(music playing) - Welcome to the Aaron Harber show.

I'm your host, Aaron Harber.

Joining me today and advocate for medical aid in dying.

Dan Diaz.

Dan, thanks so much for joining me.

- Thank you so much Aaron for this opportunity.

I appreciate it.

- Well, I appreciate your spending the time to join me.

Of course you know the motivation for what you've been doing for years and your mission and sacrifice was based on what happened to your wife.

Brittany.

Tell me just kind of encapsulate that story.

We're going to have some links so people can learn a lot more about her.

- Brittany and I, we were married in 2012.

A few months after we got married, Brittany started having these headaches that would wake her up in the middle of the night.

She'd start throwing up, be unable to go back to sleep.

A physician said that it may be migraines and this is now the middle of 2013.

Oddly, it seemed to help a little bit, but by the end of that year, those headaches were back and we were actually, it was New Year's Eve.

We were in Healdsburg or Sonoma wine country, and coming back from lunch Brittany, when we got back to the hotel, she's throwing up, we end up in the emergency room.

And that's when we discovered a very large brain tumor.

Brittany had surgery just 10 days later.

And after that surgery, the physician said that she likely had three years, maybe five years, to live.

And, you know, at age at 29 years old, that news just turned our world upside down.

Unfortunately, just two months after that surgery, the next MRI showed that the tumor had changed grades was indicative of a GBM glioblastoma multiform so the most aggressive type of brain cancer.

And at that point, they told Brittany that six months was all the time that she had left.

So with that news Brittany said, well, we will continue to fight because that's what you do when you have cancer.

But she said we will do that from Oregon.

And so the reason her case got so much attention is because here is this 29 year old with a brain tumor saying, well, we're moving to Oregon because at that time, Oregon did have their death with dignity law.

California did not, and that allowed her to simply take back that little bit of control from the disease.

There was no way that Brittany was going to allow the brain tumor to be in the driver's seat and dictate how much suffering she might have to endure at end of life.

So we moved up there.

She found a house for us to rent on Craigslist.

She had to find a new medical team.

We had to establish residency.

We packed up half of our home in California into a U-Haul truck.

And we drive 600 miles north to Portland Oregon.

And that was the whole reason Britney spoke up.

It was just the injustice that nobody could ever have to endure that.

Yeah, that idea that after being told you have six months, one of the things, first things you're gonna have to contemplate is my dying process might not be easy.

And based off of a simple search on the Internet of what a person with a brain tumor might have to endure.

So the idea that a person would have to leave their home.

Brittany spoke up to effect change, and so you know, when she died there were four states, and I've continued to work on helping pass legislation and more and we're up to 11 at this point.

- How did this experience change if it did or affect your view about life and death?

- In this country, we just kind of take for granted that, my dying process hopefully I just die in my sleep and it'll be like a hallmark movie with soft music playing and and then the reality that no, there are deaths that are very difficult and tragic.

Not easy, that there is suffering and so I probably would have never really thought about death.

But when this occurs to Brittany and essentially it punches you in the face all of a sudden you recognize this is something that we should talk about as a society, as a whole, that death and dying, it's just a part of life and living.

It's something that eventually will happen to all of us, and so we shouldn't be afraid to have those conversations and navigate, you know, our end of life in a way that we that fits within our own sense of spirituality.

- When you're making your effort to help give this option to millions of more people, you know, I'm sure when you encounter the medical establishment, you know there's some resistance at different points.

Youknow the concept of do no harm for example, the idea that, you know, our medical establishment certainly is structured to literally prolong people's lives as much as possible so that this kind of flies in the face of it.

What's your experience been and how do you counter that?

Because that has a tremendous amount of momentum.

- Absolutely, so in California, for example, when we passed our legislation, the California Medical Association.

removed all opposition.

They took a position of neutrality, essentially saying that this medical decision, just like any other is between that patient working with their physician and you know, providing the best care possible.

And so that idea of do no harm is one-- that one and these are Brittany's words do no harm, well what's worse there are things that are worse than death.

