is American healthcare dollars at work!
“Wow! That sounds hella’ depressing! Why do we do this if outcomes are so bad?!”
Excellent question, person-who-has-clearly-never-interacted-with-Americans-before! I got two big reasons for you.
The first and foremost explanation for the above scenarios has to do primarily with the fact that this country is becoming older, sicker, and increasingly unrealistic. The Greatest Generation is nearly dead and they are being followed by their exquisitely narcissistic off-spring known as the Baby Boomers.
The Baby Boomers, until recently, were the largest generation of Americans in existence. They were born around 1946-1964 and were the result of post-WWII blue balls coupled with raging prosperity. Their parents, who suffered through economic devastation prior, were hyper-focused on providing their off-spring everything they needed to succeed in this post-war boon. Good intentions abounded for this generation. They had everything. And what did they do with it? They squandered it.
The Boomers are notorious for their collective narcissistic traits and their limited insight. Unlike most generations, they seem to be focused primarily on the present, specifically their own. Despite having children and proceeding through the game known as “Life”, the Boomers have refused to give up their petulant desire for instant gratification even at the cost of the future (see: President Trump). There are several articles and books which delve into this topic. Most of these will miss the point in some way. If anyone wants a legitimate interpretation of our current cultural crisis, I would recommend listening to a drunk psychiatrist. There is a lot to process in all of that, so I will leave further elaborations to the experts. But given the above, the relevant question becomes “What happens when a narcissist nears death?”.
Or at least, they construct a narrative in which they believe there is a fight that can be won despite the obvious truths regarding their impending mortality.
Let me explain.
There is a common narrative among many Boomers that find themselves on the unfortunate end of an unfavorable diagnosis. The narrative is that this diagnosis (usually cancer) is simply an obstacle to overcome regardless of the fact that it may be metastatic, recurrent, or has failed two rounds of treatment and is rapidly spreading. “We ended Vietnam! We accomplished Civil Rights! We brought down Russia! We can do anything!” is the mantra I envision in their minds, coupled with the Rocky theme, that echoes in the background of a pre-constructed montage set to max volume in order to drown out the harsh reality that their movie is coming to an end. There is rarely any acceptance of the inevitable because they cannot conceive of an “inevitable”. They cannot conceive of a movie without its protagonist and they cannot conceive of any existence where they are not the main lead. Rick Grimes can’t die! The end result of this is not a heroic recovery in the face of all odds with Michael Bay background explosions and epic orchestral music booming; the end result is a prolonged death in an intensive care unit often punctuated by rib-crushing rounds of CPR or withdrawal of care after extensive family discussions regarding the overall futility. And no, the patients rarely ever tell the family what they actually want in this situation outside of “do everything”. This is why the last month of life seems to be so expensive.
This extends much farther than just “end of life” care though. Given that the Boomers have been unable to be future-oriented for the entirety of their lives, the results of that present-oriented thinking are coming to light. It is no secret that more and more people are developing chronic illnesses and the truth is that most of these chronic illnesses are preventable. Or should I say, they were preventable. A lifetime of smoking, poor eating, no exercise, and recreational drug use has led to COPD, heart disease, heart failure, diabetes, high cholesterol, hypertension, and chronic hepatitis. All of these are treatable, some are curable, but it takes effort and compliance. There is a large number of patients in the Boomer population that refuse to take their medications, down-play their medical problems, or subscribe to the belief that the medical-industrial complex is in bed with the Illuminati to propagate disease in order to profit from sham treatments provided by the greedy physicians. It is this propensity towards conspiracy theories which has helped launch the anti-vax, alkaline, naturopathic, hormone craze which seems to be spreading among the over-educated.
The end result of this childish ignorance is always the same. It ends in disaster. Their disease invariably progresses, they find themselves hospitalized with increasing frequency, their frustrations build over their inability to get better, they begin to blame physicians more for “not fixing them”, and it eventually ends where all great American stories end: the ICU. And just as above, they fixate on the idea that they are “fighting”. Their families continue to proclaim that they are “fighters”. No one seems to understand that 1) this is not a fight, it’s a beating and 2) the only thing that was being fought was reality and reality always wins.
