When My Time Comes

MAN: Ready when you are.

REHM: Hi, it's Diane.

Happy to be with you.

On my mind this week, medical aid in dying.

As my radio and podcast listeners know, I've long lamented the fact that so many Americans seem to resist planning for the end of life.

I think this began to change in 2020, when the COVID-19 pandemic made us realize too many of us could die in a way we would never have chosen as my late husband did in 2014 of Parkinson's Disease.

His death led me to explore an alternative not available to him, an option known as medical aid in dying.

I learned so much from patients and their loved ones, from doctors and other experts.

And I want to share my journey with you, so, please, join me for "When My Time Comes", coming up next.

REHM: What is death?

How will my own life end?

What options do I have, if any, as to what my death will be like?

Artists, philosophers, writers, people like you and me have been considering questions like these for, well, for as long as there have been human beings.

Today, some of us are willing to speak openly about such things, but many of us are not.

LAMAR: We live in a, in a culture that seems to hide from mortality.

SHAVELSON: This is the most difficult experience for a patient, and their families.

SONQUIST-FOREST: Speaking about death and dying is complicated for people.

And it takes a certain amount of willingness to be vulnerable.

LEE: These conversations are not actually about dying.

They're about the quality of our lives.

KATALIN: Everybody's ideal is to die quickly in their sleep and not have any existential suffering.

But that's not available to many of us.

KLIGLER: 25% of people who die with chronic illness, die with uncontrolled pain.

WALLACE-PUSHINAITIS: I'm going to die of breast cancer, right.

One of the scariest things about that is, is that you have no control.

REHM: But you can control the end of life.

WALLACE-PUSHINAITIS: How I die.

I can control how I die.

LEE: Medical aid in dying is a medical treatment that enables a person who is dying, who has exhausted all hope for cure and is close to an imminent death; help them die in comfort, in peace and with reduced level of suffering.

SHAVELSON: When somebody is thinking about aid in dying, they're not thinking about it casually.

LUEDTKE: I think this is a very difficult debate for a lot of people.

ROTH: Some people don't feel it's an appropriate thing for a doctor to do.

CHEH: I don't know whether I would use it, but I know I'd like to have the choice.

GROSSO: This is between an individual and her family and doctor.

REHM: A good conversation goes...

BOTH: A long way.

GROSSO: Right, but it's a hard one.

REHM: Most people would rather not talk about death.

They'd rather push it out of their minds.

But I believe we must talk about it.

For me, thinking about what I would like to have at the end of my life is very important.

And sharing my wishes with my family, my friends, my physician, I believe will bring comfort to us all when my time comes.

REHM: I want to tell you about John Rehm, my husband of 54 years.

He was a fine man, self-confident, with a wonderful mind.

He was knowledgeable about so many things and John was a born teacher.

BUSBY: She hadn't been to college and she really went to the John Rehm graduate school and learned an awful lot.

He was brilliant.

John Rehm was thrilled with every step of Diane's career.

He was just so supportive of everything she did.

REHM: John Rehm retired at age 71, and he would wait for me to come home so we could go for a long walk around the neighborhood.

It was in 2004, on those walks that I began to hear John Rehm shuffle.

BUSBY: As the years went on, he became thinner and thinner and then his hands began to tremor.

REHM: So he knew something was wrong.

John was suffering from Parkinson's.

Parkinson's Disease is a progressive disorder of the nervous system.

And some people, like my husband, can develop complications that result in death.

John and I began to talk about his declining health and the possibility that he would die much sooner than I would.

MAN: Ready when you are.

REHM: On my radio program, just as in my life, I never shied away from tough subjects and neither did John Rehm.

On my mind this week, medical aid in dying.

Some call it "death with dignity" or "physician assisted dying."

It has different names.

I had been aware of this movement in the U.S. and was favorably inclined toward it, generally speaking.

My darling John died in 2014 and that experience made this issue very personal.

I realized I still had a lot to learn.

