Patient Care and Patient Autonomy: A Balancing Act
Patient Care and Patient Autonomy: A Balancing Act
The mere mention of an intensive care unit (ICU) typically conjures up desperate images of patients gasping for air, splayed out on gurneys, intravenous lines dangling at their sides, the steady beep of an electrocardiogram machine in the background suddenly flatlining, followed by the frenetic rush of doctors and nurses to save the patient using every possible tool and their disposal. No measure is deemed to be too much in the valiant, all-out effort to save a patient’s life. “All hands on deck,” a fictional doctor may shout to her team. “Give it all you’ve got!”
In reality, however, saving the life of a patient in the ICU is rarely the frenzied, pull-out-all-the-stops assault on death portrayed by Hollywood. In fact, the efforts undertaken in the ICU to save the life of a patient is often the result of advance planning and a careful balancing act between a physician’s professional (and deeply human) instinct to save a life, however temporarily, and the patient’s personal preferences as to what efforts should and should not be made to beat back a natural death at a time when the patient is unable to articulate those wishes.
A series of protocols have sprung up over the years to give effect to the competing societal priorities involved in protecting patients from unnecessary or preventable deaths while also respecting their freedom of choice in deciding which life-sustaining measures, if any, should be used on them when all hope of recovery has disappeared. These protocols are designed to protect a patient’s expectations of what each life-sustaining measure might accomplish while fully informing her of the possible side effects of each one – and, if all else fails, to introduce palliative measures that are available to make the patient as comfortable as possible as life-support measures are removed and the end of life is allowed to follow its natural course. Those palliative measures can themselves have negative side effects, so their administration also requires its own careful balancing act.
At one extreme of these protocols is what is called a do-not-resuscitate (DNR) or do-not-attempt-resuscitation (DNAR) order, which generally means the withholding of cardiopulmonary resuscitation (CPR) in the event that a patient suffers sudden cardiopulmonary arrest.[1] When a patient chooses this option, it means she has chosen to allow natural death to occur if her heart has stopped beating or she has stopped breathing. On the other extreme is what is known as “Full Code,” which is shorthand for the entire range of CPR methods that may be used to keep a patient alive when either of these life-threatening situations arises.[2]
Full Code measures include closed chest compressions, tracheal intubation and ventilation, and cardiac stimulation through electrical or pharmacological means under the standards of Advanced Cardiac Life Support (ACLS).[3] None of these measures is exclusive, and they are usually given in concert with each other. For example, if a patient is undergoing chest compressions, the patient may go into shock and require medications such as epinephrine or amiodarone to reverse cardiac arrest. A patient who arrives at the hospital with a traumatic condition but is otherwise healthy may well benefit from these measures and therefore is likely to be receptive to them. In contrast, a patient who is suffering from pancreatic cancer or liver disease is unlikely to benefit from CPR or ACLS measures and therefore may decide against having these measures performed on them.
Intubation is another type of “Full Code” treatment that a patient may choose to forego in a life-threatening situation. Intubation involves the insertion of a breathing tube down a patient’s throat to enable the patient to breathe when she is unable to do so for herself or when her airways have otherwise been severely impacted by her neurological condition. Intubation is not a simple or painless process. When the patient is unstable, intubation may require sedating her with medications to minimize her natural physical resistance to such an invasive procedure, and sometimes even requires paralyzing the patient temporarily until the procedure is complete.[4] The process of inserting the tube can lead to dangerous levels of low blood pressure (hypotension); the leakage of food, liquids, or other matter into the airway or lungs (pulmonary aspiration); and, if the tube is inserted too far, endobronchial intubation, which can worsen a patient’s hypoxemia.[5]
The least invasive measure encompassed by the term “Full Code” is the administration of vasopressors, a family of medications that raise a patient’s blood pressure and can help prevent the organ damage and even death that can result from severely low blood pressure in people who are in critical condition. Vasopressors are frequently used with patients who go into shock or are undergoing surgery.[6] Epinephrine, norepinephrine, and dopamine are just a few of the medications that are used as vasopressors. Physicians generally prefer to administer these medications through central lines because if they are administrated peripherally, there is a greater risk of vasopressor extravasation, or infiltration. This can occur if an infused drug leaks out of the blood vessel into the surrounding tissue, which can lead to tissue damage, reduced blood flow to the heart (ischemia), and even necrosis of the affected area.[7]
Given the variety of emergencies that could arise, the variety of Full Code measures available to deal with those emergencies, and the variety of side effects that could result from the use of these measures, it is incumbent on physicians to discuss these different possible scenarios with their patients to obtain the patient’s informed consent on what measures she is comfortable having doctors pursue. For example, a doctor might inform a patient that if her heart stops, one option is to start chest compressions to try to get her heart beating again, but that this would likely require pumping her her chest one or two inches deep and might result in fractured ribs and possibly even a collapsed lung (pneumothorax), which might require inserting a chest tube to remove air, blood, or other fluid from around the lung.[8] The doctor might then go on to inform the patient about the various medications and shock treatments that would be available to get their hearts beating again, always being careful to point out the potential side effects and to emphasize that these measures are designed only to overcome the emergency and not necessarily to put the patient in a better position, health-wise, than they were in before the emergency.
