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July 30, 2024 56 mins
Welcome to the end of the beginning! Our first season was so much fun. We appreciate you coming along for the ride, and extend so much gratitude for all of our season one guests! We look forward to many more guests and conversations to normalize death. Be sure to rate and review the show, and share it with others so we can all have a better dying and death experience. You can reach us at DeathHappensInsiders@gmail.com; Death Happens Podcasts on all places you find podcasts are found as well as IG, FB. and TT. A video option can be found on YouTube at https://www.youtube.com/@DeathHappensInsiders Hospice Nurse Penny on the socials: @HospiceNursePenny Halley on Instagram, TikTok, and Facebook: @HospiceHalley Our intro music was composed by Jamie Hill (misfitstars.com)
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Episode Transcript

Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
- Yeah, I feel great.
I think it was a, it wasreally fun, you know,
learning curve on lots of things.
I think, you know, lookingat our first episode
and then going throughand up to the last ones
and going, we did get better at this.
Even the, even the opening,you know, I felt like
as I'm watching the oldvideos, I see that opening.
I'm like, welcome to theDeath Happens podcast.

(00:22):
, I think we're gonna hit our
stride for sure next season.
And I think we're on ourway in in this season,
as this season is wrapping up.
Welcome to the Death Happens Podcast,
an insider's guide to dying.

(00:44):
We're your insiders.I'm Hospice Nurse Penny.
- And I'm Halle Hospice Social worker.
- Today it is going to be just us.
We are each other's guests, ,
and we are gonna betalking about medical aid
and dying, AKA death with Dignity.
And then we will be following that up
with our season wrap up.

(01:05):
I know. So first, let's,let's hit the, uh,
medical aid and dying.
Actually, let's start with this.
When we spoke before lastyear on your podcast,
I talked about medical aid and dying,
and you told me that you prefer the
terminology of death with dignity.
Now, I, being a longtimehospice worker also,

(01:26):
and, um, probably paying attentionto the man felt that, um,
the, the, uh, um, concern thatmany hospice agencies have,
that death with dignity kind of implies
that people can't have adignified death on hospice.
Made that kind of, notas popular of a term,
but you had a really great take on,

(01:48):
on why we should callit Death with Dignity.
So I wanna, I want you to talk about that.
- Well, it's funny you say that
because it has been a whilesince we did that podcast,
and, um, if people do wanna know,
I've never mentioned it on here,
but my individual podcastis Someday Will All be Dead.
And Yeah, my opinion on thathas varied actually since

(02:09):
that conversation.
- No, it's different, right? Well,
- Not fully.
I, so the reason that I hadmajor concerns initially, first
of all, the law in Washington State
and many states actuallystates death with dignity law.
So that's number one.
Number two, though, ismedical aid in dying

(02:31):
can really sound similar to medical
or physician assistance in dying.
And I felt like it reallylent itself towards the outcry
of people that don't agreewith this law anyway, which is
that your euthanizing people
or its assisted suicide, et cetera.
And so medical aid
and dying really felt more like that

(02:52):
to me initially. Mm-Hmm.
- - Since then, since many conversations,
and also because federally, not federally,
but like across the states, medical aid
and dying is becomingmore of the preferred term
for language in manuals,in conversation, whatnot.
I've started to accept

(03:13):
that it's not gonna be death of dignity.
And I totally heard your point.
I, hospice care should be death,including dignity. Mm-Hmm.
. Anyway, so I get that.
I do, I do still waiverwith myself and especially
after, we'll get to our guestshere, wrap up in a moment,
but especially
after hearing that the lawin Canada is called medical

(03:34):
assistance in dying.
So again, I feel still thatconfliction of, is it too close
to suicide, euthanasia and thepushback that we get anyway.
- And, and I remember when itwas called past p physician
assistance and suicide orphysician assisted suicide.
Yeah. And, and hated that.Have always hated that.