I decided I should do what I do best, investigate this subject and learn the facts.

SHAVELSON: You can decide to stop chemotherapy, you can decide to have surgery on your aorta or not.

REHM: One of the first experts I spoke with was Dr. Lonny Shavelson, a physician who has been focused on end of life care for over three decades.

SHAVELSON: Probably one of the driving forces for me to become a doctor was, was dealing with the question of suffering, especially around the time of Jack Kevorkian in the early '90s, I think that people started really talking about this.

REPORTER: He was a retired pathologist from Michigan who specialized in challenging authority.

Dr. Jack Kevorkian ignited a national debate in the 1990s over physician assisted suicide, when he helped more than 130 patients kill themselves.

KEVORKIAN: Many doctors agree with me, but they're intimidated into silence.

I am lucky to be in a position where I don't have to be silent.

LEE: People weren't aware there was a problem until the extremity of his activities brought it to light, how desperate people were to prevent, avoid end of life suffering.

SHAVELSON: It made me really realize that there was a bigger picture, that it was important for me to look into it, to understand it better and to really get into the idea of, in what was still then a hidden world of people asking to die because of illness and suffering.

REHM: When John was dying, he could no longer walk on his own, he could no longer stand on his own, he could no longer feed himself.

The doctor at the nursing home had said he was within six months of dying, because he had lost so much of his human capacity except the capacity to think.

He could think very clearly.

And John turned to the doctor and said, I am ready to die and I want you to help me.

And the doctor said, here in the state of Maryland, I have not the legal authority, the moral authority or any other authority by which to help you die.

The only way you can do this is to stop eating, stop drinking water, stop taking medication.

And John, for the first time in a long time, became enraged.

By the early 1990s, some people, patients, physicians and even some lawmakers, were beginning to look at what could be done legislatively to address end of life suffering in the United States.

The state of Oregon was at the center of that movement.

LEE: There had been multiple attempts in the legislatures of the nation to introduce a bill.

None of those bills ever went anywhere.

But we rolled up our sleeves and crafted a bill that we believed would satisfy people's concerns about safety, eligibility criteria that were crystal clear.

These are for mentally capable, terminally ill adults who are well informed of all their end of life options.

Because it's a medical procedure, it conforms to the standards of medical care.

REHM: Now there are a great many people who point to Oregon's law as the standard by which all the others then followed.

LEE: Oregon came online in November of 1997.

REHM: Right.

LEE: There was not another law passed until November of 2008.

REHM: Oh, wow.

LEE: We were having trouble making process in other states, until Brittany Maynard came on the scene in the waning days of 2014.

DIAZ: Brittany was an adventurous spirit.

She was a force of nature, would be a good way to describe her personality.

Brittany and I, we got married in September of 2012.

And a few months after our wedding, she started having headaches.

They would wake her up in the middle of the night.

REHM: Dan told me that by the summer they knew something was seriously wrong.

MAYNARD: I was told I had a grade two astrocytoma and was told anywhere from three, maybe five, up to ten years to live.

I have to tell you, when you're 29 years old, being told you have that kind of timeline still feels like you're being told you're going to die tomorrow.

70 days post-op, I went in for another MRI, and was told I had had a grade change.

They were looking and saying it looks like grade four, which is the worst and most aggressive form of brain cancer.

It's called a glioblastoma.

So that was a major shock to my system and the system of my family because it went from having potentially years of time to being told I had like six months.

DIAZ: Brittany told me, we will continue to fight this tumor, but if it gets bad, we're moving to Oregon.

Oregon's Death with Dignity Program was something that she had come across.

LEE: She decided that she would do what she could with the time she had remaining to pave the way so that other Californians wouldn't have to do what she did, and she was enormously effective.

MAYNARD: The freedom of this patient right is choice.

LEE: 100 million people worldwide had seen her, knew her name and knew what she stood for.

BROWN: And we have our own conversation now with Barbara Coombs Lee, president of Compassion and Choices, the group dedicated to expanding end of life options that's now working with Brittany Maynard.

