Healthcare Debates: Death with Dignity

Death with Dignity is known by many names including assisted death, physician-assisted death, and medical aid in dying. Regardless the terminology used, the concept of Death with Dignity is fairly simple: when confronted with a terminal diagnosis where a physician predicts an inevitable death within six months, a mentally competent patient has the right to request physician assistance to hasten this impending end.

Slightly different from euthanasia, where a doctor is the agent in hastening the end of a patient’s life, Death with Dignity statutes allow patients to access medication that they self-administer. The idea fueling medical aid in dying is that instead of allowing the disease to dictate the conditions of their final moments in this life, the person can die on their own terms, with their dignity intact, and often at home.

Although the concept of Death with Dignity may be simple, the conversation around assisted death is not. Even though we currently live an era where 60 percent of adults in the U.S. live with chronic diseases and 42 percent live with more than one chronic disease—many of which become terminal—death is a notoriously taboo subject for Americans. In fact, 69 percent of people report they avoid confronting the subject of death of completely and only 17 percent report having end-of-life care conversations with their physicians. In this deafening silence, it is difficult to discern a cultural consensus on whether Death with Dignity is the right direction for our terminally ill compatriots, or the right choice for healthcare.

Despite the lack of cultural consensus, Death with Dignity is legal in eight states and 19 states are considering Death with Dignity statutes. For citizens of these states, cultivating an understanding of the different views is important for discussions about preferences for end-of-life care with loved ones and healthcare practitioners.

Keep reading to learn more about the differing views on Death with Dignity statutes in the U.S.

“I’m sorry, but based on how far your disease has advanced, the fact that it continues to progress, and the reality that we have exhausted all treatment options, this disease is going to take your life.”

When a healthcare practitioner utters these words, a patient’s medical care begins to transition from extension-of-life-care to end-of-life care—a process that can last anywhere from months to years. Where extension-of-life care focuses on cures and treatment, end-of-life care focuses on relief from the symptoms and the stress of the illness (palliative care), attending to the emotional and spiritual needs of a patient (hospice), and considering the patient’s wishes for the final days of their existence (end-of-life planning).

Opponents of medical aid in dying assert that palliative care is enough to relieve the pain and suffering of terminally ill patients and they fear that widespread availability of Death with Dignity statutes will result in diminished quality of palliative care or reduced or eliminated availability of palliative care for terminally ill patients who do not wish to hasten their deaths.

Some opponents cite the availability of palliative care in the Netherlands in the early 2000s as an example of this, stating that the only options available to terminally ill patients were euthanasia or enduring pain because palliative care was almost non existent at the time. (Current evidence shows that the availability of palliative care in the Netherlands has greatly increased.)

Proponents of the expansion of Death with Dignity assert that the statutes do not eliminate or reduce the quality of palliative care. Rather, advocates frame Death with Dignity as a part of palliative care and assert that the inclusion actually improves options in the end-of-life care continuum—especially for those where palliation isn’t effective. In Oregon and California—two states where assisted death is legal—this is evident in the fact that most patients who elected to hasten their deaths were enrolled in hospice or considered palliative care before they elected to use the assisted death laws.

A part of end-of-life planning is considering whether one wants to keep fighting, despite the terminal diagnosis. Opponents to death with dignity statutes worry that in a healthcare landscape where insurance companies have a great deal of power over whether or not patients receive coverage for treatment, people will be forced to choose death, even when they don’t truly want it. There have been instances where insurance companies have denied expensive life-extending treatment, but have approved coverage for life-ending medications. People who wish to stem the spread of assisted death want to ensure that people’s end-of-life choices are not dictated by concerns over cost-saving, nor by the decision of an insurance administrator.

Proponents of Death with Dignity assert that opponents misrepresent insurance company coercion. Advocates argue that insurance companies often deny and delay treatment for cost reasons as a matter of practice, but aren’t doing so specifically because death-hastening treatments are available; they deny and delay because that is simply how many insurance companies operate. In addition, those who support Death with Dignity argue that insurance companies are not recommending patients Death with Dignity medication upon denial of other treatments.

