For more reasons than I wish to enumerate here, the discussions of death and dying that physicians are having with patients at the end of life are so simplistic, myopic, confused, and lacking in nuance that they resemble a theater of the absurd.
The implications for individual patient care and health care in general are weighty indeed, but I will defer their statement to other commentators or other posts. Herein, I review some of the absurd elements of the approaches I often see used to broach the topic of decision making at the end of life, and offer some (admittedly vague) suggestions about how this sorry state of affairs can be improved upon.
Let us begin with what has been called the "Chinese Menu" for "Code Status". I prefer to call it a Sushi Menu. I should pause to explain terminology. When a patient dies in the hospital (we have various euphemisms for death in the hospital - "passing", "coding", "full arrest" [curiously, there is no "partial arrest"], etc. - but the key point which we must confront directly - not tangentially - is that people do eventually die) a "Code Blue" is called overhead. Code blue called overhead on the hospital PA system activates a team of various hospital employees of sundry disciplines, who respond and attempt to resuscitate him. A patient's "Code Status" is medical jargon that signals to that team what the patient wants them to do in the event that they die in the hospital. In the simplest of its various forms Code Status is dichotomized to either "Full Code" meaning the patient has directed the team to "do everything" that is reasonable to resuscitate him; or to "DNR/DNI" which means Do Not Resuscitate/Do Not Intubate - that is, do not intervene and allow the patient to die naturally in the event that they stop breathing or their heart stops. Why would a patient choose to die naturally rather than be resuscitated? Because often being resuscitated forestalls death only for a short time during which the patient cannot communicate or get his affairs in order - time that has little value and may increase the net burden of suffering, all of it in the hospital in a state of questionable consciousness, connected to machines and being poked and prodded and "run through the ringer" until death inevitably intervenes. As a sage friend once said "Death is not the enemy." Indeed it is not. Suffering is.
There are various interventions that may occur during an attempted resuscitation and immediately after a successful resuscitation in the ICU (intensive care unit.) These include CPR with chest compressions, electrical defibrillation to shock the heart back to a normal rhythm, various medications that affect the heartbeat and blood pressure, the use of various apparatuses to get air into the lungs, etc. The Sushi Menu asks patients to check which parts of the interventions used during a resuscitation they wish to be used, if indicated, during their resuscitation, and which they do not want to be used . Here is a representative Sushi Menu - some are more complicated than this one, some are simpler.
A menu such as this is often presented to a seriously ill hospitalized patient along with a brief verbal explanation of what each component entails in isolation, and the patient and his/her family is left to make their selections. Of course, the provision of this Sushi Menu tacitly suggests that the individual choices and their combinations are all reasonable and even likely to be effective.
The fact is that most people don't really know enough about - nor can they hope to know enough about - resuscitation to understand the specifics of what all these interventions are and how they may contribute to the resuscitation process. And this highly curious state of affairs leads to some unfortunate ironies in the hospital.
Does a person considering his possible death think to himself, "well, I'll take that CPR stuff, but I don't want shocked, no way, I was shocked when I was a kid on the electric fence and I don't want that ever again." And if he does think through the problem in this fashion, is it reasonable for us to allow him to do so? He will be unconscious and likely have no recollection whatsoever of the resuscitation process. Here the end and the means have been turned on their heads. With Code Status, what matters is whether we acheive - or can achieve - a desired end, a goal, rather than the means we employ to achieve it. The Sushi Menu implies that the selection of the means used to acheive that end can have some meaning and relevance to the patient. It would be like asking a patient before a cholecystectomy whether he wants electrocautery or not; or sutures versus staples. The patient is not well enough informed to make choices about the means to the end of a given surgery such as cholecystectomy. The same is true with resuscitation.
The Sushi Menu can, and often does lead to choice combinations that informed healthcare providers cannot understand or think ludicrous, such as the choice to be reususcitated with CPR but not to be intubated - often, one cannot be expected to be effective without the other - or a combination of choices seems trivial or contrived, such as the choice to not have vasopressors (medications to raise blood pressure) or not to have vasodilators (medications to lower it.) These medications cause no pain or other notable effect. Why would any reasonably informed person choose to forego them? And if no such person would, why is the selection offered? Who is responsbile for this Sushi Menu?