And Dr. Ira Byock is director of the Institute for Human Caring of Providence Health and Services, a palliative care physician and author of the book, "The Best Care Possible".

Well, Barbara Coombs Lee, let me start with you.

Why do you think the case of Brittany Maynard is resonating with so many people?

What's the key to this for you?

LEE: The key is how Brittany has made dying real, made the tragedy of, of decline, the inhumanities that people suffer often before their disease takes their lives.

Brittany is bringing that reality home to people.

BYOCK: My heart goes out to Brittany Maynard.

It's a heart wrenching story.

But I want to assure the, our people watching that she could get excellent whole person care and be assured of dying gently in her bed, surrounded by her family.

Giving doctors now authority to write lethal prescriptions fixes really nothing, none of the deficiencies in practice or medical training, it's really a socially dangerous thing to do.

BROWN: Barbara Coombs Lee, a socially dangerous thing to do?

In other words, it might work in one individual case, for Brittany Maynard, but expanded, it doesn't make sense is the argument.

LEE: It makes sense for a lot of people and I think that I agree with Dr. Byock and he knows that I do.

Hospice and palliative care is the gold standard.

It's wonderful.

But it's not a miracle.

And it cannot prevent the kind of relentless, dehumanizing, horrific decline that Brittany faces.

KLIGLER: Brittany Maynard was able to do that and she's in many ways, a role model.

She's a... REHM: Moving from California to Oregon?

KLIGLER: To Oregon.

It means that you have to have the wherewithal to uproot yourself and your family, your caregivers.

So that takes it out of the option for many people.

REHM: There are people who feel so strongly, as John did, that control is what they want as to when it ends, how it ends.

But sadly, John was too ill to travel to Oregon, as Brittany Maynard had done.

I came in with a photograph album.

I sat on his bed and we looked at the photographs together.

And he said, Diane, I have not had any food, I have not had any medication, I have not had any water.

I have begun the journey.

He had a smile on his face.

And I believe it was because he had taken his life back into his own hands.

GRUBE: Everyone dies at some point in time.

But what is the enemy is terminal suffering.

None of us want people who are about to die to suffer and we go about different ways in trying to take care of that.

Language we use at end of life is so important that we... REHM: Dr. Grube speaks to medical students around the country about medical ethics and end of life care.

GRUBE: Those weeks or days or months sometimes when a, a person who is going to die anyway has intolerable suffering, I am trying to persuade them to open their minds to the fact that this is something I think that's compassionate.

Most people do not choose aid in dying because of lack of pain control.

Everybody thinks well, gosh, it's they're having, oh the suffering is pain.

Their suffering may be anhedonia, lack of joy or lack of pleasure, loss of autonomy, loss of dignity.

TOFFLER: We see the world differently.

You know, I believe that the solution to suffering is to help the sufferer, to be with the sufferer, to be willing to suffer with the patient.

That's what I dedicated my life to over these last 40 years as a doctor.

We have to do a better job of allowing people to die with dignity, naturally at the end of their life.

ROTH: This is something that's been much discussed at our national meetings for geriatrics and for hospice and palliative medicine.

So, it wasn't a new issue for any of us.

There's a lot of genuine disagreement, there's respect on both sides, but some people don't feel it's an appropriate thing for a doctor to do.

REHM: I wonder about the Hippocratic Oath, to do no harm.

How does that work into your thinking?

KLIGLER: Do no harm.

What is harm and who gets to define harm?

GRUBE: The harm is defined by the patient and not by the doctor.

REHM: And the suffering is defined by the patient.

GRUBE: Yeah.

KLIGLER: Bodie and I, he loves to come with me.

He loves to... REHM: Roger was diagnosed with incurable stage 4 prostate cancer.

He has since retired from practicing medicine, but he and his dog Bodie walk seven miles every day, no matter the weather.

