People should have choices as their life is ending

December 26, 2017

The following op-ed appeared on on December 26, 2017:

Before my son was born 17 years ago, I researched the type of childbirth I wanted. My husband and I discussed the options.

We wrote a birth plan. We reviewed it with our medical team. And our medical team made decisions with our preferences in mind.

The result? A healthy baby boy was born with minimal interventions.

Afterward, the doctor noted that thanks to clearly stating our childbirth preferences, I had successfully avoided the default protocol of a vacuum extraction when a baby’s heart rate drops. Our planning was fortunate because the umbilical cord was wrapped around my son’s neck, so a vacuum extraction would have failed.

The best-case scenario was a C-section. The worst-case scenario was unthinkable.

The solution that ended up working? I was asked to stand. Standing shifted my son’s position, and the medical team was immediately able to identify the problem. They quickly freed my son’s neck from the umbilical cord that could have strangled him. He was born shortly thereafter, healthy and happy – actually, really healthy and screaming.

I had a very different childbirth experience with my son than my mother had birthing me 30 years earlier. She had no plan. She had no options. She had no support. She was alone.

Strapped to a bed, doped up on drugs, she remembers nothing. Over that 30-year period, an enlightened generation of women became adamant about shaping a much different experience of options, with partners heavily involved, and a collaborative relationship with doctors around every aspect of pregnancy.

The pressure from women and their partners was so intense that the system yielded. There was a seismic shift from a paternalistic health system that completely discounted the preferences of pregnant women and fathers to a patient-driven system that recognized a patient’s values should guide medical decisions.

Imagine if we could have that same type of transformation for the end of life? If a person could write their own plan, decide when and where they die, decide who they want with them when they die – and determine how much pain they’re willing to endure, even if that means accelerating their time of death.

Imagine if the default mode at the end of life was for doctors to assume the patient’s values are paramount. That future is possible. In fact, I would suggest that we are in the midst of this transformation. The evidence is there.

On Dec. 2, the Massachusetts Medical Society became the ninth state medical society, along the District of Columbia, to drop its opposition to medical aid in dying and adopt a neutral stance on the issue. All but one has taken this stance since 2015.

This humane medical practice allows a mentally capable, terminally ill adult with six months or fewer to live the option to request a prescription for medication to die peacefully in their sleep if their suffering becomes unbearable. The American public has embraced medical aid in dying because it is a hallmark of patient-directed care.

It clearly signifies that the patient is in charge of their end-of-life care, including how they die.

For decades, medical societies have strongly opposed the passage of medical aid-in-dying laws. In fact, they served as a primary obstacle to securing the authorization of this humane end-of-life care option.

In June 2015, the California Medical Association dropped its 28-year opposition to medical aid in dying and adopted a neutral position. Since that time, seven other medical societies have followed suit: Colorado, the District of Columbia, Maine, Maryland, Minnesota, Nevada, Vermont and now Massachusetts.

Importantly, the changed positions by the medical societies in California, Colorado and the District of Columbia paved the way shortly after for the authorization of the practice in those jurisdictions.

This trend is an indication that state medical societies are catching up to the values and expectations of their patients and physicians. According to dozens of surveys, about seven out of ten adults support medical aid in dying.

Physicians support this end-of-life option by nearly 2-to-1 (57% to 29%), according a Medscape survey last fall of more than 7,500 doctors from over 25 specialties. Furthermore, in newly authorized jurisdictions, such as California in 2015 and Colorado in 2016, the vast majority of secular health systems are responding to consumer demand and adopting policies that support a patient’s desire for medical aid in dying.

In the same way that childbirth plans have transformed the relationship between doctor and patient for the entire pregnancy to a patient-directed relationship, the adoption of supportive medical aid-in-dying policies changes the relationship between doctor and patient to a patient-directed relationship for all end-of-life care decisions.

This seismic shift indicates that in the not-too-distant future, and hopefully within my lifetime, the medical system will afford patients the same type of respect at the end of life that we now have at the beginning of life. This change will once again come because patients themselves are demanding it.

Kim Callinan is chief program officer for Compassion & Choices, the largest national organization devoted exclusively to patient-driven end-of-life care.

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