A “Wrongful Life:” What’s Wrong with Being Alive?

Most of us do not think there is anything wrong with being alive. On the contrary, we tend to think there is an awful lot right about it: after all, it is our preferred state of existence. But for those who are kept alive against their expressed wishes to be allowed to die, life is wrong.

Now these patients and their families are doing something about it: they are filing lawsuits against hospitals and doctors for being harmed. The harm they are claiming is that they are kept alive when they should be dead, because their wishes to be allowed to die were ignored. They are suing hospitals and doctors because of the harm of wrongful life.

While all of us can understand wrongful death lawsuits, in which someone who wanted to live died because of claimed medical negligence, “wrongful life” suits may seem perplexing at first. How can being alive be harmful? In the past, courts have not considered life to be a harmful outcome. Their rationale was that you cannot reverse death, so it should be avoided. The answer as to why life can be harmful lies in the ethical distinction between non-maleficence (doing harm) and beneficence (doing good).

The ethical precept of non-maleficence requires us not to inflict “harm.” So non-maleficence demands intentionally refraining from actions that cause it. Conversely, beneficence requires us to prevent harm, to remove harm, and to promote “good.” Doctors are ethically proscribed not to do harm and ethically prescribed to do good.

So, how can saving someone’s life be non-maleficent, i.e., a “harm?” This necessitates consideration of a third medical ethic – autonomy. Autonomy means that competent and informed patients can decide what care they want and what care they don’t want – not their doctor. The patient decides what the “good” is for them, i.e., the aim that treatment should achieve and not achieve. Treating a patient to accomplish an outcome they do not see as good is harm – that is, failing to refrain from actions that harm patients. Unwanted treatment is more than unnecessary, it is harmful. The unwanted treatment at the heart of wrongful lawsuits is performing life-saving resuscitation on individuals with an expressed DNR (do not resuscitate) order.

The rise of wrongful life lawsuits has paralleled the awareness among families and patients of the harm caused by overtreatment. Too much treatment is as unethical as too little treatment. Furthermore, there is a growing sentiment that patients have a right to choose a natural death. These wrongful death suits are based on the “right to live,” but wrongful death claims are based on the “right to be allowed to die.” A growing number of wrongful life cases have involved lifesaving treatment rendered despite documentation of the patient’s wishes not to receive aggressive therapy that will prevent them from dying naturally. A patient’s decision to allow natural death to occur is a morally neutral event, and again, it is the patient’s choice, not the doctor’s.

Physicians have no right to contravene the expressed wishes of a competent patient to die naturally. These patient wishes have been traditionally expressed in the advance care directive or living will and more recently in the POLST (Physician’s Orders of Life-Sustaining Treatment) forms, also known in some states as MOLST forms. These POLST/MOLST forms are specifically designed for patients whose life expectancy is a year or less. Unlike advanced directives, POLST/MOLST forms are valid orders, marking the critical difference between the two. These POLST/MOLST orders must be followed by EMTs caring for patients in their homes and doctors caring for patients in the hospital.  

The tragic consequences of failing to honor the wishes of a patient to die naturally, either by deliberately ignoring the patient’s wishes or by being wrongly ignorant of them, are increasingly resulting in wrongful life lawsuits. Some of these harrowing stories have appeared in the lay press, such as an April 10, 2017 article in the New York Times titled “The Patients Were Saved. That’s Why They Are Suing:”–

https://www.nytimes.com/2017/04/10/health/wrongful-life-lawsuit-dnr.html?_r=0.

One of the most detailed discussions of the legal issues involved in unwanted medical treatment that results in “wrongful life” was published the spring 2017 issue of The Journal of Clinical Ethics (http://www.clinicalethics.com/TPope.html). Written by Thaddeus Pope, JD, PhD, director of the Health Law Institute at the Mitchell Hamline School of Law in Saint Paul, Minn., the piece begins by surveying the literature on what he calls “an ever-growing avalanche of unwanted medical treatment.”

His article then catalogues ongoing lawsuits in multiple states, including the July 2016 decision in the Supreme Court of Georgia that upheld a 2015 appellate judgment allowing the wrongful life case of Alicea v. Doctors Hospital of Augusta to go forward. The court clearly addressed the paramount role of a patient’s advance directive, writing that “it is the will of the patient or her designated agent, and not that of the healthcare provider, that controls.” The court did not assign liability, but remanded the case back to a lower Georgia court for adjudication.

Like wrongful death lawsuits, these lawsuits are painful experiences for everyone concerned. They involve decisions by patients, families, and physicians, along with their consequences. All who have had to make hard medical decisions know that the very best of well-meant intentions can result in the very worst of unintended outcomes. But wrongful life lawsuits are not about intentions; they are about the medical ethics that govern professional behavior and about patients’ rights.

Wrongful life lawsuits are often heartbreaking cases that impact well-meaning physicians and well-intentioned patients and families. Saving a patient who wants to live is among the noblest things doctors can do. But saving a patient who wants to be allowed to die isn’t noble, and right now, courts are deciding whether it may in fact be illegal.

Funerals alone should follow death, not lawsuits. Most tragic of all is that unwanted treatment can be avoided. If you have a living will, update it now, and if you don’t have one, get one now. If you or a loved one has a terminal disease, fill out a POLST or MOLST form with a doctor and put it on your refrigerator so it will be available when you need it. Everyone who cares for you, either with love or medicine, should have copies of these forms.

Lastly, talk a lot about death – yours or a loved one’s – to every family member and physician involved. That way, unlike the Welsh poet Dylan Thomas’s lament about his father’s dying, you or your loved one can “go gentle into that good night” – and not go intubated into the ICU.