KLIGLER: I always would tell my patients that just because you've got a terminal condition doesn't mean that you're dead yet.

That you should go on, you should continue living your life, you should seek the beauty that's in it and the enjoyment that you can.

REHM: John Rehm could have had such a peaceful death with his family around him, with all of us saying goodbye.

ZIDE: Basically for two weeks, I listened every day, sometimes twice a day, to my mom get updates from my grandmother about how his condition was like slowly declining.

BUSBY: It was just an excruciating time for all of them.

And especially for Diane, to have to sit and just watch this over such a long period.

REHM: On the ninth day, I stayed overnight, sleeping on two chairs, or trying to sleep on two chairs, watching this man suffer.

And the next day, my dear John was gone.

I spoke with Lori Wallace-Pushinaitis and her doctor.

Lori followed the passage of the California law closely.

WALLACE-PUSHINAITIS: I have had cancer for a little over seven years.

I have known it's metastatic for a little over four years, and if it's metastatic, there is no cure.

I'm going to die of breast cancer, right.

So the minute I found out that there was legislation that was being considered that we would vote on, I started telling my oncologist immediately, okay, in today's notes, I want you to put that I want this option.

And she's like, oh, but we don't, it's not even passed yet.

I'm like I don't care.

I want there to be as long a history in my medical records as possible.

SONQUIST-FOREST: We met specifically around the issue of, of her interest in the option.

WALLACE-PUSHINAITIS: Right.

SONQUIST-FOREST: Not with a plan, but just the reassurance that if it were there, that that would be comforting to her.

WALLACE-PUSHINAITIS: And I can't, I can't choose when, because if I would choose when, it would be when I'm 90, but that's not an option, right.

REHM: Lori, if you had the medication, do you think you'd use it?

WALLACE-PUSHINAITIS: I don't know.

I mean I can't, I don't know how it's going to look when I'm dying.

So, you know, I would love to fall asleep and then die in my sleep.

That'd be great.

I'd love to do that.

But, if it gets to the point where I have no quality of life and I cannot have my pain maintained, I'm going to want to do something about that, not only for me, but also for my children.

I have a 12-year old.

He does not need to see his mother in misery.

REHM: I understand.

WALLACE-PUSHINAITIS: And I will do whatever I can to make sure that it is my choice and not someone making a choice for me.

ROTH: There's a strong belief that good palliative medicine can almost always relieve suffering adequately.

SHAVELSON: Yet there are limits.

And I think that everybody has to acknowledge that anything in medicine has a time when it doesn't work.

SONQUIST-FOREST: In my experience, there's a subgroup of people for which nothing that we have treats, at the end of life, treats their suffering, nothing.

KLIGLER: 25% of people who die with chronic illness, die with uncontrolled pain.

ROTH: And in the palliative world, we have a lot of experience with physicians being very reluctant to adequately treat pain because they worry about hastening death.

But this is a tension that many physicians work with all the time, that they're actually afraid to adequately treat cancer pain or other kinds of pain, so doctors have struggled with this a lot.

REHM: The more I learned about medical aid in dying, the more I came to appreciate how complex an issue it is.

But for some patients, there can be barriers to care based on race or ethnicity, poverty, and other factors.

ZITTER: So, Mrs. C, we're going to up and see her right after.

REHM: To understand this better, I visited Highland Hospital where I met Dr. Jessica Zitter, an expert in palliative care.

ZITTER: What's something interesting to me and very alarming as somebody who takes care of patients, a lot of African American patients, a lot of patients of color, people, you know, who don't speak English, is that there are many, many, many options that are not available.

They don't tend to see or hear about hospice and palliative care as much as white patients do, or to access or to use it.

It's a real problem.

REHM: Isn't that interesting?

ZITTER: Yeah.

SHAVELSON: Access to medical care is unevenly distributed in all aspects throughout our state.

REHM: Throughout the country, indeed.