Being tortured to death would be worse than just a gentle dying process.

And so the one thing from the medical and you know at this point Brittany is in three textbooks.

I've had publishers reach out to me that they want to share Brittany story as part of medical training and it's the recognition that modern medicine for all its wonderful advances, it's still not perfect.

It still cannot keep in 100% of the cases an individual from suffering, and so that do no harm is a concept absolutely that we all, you know, hope the medical establishment can achieve, but insisting that a person like Brittany that brain tumor and the image of it.

Which I'll send and so it can be shared, but the reality of the pain at the base first goal that not even morphine can alleviate the nausea, the vomiting, the seizures are getting worse.

It is literally torturing it will torture her to death.

So allowing her the ability to experience a gentle death wouldn't that be the do no harm.

- You talked about in her case where there clearly was a misdiagnosis initially.

- Early on, yeah.

Them saying it was migrant, but that's because the CT scan had not been ordered.

As soon as they saw that photo, then it was evident.

- The reality is and as you mentioned, I mean the medical staff and doctors do not always get it right.

So what about the case where somebody is given a diagnosis and told you only have six months to live or a year to live, whatever the case may be, - Right.

- And what if that diagnosis is wrong?

- In that regard I don't know, I use Brittany's as an example.

They said she had six months to live.

She actually lived seven.

My response to that one's really easy.

That's called success.

The goal is to live.

The goal is to live a year, 2 years, 3 years down the road.

This program, in order to qualify that 2 physicians have to agree that you're terminally ill with six months or less to live, that you're mentally competent.

You make the request verbally and in writing.

There's a waiting period, there's witnesses.

The strongest safeguard is that that patient has to be able to consume that medication on her own.

Nothing is ever done to the patient.

So all those safeguards we receive that medication, Brittany, put that in the cupboard and her focus was on living life.

And so that's my answer to whenever that because opponents will bring that up and say, well, we don't do a good job of prognosticating and they get things wrong and my response is and I hope they do from the standpoint that I'd like nothing more than, you know, all these years later to have Brittany being the one sitting here, explaining, just the sense of relief that having the medication provided to her, this six month prognosis again that's just to qualify for the medication.

But there's no deadline that you have to utilize it and within those six months and one of the most telling facts if I may of-- and this holds true in all the states that we've now passed this legislation, this program more than 1/3 of the individuals that qualify for and receive the medication they die of their underlying disease without needing to take the medication.

- I thought about one of the answers to my question as well.

If you get them, if you qualify for the medication and if you get the medication and you're told you only have six months or eight months to live and you're doing fine, it's six months or eight months, you're not going to take the medication.

- That is the thing, you continue living.

- Yeah, and if they were wrong you keep going.

- Right, like I said, that's success.

- You keep living strive.

That's that's.

- But on the misdiagnosis question, I was curious, do they-- it would be really interesting at least you know I would think in terms of gathering data to know how accurate the diagnosis was, and so I was curious.

Does any state or has anyone proposed that anyone who uses medical aid in dying have an autopsy so that they can tell on a case by case basis and gather the data say the doctors did have it right or no, they actually died of something else we didn't even know about.

Using Brittany's case, the the size of that tumor, the location of that and where the growth was coming.

There were mornings where she would wake up and she would tell me she would say Dan, I can feel that this tumor it's killing me.

I can feel it.

And it's one of those things where we are in our active living process.

I'll use that term versus there will come a point where we are actively dying.

And I think each and every one of us when we kind of get to that and so for Brittany, the decisions that she was making was based off of obviously, the symptoms that she was suffering through, but also every week or the frequency of the MRI scans that we were getting, the physician could point to and say well, the reason that you're feeling weakness in your left side or that ankle is probably because we're seeing growth in the tumor in this area in this area.

So we weren't-- there wasn't any autopsy afterwards.

With other diseases, you know, pancreatic cancer, breast cancer, colon cancer or even like in the case of ALS.