(I have my suspicions - advocates of patient autonomy who fail to recognize understanding as a prerequisite for exercise of autonomy; proponents of brainstorming at committee meetings; and busybodies who are themselves insufficiently informed to have been involved in the formulation of the Sushi Menu. But I digress.)
Sometimes, an informed doctor reviews the Sushi Menu or the topic of death and dying in general with the patient. And to observers of that conversation, something odd becomes apparent - doctors and nurses are often not agnostic about which choices and combinations on the Sushi Menu are reasonable for a patient. When the discussion takes place with an elderly patient with metastatic colon cancer who has been hospitalized for a month and who has not walked or eaten in weeks, CPR is described as something painful and unkind, which "will break his ribs" and cause significant discomfort. Obviously, the physician is steering the patient away from CPR and "full code", but the conversation is still misguided and ill-conceived. It's not that broken ribs are so bad, or CPR so painful - would you rather crash a car and die or crash a car and break some ribs? - it's that an elderly person with metastatic colon cancer and poor functional status on a downward trajectory in the hospital for a month is probably not ever going to leave the hospital or a nursing home if s/he has a cardiac arrest. The rub is again in the end, not the means. And the end is not whether the heart is beating or not. It is whether there is any reasonable expectation of a quality of life with independence outside of a nursing home, should the resuscitation be successful.
(The failure to be forward looking and understand and communicate prognosis leads to the opposite kind of irrational behavior as well - younger people with reversible diseases choosing to be DNR/DNI because of a poor understanding of their expected disease course, such as the ICU RN who chose to have "DNR" tattooed on her chest after a diagnosis of coronary disease. She incorrectly believed that resuscitating her would lead to the same level of debility and dependence as the patients whom she was accustomed to caring for in the ICU were after resuscitations for end stage disease.)
The offering up of the Sushi Menu thusly and mistakenly implies to patients and families that the resuscitation is likely to be effective and to lead to an acceptable outcome, and that the important task of the patient is simply to decide what path, what interventions s/he wants to be used in the pursuit of that end. As such, it does a great disservice to all involved, leading the physician to oftentimes resort to talking the patient out of the choices s/he has made by describing the means as unsavory (breaking ribs!), when indeed it is the end that is unsavory - a prolonged death on life support. What a sorry state of affairs!
How do we get out of it? First, dispense with the Sushi Menu. It misdirects the conversation. Instead, a physician must, in any hospital encounter with a patient, assess the patient's condition with an emphasis on age, comorbidities, and functional status, and make a determination or prognostication about the likely course of the patient in various eventualities including a cardiorespiratory arrest or Code Blue and then explain this to the patient. This requires some skill and experience, good communication abilities, appreciation for nuance, forward thinking, courage of convictions and willingness to confront and address the topic of death directly and candidly. The focus should be on the likely end that will be achieved through resuscitation rather than the means to that end. This conversation will take far more time than the offering up of the Menu, but will achieve better outcomes, avoid disappointment, and prevent situations where healthcare providers and families are left wondering "How did we get here? Why have we been in the ICU for 2 weeks when there is little hope of escape that does not involve a PEG and a Trach and a nursing home or LTAC transfer from which there is also little hope of escape except through death? And if death is the only real escape, then what have we been doing for these two weeks?"
The problem is that this conversation is difficult and may involve emotional heaviness, shedding of tears, conflict of various sorts, expenditure of time, multiple family meetings, and so on. But the anticipated difficulty does not absolve healthcare providers of the responsibility of having it, and in the end will be well worth the time and stress of the investment.
So please - cease and desist with the "breaking of ribs" nonsense. Stop offering choices that don't make sense out of context. Provide the context. Fulfill your duty as a physician. Help guide patients and families through one of the most difficult and challenging of universal human experiences. Help people be able to die, when that times comes, with peace and dignity.
Communication is everything in these situations and is the one thing which seems to be completely lacking from senior consultants. I don't think age should come into the decision making process at all - only current health status. Recently watched a relative in their 90s being left to die with what appeared to be no treatment at all - having been told that he had an infection but doctors were unwilling to treat him with antibiotics as he might get cdiff and be 'much more unwell'. When he finally died after 3 days in hospital the death certificate gave cause of death as 'old age'. The family has been left feeling that he was not treated due to his age and maybe even that the hospital did not want to spoil their infection stats. There are a lot of problems with end of life care at the moment and most of it is probably due to poor communication skills.ReplyDelete