SHAVELSON: Rich, throughout the county, rich people, poor people, insured people, non-insured people, black people, white people, Latino people, Asian people, there is no even distribution of access and there is the unequal access to aid in dying just like we see unequal access to everything else.

PATIENT: It's more like ache than pain right now.

REHM: Good.

PATIENT: The pain is like, you know.

REHM: Softened a little bit.

So when do you reach that point when you say to the patient, maybe there's nothing more we should do?

When do you do that, and how do you communicate that to them?

ZITTER: Well, first, first of all, I would say those words are not the words that I would use, which is there's nothing more.

There's always something more we can do, there's always something more we can do, right.

REHM: But... ZITTER: Maybe we can't cure the disease.

Maybe our treatments can't stop this disease from progressing.

But there's lots of other successes we can have.

BHARGAVA: That's right.

ZITTER: I'm so sorry.

PATIENT: Yeah, that's sore.

ZITTER: I'm sorry.

Okay.

You know what I'm going to do?

I'm going to go call the team.

We're going to go find out what's going on.

Okay.

BHARGAVA: There are definitely families I've encountered that feel like saying that we're not going to intubate your loved one, saying that I don't think it's a good idea, they perceive as... ZITTER: An abandonment?

BHARGAVA: As sort of harmful or an abandonment, right.

REHM: Hello.

ZITTER: How are you today?

REHM: How are you feeling?

ZITTER: One of the things in, you know, that's a factor in my practice is I'm so afraid to think that someone would think that I was depriving them of something, on a racial basis or because they were less educated.

That's a terrifying thought for me.

So you can imagine the impulse to that would be to say well, let's just do everything, let's just keep going, we'll trach, we'll peg, we'll do everything.

And I think that what I've learned from the palliative care movement is to stop and to, to, to try and tolerate the feeling of discomfort in myself, the feeling of discomfort in the loved one or the patient and stay in the conversation.

MAN: Oh, gracious Lord, we pause for just a moment from a place of thanksgiving and gratitude, just knowing that you are right here in the presence with each of... REHM: I love Washington, DC.

It's been my home all of my life, and I've never wanted to live anywhere else.

Over the decades, I've seen tremendous changes happen here.

Finally, after a long battle, the District of Columbia has approved the right to medical aid in dying.

Tell me a little about how difficult it was to get this law passed.

CHEH: Well, it was not easy.

People need time to adapt to changing social circumstances, especially big issues like this.

LAMAR: Diane, the reason I opposed the law was the deep history of malfeasance when it comes to the United States of America and the medical establishment's commitment to caring equally for bodies that are not white.

I understand the law, I support what the law makes available, but I do not trust the government and establishment to be fair.

MAN: Put your hands together, everybody, welcome!

Would you reach your neighbors this morning in a spirit of love, peace and joy?

CHEH: There was a good deal of concern, skepticism, perhaps even suspicion on the part of African Americans about some of these medical things because in the past, we've had, we have a terrible history of taking advantage of African Americans.

REHM: Of course.

GROSSO: I got more opposition from, from religion than I did from African American communities.

The Catholics were the ones that are the most opposed, in my opinion and were during this debate.

And I was raised Catholic, so I kind of knew their arguments before they came in.

But it was important to listen.

CHEH: This is a choice.

No one has to participate.

No doctor, no pharmacy, no provider, no person.

No one.

If somebody is a person of faith and they feel that their faith prevents them from doing this, they're completely entitled to not act on it.

Or if there's a hospital that's religiously affiliated and they feel that their hospital should participate in this whatsoever, that's their choice.

REHM: While many religions disagree with these laws, the Catholic Church is the most outspoken and best funded opponent.

Please tell us what the Roman Catholic's Church's position is on medical aid in dying.

TUOHEY: We have a creator who creates life, but part of that created order is there is a natural way that we die, and return to our creator.

We shouldn't take control over that, but to let it unfold as nature would have it.

REHM: I know you are a devout Roman Catholic.

TOFFLER: Striving to be.

