My mother didn’t get the death she wanted. Pennsylvania can change that for others.

My mother died a horrible death.

She was among the thousands of people in the United States with ALS. The disease is marked by a gradual atrophy of the muscles necessary for movements such as walking, talking, breathing, and swallowing. Over time, my mother lost the protective sheath those muscles provide, and her arms and legs became all brittle bones and paper-thin skin; textured blankets left their patterns on her body. Even the slightest pressure was agony, but she refused the heavy doses of pain pills she was given, out of fear they would take away the one thing she had left — lucidity.

As her only child, I moved in, became her full-time caregiver, and spent every minute of every day doing everything I could to alleviate her pain. But it wasn’t enough. By the end, she was never comfortable, and I would find her weeping in the middle of the night. “I can’t do this,” she would tell me.

Thankfully, end-of-life care has improved since my mother died in 2007. Palliative care — the field of medicine dedicated to relieving the stress and pain of serious illness — has become more mainstream. When my father died of dementia in September 2020, he had been receiving palliative care for years, including a steady dose of fentanyl, at his request. He gradually worsened over time; once his body started actively dying, his breathing slowed over 36 hours and then, finally, stopped. It was peaceful. I watched it happen, and walked away with immense gratitude that he got the death he wanted.

But my mother didn’t. Because she didn’t want to wait until her last breath.

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New Jersey and nine other states have enacted laws that allow doctors to prescribe lethal doses of medications to patients with terminal illnesses, known as medical aid in dying.

Why hasn’t this happened yet in Pennsylvania? There is a bill on the table, but it hasn’t passed. Why is it so controversial to give people the death they want?

I speak from experience: When someone you love is nearing the end of life, there is nothing more important to them, and to you, than a good death.

Even if Pennsylvania manages to pass a medical aid-in-dying law, it would be flawed, along with all the other aid-in-dying laws on the books in other states, because these laws require that patients give themselves lethal medication. By the time my mother was ready to die, she would have likely been too paralyzed to do this. There’s a whole class of patients who are terminally ill and cannot ingest the medication without assistance. Our laws, as written, leave them behind.

I understand why some people want to make self-administration a requirement for aid in dying: We need to be 100% sure dying patients who choose to end their lives really choose it, and it’s not forced upon them by exhausted caregivers, greedy beneficiaries, or insurance companies that don’t want to pay for end-of-life care.

But requiring that patients be able to give themselves lethal medication means that those with ALS may feel pressure to take it before they are ready, to make sure they can still submit a written request, move their arms, and swallow. And my mother wanted to enjoy her life for as long as she could, to spend time with the family and friends who were strong enough to sit by the side of a dying woman. I was grateful for every good day she had: We ate Big Macs for breakfast, we laughed until we cried at videos of strangers slipping down icy driveways, and she talked me through how to make her best recipes. By the time her good days were behind her, I was feeding her, bathing her, changing her, and turning her lifeless body in the middle of the night.

Once patients have lost the ability to take the lethal drugs without any assistance, there’s very little providers can do to help them legally end their lives. “I think what we’ve been forced to do is abandon a certain group of patients,” Lonny Shavelson, chair of the American Clinicians Academy on Medical Aid in Dying, told me.

Other countries do things differently. Drive a few hours north, and you will be in Canada, where doctors can perform euthanasia and help administer lethal drugs to dying patients. This option is so close to us, and yet so far away.

Pennsylvania (and every other state) needs to pass an aid-in-dying law, which should be expanded to include terminally ill patients who may have trouble giving themselves the lethal medication.

This won’t create a surge of suicides. In jurisdictions where aid in dying is legal, it accounts for less than 5% of deaths from all causes. In 2020, only 33 people used medical aid in dying in New Jersey; in 2021, the number rose to just 50. Research has also shown that aid-in-dying laws and euthanasia do not create a “slippery slope” that puts the disabled and other vulnerable groups at risk of being pressured to die against their will.

Giving patients the death they want — whatever that looks like — doesn’t just help them; it also gives peace to the people left behind. Research backs this up: A study of hundreds of people with terminal cancer found that when they opted for euthanasia, their loved ones experienced less grief, traumatic grief, and post-traumatic stress than the loved ones of people who experienced a natural death.

Giving patients the death they want — whatever that looks like — doesn’t just help them.

My father’s death broke my heart in many ways, but I am not haunted by it. My mother’s death, however, changed me forever. It changed how I saw the world, stripping away any notion I had of fairness or justice. How could someone who did so much good in her life, and filled mine with so much love, be forced to die in such a horrible way? The memories of her final months will never leave me; inside, I will always be the daughter sitting at her mother’s bedside, watching her beg for it all to be over.

After years of grief counseling, I have learned to live with my memories, and sometimes the good ones overpower the bad. I willed myself to place some trust in the universe and had a baby, despite my fears that she would be born with a painful condition or terminal disease, locking me once again into the role of helpless caregiver. My daughter is now 8 years old, and she gives me something to be grateful for again. We get doughnuts on Fridays, we laugh until we cry at videos of strangers slipping down icy driveways, and we eat the delicious food my mother taught me to make.

Alison McCook is an assistant opinion editor at The Inquirer. amccook@inquirer.com @alisonmccook