Put yourself in someone else’s shoes for a minute. Imagine you’ve just met with your doctor, and you’ve received some terrible news; you have cancer. The prognosis? Less than six months to live.
Later on, you discover for some reason or another that treatment wouldn’t help you at this stage, and you’re stuck with living out the rest of your days waiting for death.
Maybe you find the pain you experience can’t be calmed with any amount of medication. You may become bed ridden and need the support of a home aide or your own family to take care of your basic needs until the end of your life.
But what if there was an option that would let you take control of when your life ends? Maybe you decide you don’t want to place that burden on your family, and say goodbye on your own terms.
That’s what State Rep. Paul Baumbach is seeking to legalize in Delaware, joining 10 states and the District of Columbia in allowing a practice known by many names. It’s often called medical aid in dying, death with dignity, right to die or medically assisted suicide.
The terminology around the practice is itself debated, Delaware’s bill states clearly this practice wouldn’t count as suicide or assisted suicide; in part to ensure insurance companies can’t label the death as such.
Vickie George was diagnosed with Multiple Sclerosis when she was 39, and that disease has slowly paralyzed her limbs.
Before George was diagnosed, she was an avid athlete.
“I ended up playing major league Women’s Fast Pitch on the competitive level, competed with men in Racquetball, avid bicyclist, outdoor enthusiast, you can go on and on and on,” George says. “I was not a spectator in life.”
George began to discover life through a disabled lens because of her diagnosis, and founded a non-profit to help folks with disabilities access recreational programs.
While those with MS often continue to live long and productive lives, George has thought about what would happen if things turned for the worse and she faced a terminal diagnosis.
“I don’t wanna sound rude but I don’t know why there’s a discussion in our country about it at all,” George says. “It’s just a person’s individual decision. I didn’t live my life the way I do now to give up the last six months of control to someone else. That just doesn’t make sense to me. Why? Why would I do that?”
George and others say having this option available to them would give them peace of mind as they approach the end of their lives.
"I didn’t live my life the way I do now to give up the last six months of control to someone else."
Oregon was the first state in the country to pass a law allowing terminally ill individuals to end their own life. The measure was sent to the voters and just barely passed back in 1994.
The state publishes annual reports on the impact of the law, and shows since its inception, around two thirds of individuals who requested the medication ended up using it.
Baumbach says the intention of the bill isn’t to get the most people to use it.
“And I think when you humanize it and think about the individuals this affects and how having this option, whether you take it or not, just knowing that you could pursue this option so that if the pain got too much you could take advantage of it and self administer it,” Baumbach says. “That can give you the peace of mind to not take it — and that’s fine, that’s a great outcome.”
Baumbach has been trying to get this legislation passed for several years. He says close to nobody would co-sponsor the bill the first time he introduced it; now it has the support of major party leaders in both chambers.
He says the difficulty has been getting lawmakers to understand the support behind his proposal. A 2020 poll conducted by Compassion and Choices, a group supporting this legislation, found that over 70 percent of Delaware voters would back a proposal allowing terminally ill patients to end their own lives.
The poll shows that majority across party lines, and matches a similar poll conducted by Gallup in 2018, showing 72 percent of Americans support medically assisted suicide.
However, there is opposition to the practice. Daniese McMullen-Powell lives in Christiana, and is a former chair of the State Council for Persons with Disabilities.
McMullen-Powell was diagnosed with Polio in the late 40’s, just years before the Polio vaccine was introduced. She got involved in disability advocacy later in life, and became involved in the opposition to Medically Assisted Suicide after meeting Diane Coleman, the founder of Not Dead Yet, a group that opposes the practice.
“Now the last couple of years is really ticking me off,” says McMullen-Powell. “I’m 76 years old and I have to spend the rest of my life going down there trying to defend my existence? Trying to convince people that I’m as worthy as anyone else is to continue my life?”
She says proponents of the bill often mistakenly point to pain and suffering as a primary argument to garner support for the bill.