REHM: How much does your religious belief motivate your thinking?

TOFFLER: It's in sync with my thinking.

I say all human life is inherently valuable.

There's a million doctors in the country, Diane.

And they all don't have the same sense of reverence for life in all the stages, the beauty.

TUOHEY: So in the Catholic tradition, we would say that as your quality of life diminishes, your obligation to pursue and maintain life diminishes as well.

When we're just maintaining life, that is not living the fullness of life, so we're allowed to say no to medical interventions that would prolong that life.

REHM: But what about medical aid in dying?

TUOHEY: Right.

Since death is a part of life, we would say it's one thing to say, you know, my quality of life is diminishing, I don't want to pursue this, that.

It's another thing to step in and to take over the process.

LAMAR: If I had a magic wand that would ensure that no person at all, no matter who they are, would be discriminated against, and that they would be treated fairly and honorably and if this was that person's decision, then I would support it.

REHM: Maryland is just one of the many states that have considered medical aid in dying over the past several years.

LUEDTKE: The opponents of the bill that contacted me over the course of the last couple of years have, have largely focused on religious arguments, moral arguments.

It's always been an issue that I've struggled with, and, you know, it's been in the legislature for a number of years now, and I was originally opposed.

And I was worried that it would normalize suicide.

I was worried that it was, it was a first step on a, a slippery slope.

REHM: Do you consider medical aid in dying suicide?

CHEH: No.

The person is on the threshold of dying.

We're just choosing how, in that little window that they have left, how they choose to die.

SHAVELSON: People who are going to suicide have the choice to live and choose to end their life.

People who are doing aid in dying don't have the choice to live.

REHM: Tell me, if you can, what happened to change your thinking.

LUEDTKE: It changed with the death of my mother.

She contracted esophageal cancer in 2014.

You know, the doctors did their best to try to make her comfortable.

She was obviously in pretty extreme pain, even with all the palliative care she was getting.

A few days before she died, she went into the kitchen and got the bottle of liquid morphine that she'd been prescribed for the pain and tried to drink it, tried to commit suicide.

Thinking about my mother and what she went through and I began to question whether I had the right as an elected official or even as her next of kin to make that decision for her.

REHM: Delegate Luedtke's story reminded me of something another legislator told me, that each of us is just one bad death away from supporting these laws.

Bill Roberts and I have been friends since high school when we were voted "cutest couple" in the graduating class.

But in 2018, he was diagnosed with stage 4 prostate cancer and congestive heart failure.

As happened with John Rehm and myself, Irene and Bill had to face their own mortality.

ROBERTS: And we have discussed end of life because friends have died.

You know, and sometimes terrible things have happened to people we've loved so much and it was, it was happening to us.

You know, when you get to be in your 80s, you know no one gets out alive.

BILL: I guess there's a bet going with the doctors at the hospital as to what'll get me first, the, the heart failure or the cancer.

REHM: You live in Colorado where medical aid in dying is permitted.

BILL: I feel very lucky in, in living in Colorado and having this option.

It will be a gentle easing into whatever comes next.

I, I, I have no great anticipation for the next life, but I'll tell you what, I'll, I'll find out and I'll try to let you know.

REHM: That conversation was bittersweet for me.

I knew that my old friend would die soon, but I took comfort in knowing that he, unlike my husband, would have the option of medical aid in dying.

I want to say thank you to everyone who is here.

I want to say to the proponents, the people who are here in favor of the bill, thank you so much for all your efforts and I'm so grateful to have you here.

And I want to say to the opponents, thank you for taking your time to be here... And so, when the Maryland legislature took up the matter again.

CLIPPINGER: We're going to call House Bill 3.

REHM: And I was asked to testify, both Bill Roberts and John Rehm were very much on my mind.

CALLINAN: The Maryland legislation that is before you today has been modeled after the Oregon Death with Dignity Act.

And it's been implemented in eight other jurisdictions for a combined 40 years of experience.