According to a 2017 report by the Kaiser Family Foundation (KFF), people in the U.S. want agency in terms of end-of-life care. By illustration, 87 percent of respondents believe that patients and family should have a greater say in treatment options for seriously ill patients; 49 percent believe that patients have too little control over decisions regarding their own medical care at the end of life; and a combined 85 percent of respondents rated that having their wishes for medical care surrounding their own death respected was either “extremely important” or “very important.” Whether or not Death with Dignity statutes provide this choice is a matter of perspective.

Proponents of Death with Dignity statutes demonstrate that patients in states where medical aid in dying is legal tend to be more informed about their options for care at the end of life. In California, speaking about the End of Life Option Act (EOLOA) with a provider—even if the patient didn’t choose to access the option—led to more comprehensive provider-patient conversations regarding the patient’s wishes for their end-of-life care.

Providers across the state of California report that, following the passage of EOLOA, more patients are discussing end-of-life options than before and patient needs are being better addressed as a result. In addition, proponents of medical aid in dying report that the option to qualify for death-hastening medicine in the face of the failure or inadequacy of palliative care gives patients more control over their end-of-life decisions.

Opponents of Death with Dignity worry that the statutes may take hastening death down a slippery slope from empowering end-of-life choice to an unspoken, spoken, or coercive duty to die. In addition to the fear of insurance-based coercion on choice as discussed above, skeptics of Death with Dignity fear that there will be unscrupulous doctors, family members, or cultural attitude shifts that result in pressure on terminally ill patients to choose the death-hastening medicine over treatment or palliative care in a sense of duty to relieve the healthcare system, the family, and/or society of the burden of their end-of-life care.

In other words, opponents argue that while Death with Dignity appears to be an additional choice on the surface level, the actuality is that it will force dying patients to choose against their own wishes to appease others out of obligation or fear.

Those who oppose Death with Dignity statutes also feel that this slippery slope into “death as duty” will have a far reaching negative impact for people living with disabilities.

Many people living with disabilities report having the value of their lives dismissed on a regular basis, and experience covert messaging that they should unburden their families and society. Those who advocate against Death with Dignity worry that this current experience will become overt and those with disabilities will be openly pressured to choose death—especially those whose disabilities are severe and consistently classified as terminal.

In addition, those who oppose Death with Dignity on the basis of protecting people with disabilities cite cost-of-care as a concern. Ongoing treatment for disabilities comes with a cost that is higher than death, and opponents fear this could also lead to undue pressure on those with disabilities to end their own lives.

Death with Dignity supporters disagree that the statutes lead to coercion or discrimination. In Oregon, for example, advocates point out there is specific language in the legislation stating the following: “No person shall qualify under the provisions of [the Oregon Death with Dignity Act] solely because of age or disability.” In addition, the laws state that the process to obtain life-hastening drugs must be initiated voluntarily by a patient who is determined to be terminally ill and the medication must be self-administered.

While the laws themselves don’t prevent a doctor or loved one from coercing someone with a terminal disability to initiate the process, advocates assert that is no evidence in the three decades of the existence of Death with Dignity laws that these types of abuses or coercions are happening.

Although not always, those who oppose Death with Dignity do so from a moralistic perspective, citing that medically assisted death cheapens the value of life.

Some opponents cite religious teachings as the basis for this opposition, saying that taking one’s own life is against the teachings and will of various deities. Other opponents to medical aid in dying say that that statutes will create a social landscape in which suicide becomes an acceptable standard by which to handle pain and suffering. They fear that the legalization of physician-assisted death on a grand scale will encourage people to take their own lives for pain and suffering that isn’t terminal.

Advocates for physician-aided death point out that many people choose lethal medication specifically because their lives are becoming less autonomous and dignified and they no longer enjoy being alive. The choice to have the prescription—even if a terminal patient chooses not to take it—adds value by providing a sense of empowerment and control over one’s fate in a time when loss of control is often the norm. In addition, proponents of assisted death believe that, in some circumstances, death is a more compassionate option than having to live in a state of constant suffering.

As the U.S. continues on its march to expand access to physician-assisted death through the murky waters of oppositional viewpoints, one thing is clear: if Death with Dignity statutes become widely adopted, each of us will have to assess how we’d like our lives to end in the face of terminal illness. We will have to discuss our thoughts and feelings with our loved ones and caretakers, and ensure that our individual viewpoint on what it means to die with dignity is heard and understood.