“What they do is they use the pain and suffering thing as a marketing tool,” she adds. “Yet in reality, the people that choose to do this, that’s not the reason that they do it.
According to the data from Oregon, concerns about pain were only brought up by a little over a quarter of patients who requested medication. The most common concerns were loss of autonomy, being less able to engage in enjoyable activities and a loss of dignity.
Baumbach pushes back on this sentiment, saying comparing a lifelong disability and a terminal illness is like comparing apples and kumquats.
“You have to remember what population we’re talking about,” says Baumbach. “We’re talking about people who have a prognosis of six months or less to live. So let’s start with that subgroup. This is not somebody who has loss of hearing for the rest of their life — that is a very different situation. When they’re surveyed and they say “loss of autonomy,” They’re talking about in their last weeks of life; they’re not talking about their day-to-day for the next 40 years.”
Baumbach says the wording used to describe someone with a lifelong disability and a terminal illness are similar, but the outcomes aren’t the same.
"They’re talking about in their last weeks of life; they’re not talking about their day-to-day for the next 40 years.”
Opponents such as McMullen-Powell also worry about what they see as a lack of safeguards in legislation like this, saying there isn’t enough to protect patients from coercion.
“Their only thing their safeguards cover is immunity from prosecution for the perpetrators — that’s what the safeguards do in this legislation,” she says.
While the bill does provide immunity if the physician is acting in good faith to carry out the patients requests, there are numerous other pieces of the puzzle that doctors and patients need to complete to follow through with a request.
First, the bill states a person’s disability or age shouldn’t be a determining factor in eligibility. The physician also needs to obtain approval from another healthcare provider prior to dispensing any medication.
In an attempt to prevent coercion from family members who may benefit from the patient's death, the attending physician is required to meet with the patient in private to confirm they’re requesting this on their own accord — and the bill requires a witness who isn’t related, doesn’t benefit from a will and isn’t an employee at the patient’s health care facility, to be present for the signing of a written request.
Physicians must also determine if the patient has decision-making capacity, and decide if they should first refer them to a psychiatrist before proceeding. For example, patients with depression are typically not eligible to request this medication, despite having a terminal illness.
But as McMullen-Powell points out, less than four percent of patients who requested medication have been referred to a psychiatrist under Oregon’s law.
Something else has changed this year, the oldest and largest medical society in the First State has changed course and taken a neutral stance on Medically Assisted Suicide.
The Medical Society of Delaware had long been opposed to the practice, but leaders announced this year they’d remain neutral on the subject, and provide an objective source of information on the practice to Delaware health care providers.
MSD president Dr. Matthew Burday says efforts to change their position have been ongoing for years, but updated guidance from the American Medical Association and examining how the society can support all physicians helped make the change.
“And I think people just realized that, hey, it’s probably time to include members that have that interest,” he says. “Because otherwise, the Medical Society was really not inclusive — we weren’t including physicians that had that interest in helping them.”
The society now uses the term “engaged neutrality” when talking about the subject. Burday says their goal is to provide objective information on medical aid in dying, and what this means for patients and their doctors.
He adds the society also wants to use this opportunity to ensure patients and doctors know about all the options available to them when facing a terminal diagnosis.
“I think that a lot of patients don’t really realize what’s out there in terms of palliation and hospice,” Burday says. “And we, in our resolution, made that a big focus for patients and actually physicians too.”
And Burday says if someone doesn’t want to end their own life, they don’t have to — and hospitals and doctors can also choose not to participate in the practice.
The society published a survey back in 2019, showing 60 percent of members would rather keep the status quo than adopt a neutral position. But Burday says that survey had a very low turnout rate, and adopting a neutral position includes all members, both in support and opposed.
Opponents argue that legalizing this practice attacks respect for human life — and diminishes the rights of those with lifelong disabilities.
Baumbach says he’ll continue to work on convincing fellow lawmakers that public opinion is on his side, and remains hopeful he can one day get this bill passed.
Roman Battaglia is a corps member withReport for America, a national service program that places journalists into local newsrooms.