And I hope that this time around that we can bring this compassionate and much needed option to the residents of Maryland.

REHM: Good afternoon, I'm Diane Rehm.

The legislation you are considering might have permitted John Rehm to have the measure of autonomy that he wanted over his own death.

By this time, what I had heard from patients, family members, physicians and others had taught me a lot.

This end of life option provokes strong feelings in people, as it should, and as the concerns of the Maryland lawmakers demonstrated.

CLIPPINGER: Delegate Watson.

WATSON: Thank you, Mr.

Chair, and thank you all for coming out.

I really appreciate it.

This has answered a lot of questions, but I still have one or two remaining.

LUEDTKE: We had had a very emotionally wrought debate on the bill when it came to the House floor.

It was a very difficult conversation to have.

WATSON: My concern is based around the financial capability and dwindling resources as we age, of certain demographics.

LEGISLATOR: The concern from my constituents is like a lot of them, they have a concern about fear, economic situation, vulnerable community.

WATSON: I mean what if, at the end of the day, a health insurance company looks at it strictly as any business to maximize revenue, and they say instead of paying for someone to take chemo over an extended period of time when they're going to pass away anyway, let's save money and give them this one option.

McCOMAS: The, the folks that maybe don't have the best insurance to get the best treatment, are going to be kind of if they're in pain, this may be their only option?

LEGISLATOR: And what the fact is in the health care insurance industry, a dead person is the most cost effective person of all.

CONAWAY: What's the difference between this medical aid in dying medication and the morphine?

LOPEZ: What happens if the medication isn't administered properly or if it doesn't work as intended?

LEWIS: Can you explain, very briefly, what a physician looks to to determine mental capacity?

LEGISLATOR: How do you respond to folks who feel very strongly that aid in dying would increase the risk of death for truly vulnerable people?

That is those who are disabled in some way.

DOCTOR: Amyotrophic lateral sclerosis, for example, ALS... CHEH: These laws that we've passed, the law here and in other jurisdictions, requires that somebody meet certain criteria.

That means that people who are not able to self-administer cannot avail themselves of this law.

And there was an interesting divide in the disabled community.

There were those who were worried that this would be a step toward euthanasia and people who were disabled would, you know, be at risk, you know, in the future.

But there are others in the disabled community who were disappointed in the legislation because they said what if we have a disability that prevents us from self-administering.

And I said, you know, it's not a flaw in the legislation so much it is an understanding of what we could accomplish at this time.

CALLINAN: So you have to keep in mind you've got this legislation and its protections, but you also have an entire practice of medicine where doctors are licensed and education and certification.

Those practices and rules also govern this practice.

LEGISLATOR: I think that we make a lot of rash and bad decisions sometimes when we're in pain, because all... REHM: The legislators expressed very understandable concerns.

But in states where laws have been implemented, evidence shows the protections written into them have worked.

Knowing that lets me focus on what is so important to me, individual autonomy.

My philosophy in this matter is to respect that singularly personal moment for each of us.

If you believe that only God should be the decider, I support you 100%.

If you wish to have every single option that medical science can provide, I support you 100%.

And if you believe, as I do, that you want the right to end your suffering at a time you choose, I support you 100%.

LUEDTKE: The bill went over to the Senate and I think I lot of the senators were struggling with the issue in the same way that a lot of them members of the House were.

It did end up tying, one vote short of what it needed to pass.

I was disappointed when the bill failed.

REHM: So was I.

But I expect the bill will come up again, and I hope it will pass next time.

Washington, D.C.'s Death with Dignity Law went into effect in June of 2017, but no terminally ill patient actually used the law for over a year.

One of the first patients to do so was journalist and artist Mary Klein.

Stella Dawson was Mary's wife and life partner for more than 37 years.

DAWSON: Mary was complaining of stomach pains and of digestive problems, she said Stella, I'm really, really tired.

I came back from work and Mary took my hand and took me into the living room and we sat down, and she said, "Stella, I think I have cancer."