Other potential scenarios for a doctor to go over with the patient are whether she would oppose having a tube inserted into her lungs and being placed on a ventilator, or other forms of life support that each carries its own potential side effects. For example, among the milder side effects of being placed on a ventilator would be an inability to talk and the possibility of being kept sedated. If the issue is severe low blood pressure, the patient could be asked whether she would welcome the insertion of special-access IV lines to facilitate the administration of medications to increase her blood pressure.
Because life-threatening emergencies require swift action to be effective, doctors and hospital staff will usually not have the luxury of contact a patient’s family members to ask these questions and determine which procedures would be acceptable to the patient and which would not. These conversations therefore must be had before a crisis strikes, if possible.
There is an established terminology used by hospitals to reflect the outcome of these doctor-patient discussions so that, in the event of an emergency, the responding physicians are aware of that patient’s (or her family’s, if the patient cannot speak for herself) preferences when it comes to life-saving measures. If a patient has expressed a desire not to have any form of CPR performed on her in the event she stops breathing or her heart stops, she is said to have opted for “DNR/DNI,” or “do not resuscitate/do not intubate.”[9] If, on the other hand, she is receptive to some or all of the CPR methods described briefly above, then her medical chart should be coded to reflect those preferences.
How would a doctor broach these issues with a patient (or patient’s family) who is admitted into the intensive care unit? One useful way may be to analogize human life to a table and the human body’s organ systems to the legs of that table. In this example, one leg might represent the heart, another the lungs, a third the immune system, and a fourth the kidneys. All these legs are propping up the table and thus sharing the burden of keeping the patient alive. However, if one of the legs breaks off, it puts greater stress on the other legs to keep the table upright. If two of the legs break off at the same time, of course, the weight on the remaining legs becomes even greater and may become unbearable, placing the table at risk of collapsing.
By applying one or more life-sustaining measures, it may be possible to keep the table from collapsing while the failing organ system is brought back to health. For example, if a patient’s lungs stop working, doctors might resort to intubation and put the patient on a ventilator to keep that leg of the table from breaking off entirely while the lungs mend themselves. If the patient’s heart stops beating, doctors might administer vasopressors or chest compressions to keep that leg of the table from buckling until the heart resumes functioning. With the kidneys, hemodialysis might help keep the table standing. And so on. The idea is that, through supportive care and the body’s natural regeneration process – which is stronger in younger patients than in older ones, of course – the damaged table legs can heal themselves and the patient can be weaned off life-support measures accordingly, without the table ever coming crashing down.
The patient population of a hospital’s intensive care unit can generally be divided into three categories. On one extreme are those for whom the legs of the table heal quickly, allowing doctors to take them off each form of life support until the table stands on its own again and the patient can be discharged, at least from the ICU. On the other extreme are patients for whom multiple legs of the table continue to fall even as measures are taken to prop them up, until the table collapses and the patient dies.
In the middle category are those patients who remain in a staying pattern where the table legs are not healing themselves but the table itself doesn’t collapse, either. In those situations, life support mechanisms are capable of keeping the patients alive for at least some time, and in some cases long periods of time, without any significant improvement in the patient’s condition. This situation often necessitates a difficult discussion with the patient’s family about how long they want their loved one to remain captive to these life-sustaining measures and kept, in effect, artificially alive. Ideally, the patient will have had a prior discussion with the doctor or her family about what she would like done if these circumstances were to arise. If not, the family will have to make a decision after being fully informed by doctors about the risks and benefits of continuing with life support.
Once that point is reached, where all possible measures have been taken and the best that can be hoped for is to keep the patient on life support indefinitely, doctors will need to have a very different, though no less delicate, conversation with the patient’s family regarding palliative care.[10] The problem is this: The longer a patient remains on various life-support systems, the greater the odds that she will develop severe side effects from those systems. For example, if the patient is on vasopressors to keep her blood pressure up, the more likely she is to suffer tissue breakdown and develop necrosis in the extremities.[11] The longer she is on a ventilator, the greater the risk she will come down with ventilator-associated pneumonia (VAP).[12] The longer she is on hemodialysis, the greater the risk of infections in the dialysis catheters.[13] And the prolonged use of antibiotics can cause spontaneous bleeding resulting from a low blood platelet count (thrombocytopenia) or elevated liver enzymes, indicating inflammation or damage to cells in the liver.[14] The patient is alive – the table is still standing – but the legs are beyond repair and there is no hope that they will ever stand on their own again.