Well, that's one where they know, OK, that is what's ending this person's life.

- One of the interesting statistics is something like in the general population, 17% of people die of cancer.

But with medical aids and dying, is the people who have used it are of represent about 3/4 of of you know, 70-- - But number 1 disease state is cancer.

I think the second one is ALS and then other.

- Alright but cancer totally dominates.

Also, the numbers strike me as interesting.

Only about 6000 people so far, 6000, 7000 people have utilize this option.

- They --- - Oh yeah, across the entire country, over a period of time that about 66 million people have died.

- Right.

- So you, you're looking at something like 100th of 1% or, I mean, yeah, some really-- I may be off.

It might be one thousandth of 1% Certainly people have been concerned that this might be abused, so let's talk a little bit about that.

You know, someone might actually be healthy, but be terribly depressed.

How do you address a situation where someone is terribly deressed and may be ill, but not you know, to the extent Brittany was.

Who wants to use this option?

- That's where and there was a piece that was run after California.

I think it was the Los Angeles Times, but the reporting with that story focused on was the unexpected benefit of this legislation that once it past there were people because of the publicity around it or now that people are aware of it, that they were going to see their clinicians and saying, you know, I have this or I have that and I'd like to pursue medically and die.

I want to apply for the end of life option acting California or Colorado or whatever state and it afforded that positioned the opportunity to say wait, wait a second, you're not terminally ill, you're not within-- You do not qualify for medical aid and dying.

But what it allowed that physician to do is identify there are parts of that patients care that are not being addressed and some of it may be emotional, psychological.

And it allows that physician to, say, hold on, I'm going to have you speak with, you know, my colleagues specialist that can help treat that.

And once that occurs, well, now all of a sudden that patient forgets about the whole medical and dying thing their care that they need, they received in the absence of that.

The problem then is that, well, people do get depressed, despondent and they try to take matters into their own hands, hoarding pills or use of a firearm.

And that's not medical care.

So yeah, the response being that this, the passage of this legislation, I'd say for the first time protects those vulnerable because as soon as they start having this conversation, well now their medical team can actually do something to care for them.

- What about people with dementia or Alzheimer's who are actually in full control of their faculties, as it were?

- That's a tough one and that one I get asked when I speak at palliative care conference.

The mental competency protection that is in this expressly prohibits anybody with Alzheimer's and dementia for pursuing this because by the time a person with either one of those conditions reaches that six months terminal, ill prognosis, mental competency cannot be established.

And so I get asked that question and and my response is that look that is a major issue that we as a society we need to do a much better job of addressing.

But that is not included as part of this legislation, and if we made that attempt to open that window to broader than six months or somebody saying, well, I want to make that determination now and put it in writing and that's going to count for, you know, five years down the road, we'll never be able to pass another piece of legislation in any state.

- One of my interests is kind of the financial perspective on this.

I mean, when you look at what's happening to our healthcare system, it's gotten outrageously expensive, funding is an issue.

I mean, if you look at, you know where Medicare and Medicaid are headed in terms of huge discrepancies between, you know, demand for services and supply of finances, of revenue.

And then if you couple that with the extraordinary amount of money we spend on end of life care.

I mean the grossly disproportionate amount where you know something like 34% or some incredible number is-- - Spent right at the end of life.

- Right, in the last literally you know a year or two whatever of life, does that put the system under pressure to ultimately promote medical aid in dying if more people are using that option and not having the country incur that kind of cost and the vast majority of people who use medical ended diying, 9 out of 10 are on some type of public health care system there, not in fact in one study, none of the people involved who used made used medical aid and dying had private insurance.

I think most people think of, oh, these are people in their 80s and 90s who are using it, but in reality, a majority of the people who use this option are 74 years old or younger, and that statistic surprised me.

- As far as my working with the clinicians, doctors that actually write the prescriptions that have those conversations for the patients to qualify for this.

Kind of baked into that whole process.