And so we spent the weekend researching doctors and got an appointment and sure enough, it was advanced ovarian cancer.

She did five series of chemo because she was, she wanted to live and she wanted that opportunity to enjoy her life.

So she did all that she could for as long as she could.

Nothing was working.

REHM: Mary's diagnosis came before medical aid in dying was legal in Washington, D.C.

But as her disease progressed, she learned the City Council would be voting on a bill.

DAWSON: Mary said to me, "Stella, there's a chance that we can get medical aid in dying here in the District."

so we both hit the telephones, started writing letters.

And Mary Cheh was the first person who responded.

CHEH: She was very, very brave.

She was quite ill too.

REHM: I know.

CHEH: And she would come and she would testify.

GROSSO: She was not even sure that the law would be in place before she passed away.

And so I remember her saying, "This is what I'm trying to do with my end of life is give somebody in the future the freedom to make this decision and not have to go through what I've gone through."

KLEIN: And let me just say, these are difficult conversations to have with your doctor.

REHM: Mary spoke out at a public meeting saying, "I can't find a doctor who is willing to participate with me."

So how difficult was it to find that doctor?

DAWSON: It was very stressful.

REHM: Mary Klein was referred to you?

ROTH: She told me as soon as we met that she was looking for a physician to help her.

DAWSON: And she said, "I've never done this.

If you're willing to on this journey with me, I'm willing to go on it with you."

REHM: Wow.

DAWSON: Mary saw this as part of a continuum of care and she was enrolled in hospice and was very pleased with the hospice care she got.

REHM: Good.

DAWSON: But she was waiting as long as she could with the medications that we had that she could manage and they weren't working anymore.

They weren't working.

ROTH: At the very end, I said you know I could give you enough medicine so that you just would sleep for the rest of the time you have, and she said I don't want that.

DAWSON: She did not want to be in a coma or a semi coma at the end of her life.

She wanted to be present, she wanted to be with me and the dogs.

She wanted to be able to say goodbye.

REHM: Of course.

DAWSON: And it was that night she said to me, Stella it's time.

You don't know it's going to be the end, do you?

REHM: No.

DAWSON: You don't.

REHM: You don't, you don't.

DAWSON: You know, even though, even though she said something like that, I still thought she had several weeks.

ROTH: I visited her four days before she died and then again on the day that she died.

REHM: Oh, I'm so glad.

ROTH: And Mary was dying, that last time I saw her.

I, she died from ovarian cancer.

She did not die from the potion that she drank, that just affected the time she died.

But she was already dying.

DAWSON: She just laid back and went into a very deep sleep.

REHM: And you were right there with her.

DAWSON: It was about two and a half hours before she passed away.

And she died in my arms.

That's what she wanted.

That's exactly, it's what she fought so very, very hard for.

It's a peaceful death.

And it's a loving death.

I think that's all I can say.

(siren) REHM: In 2020, humanity began a long struggle with the COVID-19 pandemic, tens of millions became infected and many, many deaths were reported each day.

In this country, I think this has led more of us to recognize the importance of making our end of life wishes known to those close to us.

Then would you be good enough to take the phone out of your pocket and video this?

ZIDE: Okay.

REHM: Because I would very much like your mother, your father, uncle Dave, Aunt Nancy, everybody to know exactly how I feel about what I'd like at the end of life.

ZIDE: Do you want me to record it?

REHM: Please.

To my family, my physician and any hospital...

I believe that the more we learn to talk openly about death, the better.

It's been such a taboo subject for many of us for too long, but if we can discuss what we want with our friends, our doctors, our families, if we can make our own wishes known to those who care about us, everyone will be more prepared, and the end of life will be less stressful and could be more joyous for us all.

As for me, in my early 80s, I'm living life to the fullest.

I'm still working, I've remarried, I travel, I have a new puppy.

Life is wonderful.

But, I have also prepared for what will eventually come for all of us, and I'll be ready when my time comes.

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