What happens to the disabled and rare disease patients if ventilators have to be rationed?
As the number of cases of COVID-19 escalate, the much-feared shortage of medical resources, particularly ventilators, seems to be approaching fast. Should this very real threat come to pass, physicians will be in the agonizing position of needing to ration life-saving support devices. So how do physicians decide who gets a ventilator and who goes without, potentially dying?
Italy has been facing this dilemma for weeks now, and that country has chosen the utilitarian approach. In that country, clinicians’ choices must be based on the largest benefit for the largest number of people. To do this, Italian clinical guidelines state that physicians must consider comorbidities as part of the equation when allocating resources because patients with other conditions may take longer to recover than otherwise healthy patients. This same standard appears in multiple states’ Crisis Standard of Care plans. Some states go so far as naming particular conditions that make a COVID-19 victim unlikely to receive ventilator support, including intellectual disabilities, metastatic cancer and AIDS.
Theoretically, this utilitarian approach may save more lives, but it is a moral failure. Choosing which lives are more worthy of saving, instead of allocating resources on a first-come, first-serve basis is a violation of the covenant physicians enter into when they take the Hippocratic Oath.
In the modern version of the Hippocratic Oath, physicians make a promise to their future patients – to care for them holistically and compassionately. How does discriminating against a disabled patient fulfill this promise? The oath reads:
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
Overtreatment is an issue we have been struggling with in this country for many years. Many elderly or terminally ill patients spend their final days, weeks or months attached to life support machines that cannot heal them, but only prolong suffering as they crawl toward certain death. We are not advocating this approach, nor would we advocate using a ventilator on someone whose death is unavoidable. If treatment is futile for an individual, it seems obvious that lifesaving equipment should not be used. But that logic should not lead us to the belief that those with pre-existing conditions are not worth the resources. I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.
We cannot imagine how warmth, sympathy and understanding can be part of a decision to value one life over another, especially if the undervalued life is a person who already struggles with a disability, a life-limiting condition or a rare disease. Have they fought the good fight to stay healthy, to follow their treatment regimen, to work in partnership with their physician merely to be told in their hour of need that they are not worth saving?
I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.
The utilitarian approach to rationing ventilators has a practical flaw as well. We are assuming that we can accurately predict the trajectory of the illness in all patients. While we see major complications in many patients with certain comorbidities including diabetes and COPD, not all patients in high risk groups experience life-threatening complications. There is the example of a young man in London with cystic fibrosis whom everyone would expect would suffer a highly aggressive manifestation of the virus. Yet he never felt as sick as many previously healthy patients did, and returned home to convalesce. Can physicians be sure that they know how a patient will react? Can they know how long a patient will need breathing support? Or are they making educated guesses? Are we prepared to make life or death decisions based on educated guesses? I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
Choosing to give a non-disabled person ventilator support over a disabled person is horrible enough, but New York state takes it one step further. The state department of health, in their Ventilator Allocation Guidelines, submits that when a new patient arrives at a hospital whose medical history suggests that he or she would recover faster than a patient already intubated who is not improving fast enough, the ventilator be taken away from the patient using it and given to the new patient. This is the preferred course of action even though it may well lead to the first patient’s death. The physician is asked to actively take one life to save another. How is this not playing God? I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
If we accept that physicians should make these kinds of decisions, what does that say about how we value the life of a human being? The utilitarian model suggests that the value of life is simply a mathematical equation: it is acceptable to take the life of one person if we later save two. But how do we accurately value any human life? What is a value of a person to those who rely on him for financial support, or her for emotional assistance? If we take one life, what becomes of the others that person was caring for, such as children or infirm parents? Do we lose more lives as a later result of this decision? There is no calculus to determine the value of a life, which is why the only fair and equitable way to allocate ventilators is first come, first serve. A patient’s place in the queue is not attached to a valuation of their life. I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
How physicians approach ventilator allocation will both reflect and inform our values as a society. In 1977, former Vice President Hubert Humphrey, himself a healthcare provider, stated that our country must protect “those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped.” What kind of people do we want to be?
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.
Physicians are healers. Choosing which patient gets a ventilator and which patient dies is an immense burden to place on a clinician for a number of reasons. First of all, harming any patient is antithetical to their purpose. Second, in decisions revolving around a predicted outcome, there is a large margin of error, and the uncertainty they will feel regarding the accuracy of their choice will weigh on their minds. And most of all, the practice of medicine revolves around a patient-centered mindset. When a physician is treating a patient, in the moment, the patient believes that his or her well-being is topmost in the doctor’s mind, not some impersonal concept of “the greater good.” Doctors feel this obligation to the patient they are treating and violating this trust may well lead them to moral injury, psychological harm caused by betraying one’s deeply held moral code. Their feelings of moral failure will come back as crippling psychological harm that haunt their future, and we must care about the damage we are doing to those who are now risking their lives to care for us on a daily basis.