They are not finding that concern that, oh this patient because of lack of funds that they're just making this knee jerk response of, well, this is the option that I'm going to take in order to save from a financial standpoint.

Because to counter that narrative, I always say, well, take medical aid and dying out of the equation.

Let's pretend we're in a state where that's not an option.

Is that person's care any better?

Is you know, what the funding that didn't change anything as far as the options that they have for themselves.

I would argue, well, it's made it worse because now depending on the disease they may have on top of not having you know the access to say the medical, same medical care surgeons that Brittany had on top of that, when it comes down to their final few days where again they had to apply for qualify for received this medication, they weren't depressed.

That's not a reason that doesn't qualify for them.

They had to be terminally ill six months or less to live, etcetera, all those safeguards in place without this legislation, that person also now has to suffer the indignity of potentially a horrific dying process.

So the numbers and the experiences of-- and when you look at any of the state annual reports and this is something that I've actually been working on.

The demographics of the people who use this still tend to be white, higher educated, higher socioeconomic class, etcetera.

The opponents will claim Oh well, this is going to be used to get rid of lower income individualS, or racial groups, etcetera.

It's like, well, in California, the data from last year's report, I think there were 690 people who used it.

The number of individuals that were African American was 40.

So where is this rampant abuse that's happened and the targeting of lower socioeconomic or people of color it's like it-- Kind of talking out of both sides of their mouth.

- I think there's a concern.

I mean, because you always hear, you know, of course you know why they're rare stories.

They're the most, you know, spectacular ones where, you know, you hear about family members who convince Granny to do something or I mean there are a lot of horrific elder abuse stories.

And so I think, you know, one of the concerns is, you know, there are people out there who would have no compunction and certainly a tiny minority of our population, but significant nonetheless who would have no compunction about pressuring a grandfather, a grandmother, to go this route.

- A grandfather sitting on $3,000,000 heritance and you have a grandchild or a nephew saying, well, let's hurry this thing along.

- For some people, it could be a $30,000 inheritance.

- Sure, correct.

- Or just getting the car.

Here's I guess the the rebuttal that would be well, there hasn't been a single documented case of that in the use of medical aid and dying.

Let's not kid ourselves on the night stand.

And I can again use Brittany as example.

We had drugs that were just as lethal.

In order for-- they're sitting in my bag right now, I could bring those out as the-- to show in order for Brittany to get it dilated is 4 times stronger than morphine.

In order for Brittany to get that medication, she just has to be in pain.

There weren't 2 physicians identifying that she's terminally ill, that she's mentally competent.

There was no criteria for her to get it's on the night stand.

So as far as that abuse behind closed doors that's happening behind closed doors and at times I push back I'm like, where's the outrage?

Because that is occurring versus in the legislation.

Written into the language states anybody who attempts to coerce, encourage, push a person down the path of applying for this is punishable as a felony.

So if I was to use to encourage Brittany and she says, well, my husband told me to talk to you, like, wait, wait, your husband?

Hold on.

So it gives the opportunity to provide those protections for those individuals.

- I'm going to do a little rapid fire certainly, you know their number-- I'd like to hear about your opponents.

I mean, they're people who believe it's morally wrong to end the life.

Give me your take on that.

What's your response?

- Every State House I've been to my biggest opponent is the Catholic Church, and I speak as a Catholic and my response to that, I went to Catholic school.

I was an altar boy the whole 9 years, support for medical and dying nationwide, depending on the year, 72%, 74% support amongst Catholics nationwide, 70%.

So church leadership, they're opposed and my response is totally fine.

You can be opposed.

The congregation, the people who sit in the pews, they agree with Brittany.

They recognize this is not-- This is not a religious issue.

This is a medical issue.

A person navigating their end of life.

- So certainly for some people it's a religious issue in the sense that a lot of people believe in divine intervention.

A lot of people believe with prayer or whatever that even though they may be told that their life is about to end, that you know they still have a shot and that this is not a good idea.

- And that's the strength of this legislation, is that for somebody like Brittany who feels that it's an option.