The medical community as a whole is horrible at delivering bad news. There is a reason that there are workshops dedicated to this, both for residents and full-fledged attendings, and why palliative medicine exists. Instead of accepting the reality of the situation, many physicians elect to walk down the road of willful ignorance hand in hand with their patient hoping for a cure via their “treatments”. This fantasy construct is best exemplified in the field of oncology.
Oncology is a field defined by the fact that nearly all of their patients are moribund faster than most other. This makes it an intrinsically difficult specialty. Unlike years past, when most people died relatively quickly from their disease due to limited treatments, this field has seen an explosion in research. There are multiple treatment lines for nearly every oncologic condition. In addition to the standard chemotherapy, there are therapies targeting specific receptors and signaling pathways which appear to have fewer side effects, potentially greater efficacy, but also higher cost. This means that those imminently terminal patients from the past are living for years instead of weeks. This also means that the relationship between the patient and physician becomes more complicated. The oncologist becomes familiar with their patient, their families, and is often involved in every complication involved with both their treatment and disease. The oncologist becomes the primary care physician. This benefits no one.
Excluding certain hematologic malignancies and immediately excisable solid tumors, cancer always progresses; cancer always wins. The oncologist knows this although many will refuse to openly accept that fact. Their ability to accept that reality is further compromised as they start treating patients more like friends. This is never more obvious than when a cancer patient is admitted to the ICU and the oncologist wants to be involved in their care. It is a recurring theme that while their patient is intubated, in septic shock, with renal failure, and developing DIC, they will continue to tell the family that further treatment options can be considered once the patient has recovered from their “critical illness”. Never mind the fact that this “critical illness” is a consequence of their multiple treatment failures, deconditioning, and metastatic spread of their underlying cancer, they will present it to the family as unrelated. They continue to provide hope for the family and the family holds fast to this hope. This will go on for days, weeks, even months. Maybe the patient leaves the ICU, maybe they leave the hospital, but the patient is never well enough to be a candidate for further treatment. There is always another unrealistic goal set which is invariably followed by several setbacks, repeat hospitalizations, treatment complications, deconditioning, and ultimately death. In other words, the patient is attached to the wagon of good-intentions and dragged down the road to Hell.
It is not easy giving bad news. There is no joy in it. And giving bad news to people that you have come to build a relationship with over a span of months to years, to people who may send you holiday cards or bring in cookies to the office, is even harder. It is the equivalent of giving bad news to your grandmother. It is easy to ignore reality, to focus on “potential”, and to give words of encouragement and hope. It is easy to buy into the pervasive myth in medicine that families are only open to receiving optimistic news. It is easy to watch the wagon be pulled down the road while you shout words of encouragement from afar. It is easy to be a coward.
Death and dying is a large part of my day in the critical care setting. I give bad news to families all the time. In some ways, it has become almost routine. It requires a degree of emotional intelligence, as some are more open to harsh realities than others, but I have found that every family is thankful for candid conversations. I have had many families comment that no one had been direct with them before, that they felt something was being excluded from past conversations, and that they wished prior physicians had been more direct regarding prognosis. I have never had a family become angry, violent, or demand transfer. I have never had “patient experience” get involved after delivering terrible news. I relay the information in rather black and white terms, limit the use of optimistically ambiguous terms (maybe, possibly, hopefully), and often times offer my opinion regarding the situation if the family is interested. Despite the medical communities push to destroy every vestige of paternalism, many families are comforted by physician recommendations against leaving their eighty-year-old father on life-support indefinitely. Sadly though, too many physicians are unwilling to have these candid conversations, due to their own discomfort, and the cycle continues until the wheels fall off.
These are not the only reasons for the perpetuation of futile care. There is a myriad of factors. But generational narcissism and physician cowardice are two of the dominant factors. The former can only be cured by tincture of time, but the latter can be improved upon today. Because whether or not physicians want to have the conversation, it will need to happen. We can decide to have it on our own terms or we can wait for the government to indirectly force our hand.
The fight will end somehow.