At this point, the priority switches from saving the patient’s life to ensuring that she is given the most painless and dignified death possible. Just because a patient is on life support does not mean that she is incapable of suffering. For example, removing an endotracheal tube from a patient’s throat can cause shortness of breath and other forms of discomfort.[15] This is why a doctor’s discussion with a patient before this point is reached should touch on the availability of palliative care, which would shift the priority away from keeping the table standing while the legs have a chance to heal, and focusing instead on ensuring that the patient suffers the least amount of pain and discomfort, even if the medications needed to do that carry their own negative side effects such as a drop in blood pressure.[16]
Because the priority is to relieve the patient’s pain and no longer to prevent her organ systems from shutting down, doctors will put the patient on pain medications, such as a morphine drip or fentanyl drip, and then start removing the life-support systems in a gradual fashion, always keeping an eye on the patient’s heart rate, respiratory rate, facial expressions, and other objective indicia to make sure the patient is not suffering from unnecessary pain or discomfort in the process.[17] In the event the patient is in noticeable pain, doctors can pause the removal of life-support systems to increase the pain medication until the outward signs of pain and distress go away. In the case of a ventilator, this process continues until the ventilator has been shut down and the tube removed from the patient’s throat.
It’s possible that the patient will die upon the removal of the tracheal tube, or that the patient will live for some time after its removal. Either result is beside the point. The idea is to ensure the patient’s comfort while she is weaned off life support.
As the above discussion illustrates, our society places a high value on patient autonomy when it comes to choosing the life-sustaining measures that are employed when their organ systems cease to function on their own. Physicians with experience in the curative and/or palliative care of patients know that strong communication is an integral part of providing effective, and ethical, care to a patient at the end of her life. Each patient should be allowed to decide for herself whether, when she reaches that point, she wants people pounding on her chest, shocking her heart, or jamming an endotracheal tube down her throat. It is one of a physician’s highest duties to ascertain and respect what is undoubtedly one of the most important decisions of a person’s life – and death.
[1]Joseph L. Breault, MD, ScD, MPH, CIP (Winter 2011) “DNR, DNAR, or AND? Is Language Important?,” Oschner J, 11(4): 302-306.
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[2]James Downar, MDCM, MHSc, FRCP(C), et al. (June 2011) “Why Do Patients Agree to a ‘Do Not Resuscitate’ or ‘Full Code’ Order? Perspectives of Medical Inpatients,” Journal of General Internal Medicine, 26(6): 582-587.
[3]Ashish R. Panchal, et al. (Nov. 14, 2019) “2019 American Heart Association Focused Update on Advanced Cardiovascular Life Support: Use of Advanced Airways, Vasopressors, and Extracorporeal Cardiopulmonary Resuscitation During Cardiac Arrest: An Update to the American Heart Association Guidelines for Cardiopulmonary Resuscitation and Emergency Cardiovascular Care,” Vol. 140, No. 24, e881-e-894.
[4]Lori Clukey, RN, PhD, PsyD,, CNS, et al. (May 1, 2014) “Discovery of Unexpected Pain in Intubated and Sedated Patients,” Am J Crit Care 23 (3): 216-220.
[5]Jigeeshu V. Divatia, et al. (Sept-Oct 2011) “Tracheal intubation in the ICU: Life saving or life threatening?,” Indian J Anaesth 55(5): 470-475.
[6]Philip Panagiotis Manolopoulos, et al. (April 10, 2020) “Current use and advances in vasopressors and inotropes support in shock,” J Emerg Crit Care Med, Vol. 4.
[7]Michelle Plum, PharmD, et al. (Sep. 2017) “Alternative Pharmacological Management of Vasopressor Extravasation in the Absence of Phentolamine,” P T, 42(9): 581-585, 592.
[8]Seo Jin Jang, MD, et al. (August 14, 2020) “Computed tomographic findings of chest injuries following cardiopulmonary resuscitation: More complications for prolonged chest compressions?,” Medicine, Vol. 99, Iss. 33, p. e21685.
[9]Josephine Vranick, et al. (Sept. 30, 2020) “Do Not Resuscitate,” StatPearls Publishing.
[10]Betty R. Ferrell, et al. (Dec. 2018) “National Consensus Project Clinical Practice Guidelines for Quality Palliative Care Guidelines, 4th Edition,” J Palliat Med., 21(12): 1684-1689.
[11]Michelle Plum, PharmD, et al. (Sep. 2017) “Alternative Pharmacological Management of Vasopressor Extravasation in the Absence of Phentolamine,” P T, 42(9): 581-585, 592.
[12]Laurent Papazian, et al. (Mar. 2020) “Ventilator-associated pneumonia in adults: a narrative review,” Intensive Care Med., 10: 1-19.
[13]Yaser Al-Solaiman, et al. (Sep.2011) “The Spectrum of Infections in Catheter-Dependent Hemodialysis Patients,” Clin J. Am Soc Nephrol, 6(9): 2247-2252.
[14]Matthew T. Rondina, MD, et al. (April 2010) “Drug-Induced Thrombocytopenia for the Hospitalist Physician with a Focus on Heparin-lnduced Thrombocytopenia,” Hosp Pract (1995), 38(2): 29-28.
[15]Richard M. Cooper (May 15, 2009) “Extubation and Changing Endotracheal Tubes,” Benumof’s Airway Management, 2007: 1146-1180.
[16]Robin B. Rome, MSN, FNP-C, et al. (Winter 2011) “The Role of Palliative Care at the End of Life,” Ochsner J., 11(4): 348-352.
[17]Richard J. Ackermann, MD (Oct. 1, 2000) “Withholding and Withdrawing Life-Sustaining Treatment,” Am Fam Physician, 62(7): 1555-1560.
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