She can pursue it for someone who is opposed for whatever their ethical or religious standpoint, they simply would never avail themselves of it.

They don't apply for it.

They don't go down that path and they can navigate their own end of life in accordance with their own set of spiritual beliefs.

That, to me, is the strength of it being that that option.

- When you consider the people you talked a little bit about, the people have used it.

And what is interesting is the demographic profile is highly educated, higher income.

Is it something that that people at other socioeconomic levels are not actually being given the opportunity?

Is there a lack of education about this option?

Does that mean that as you go further down the financial or economic pyramid, more people are suffering because they don't know about this option?

- That also touches on just the disparity in healthcare.

That, unfortunately, depending on the ZIP code that an individual lives in, they have their access and opportunity.

But yes, that is a big part and I've often said once we pass this legislation, that's when the hard work begins, because compassion and choice is the organization that I continue working alongside our implementation team.

I mean that's a huge part of this getting medical institutions ramped up, ready to have these conversations, all the forms, all the documentation needs to occur and it and we need to do a better job of making sure that all communities at least are aware of it.

- I'm surprised that after all these years, literally so few states have adopted this legislation, and I'm sure it's been proposed in pretty much everyone, are considered in some form.

Why has the opposition been so effective in holding this back?

Because my predictions in that in, you know, in 10 years pretty much every state will have this.

- I'd say that we can probably get this into about half the States and unfortunately it does kind of get down into the politics of this.

- And what are the politics?

- Well, the opposition I mentioned from the Catholic Church, well, it's because they've had 2000 years to organize and so many times when I am speaking with an elected official and they'll just outright tell me that, well, I can't vote for this because they had a conversation with a priest or they have a Bishop that's in their ear and there's- And then they feel that they evangelical, they're just not going to vote for it.

It's frustrating when 70% of that the citizenry of that state is supportive and yet that legislator is listening only to their their priest or their pastor.

- What's the biggest set back that you've had in trying to get this passed in different states?

- In that example I just shared where we have overwhelming support in a given state and there will be a given senator or Assembly Member that they're the committee chair of whatever committee we need to get through, that one legislator if they're like man, I don't want to hear this bill this year, we'll do it next.

That's it.

They've completely squashed and it's like, wait democracy is one legislation.

We have the votes we need and the Senate and the House, and the Governor has already signaled that they will sign it.

And if one legislator is like man and that's it.

So that has been a frustration that I've experienced in different States and there's a couple right now where that's the case next year we'll start up again and you know every year we make incremental progress.

- I'm sad to tell you that that situation where one committee chair, one you know, someone in a leadership position, actually and that's key.

It's not that it's their vote against something, it's that they decide what gets scheduled.

And I think what the public doesn't realize is by individual legislators having the power to determine whether or not a state assembly, a legislature, General Assembly is going to consider a bill that's a easy way to kill it, because if the senators and representatives don't see it, there's nothing, nothing you can do.

Give me kind of a final message.

What would you like people to know at this point?

- Well with the overwhelming support of this nationwide and even in some of those very RedState, for the record, I'm registered as an independent.

So I, you know, Republican Democrat and we have had bill sponsors that are Republican primarily, they'll be Democrats, but there's certain states where we have Republican sponsors of this legislation.

And so I am hopeful that state by state, step by step, vote by vote, that we will make progress and I guess the big take away being that this program, this legislation it, it does not result in more people dying, it simply results in fewer people suffering.

That's the whole-- that's the crux of this whole thing.

These people are terminally ill, they are dying.

Just gives them the opportunity to have a little bit of input into how their final few days on this green Earth might play out.

So with that, it's the way I honor Brittany's legacy and keep my promise.

I'll keep at it.

- All right, Dan, thank you so much.

- Thank you, again, I appreciate this opportunity.

- You bet.

That was Dan Diaz.

Make sure you go to some of the websites.

Some of the links that we've provided for you to get more information.

I'm Aaron harbor.

Thanks for watching.

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