(03:57):
Um, Mm-Hmm. ,it's definitely a stigma,
a stigmatized way of looking at it to say
that it's assistance and suicide.
And I guess, so one of themost important things that
I want people to know about it,
and I get asked about it a lot, is that
we don't consider it suicide.

(04:18):
Suicide is not what goes onthe death certificate. Mm-Hmm.
, what goes onthe death certificate is the
person's terminal illness, whatever,
actually caused their death
because we consider thatthe cause of their death
and that life insurancepolicies will still pay out.
That's a, a major questionthat I get. Mm-Hmm.
will lifeinsurance pay, and that is
- Written into the law.

(04:38):
Mm-Hmm. . So, yeah.
- Yes. Yeah.- Yeah.
So let's, let's kind of backtrack
and go just kind of review.
I wanna review how this law came about.
So this actually started in Oregon.
They beat us to something, um, back in 1997.
So this isn't new.
This is something that'sbeen around for a long time.
But they really were thefirst state to pioneer

(05:00):
legalizing this assistancein terminal patients.
And we'll get to the criteria in a moment,
but terminal patients being able
to request life ending medication,
that ultimately is what this is.
- And was Dr. Jack Ian theimpetus for that? Was he the,
- I imagine that he probably had some

(05:21):
influence in the thought of we need
to have something different
because obviously if people remember
younger people might not remember.
- Yeah. Some peoplemight not know. I mean,
I feel like everybody knows who,
because they even use Kevorkian as a,
a verb sometimes. Yeah.
- So he actually actuallyphysically assisted people.
So he would have an iv, hehad a machine, funny enough,

(05:46):
it was to me, similarto, uh, what looks like
for the death penalty cases,
but clearly the patient was willing
and they were being videotapedand consenting and all that.
So very different, uh, in that aspect.
But it had a machine with the formula,
and he would push thebuttons and, you know,
and give the medication,

(06:06):
which is very differentthan what the law is now.
But yeah, I wouldn't be surprisedif that whole, you know,
he ended up going to jailbecause it wasn't legal .
So Yeah. If people wanna look that up,
that was a whole sagain US history. Mm-Hmm.
- .- So Washington State followed up,
but not, I thought,
I always thought in my mind itwas only a year or two later,
but we actually didn't do it until 2008,

(06:29):
so almost a decade later.
And that was Initiative 1000.
And we're focusing on Washington
because that's where we both are.
This is the law that we're familiar with.
And up until last year, 2023,
the law had a 15 day waiting period,
then a second 48 hourwait for the prescription

(06:50):
after you were done completing all the
things you needed to do.
And then if everything lined up,
you could actually get it done in 15 days.
But it was pretty tight. Youhave to have the two doctors.
They both have to agreethat you're qualified.
- Right. And determine that you are
of decision making capacity.

(07:11):
- Yes. And- That it's your decision
. Yes. Right. Yeah.
- Yeah. So you have tohave a terminal illness,
but it can't just be any terminal illness.
You have to have a terminalillness with a prognosis
of six months or less.
Right. We'll come back to that.
'cause I have more to sayabout six months or less.
But, um, yeah, me too.That part hasn't changed.
So two qualified doctors deciding

(07:33):
and agreeing that you havea prognosis of six months
or less, that you are anadult over 18, that you are,
uh, able to request thisyourself with no undue influence,
that no one's influencingyou to do this Mm-Hmm.
. And that you're able
to self-administer thislife ending medication.
Now, we'll also comeback to self-administer

(07:54):
because there have been somechanges over the, the years.
But basically you have to beable to either push a button
or swallow this medication.
Then in last year, 2 2023, they amended the law.
Frankly, a little bitsurprised that it got amended,
but I also personally think it needs
to be amended even more.

(08:15):
So the new amendment,
the wait period went from15 days to seven days.
Now people that don'thave a terminal illness
or haven't been through thiswith their loved ones 15 days
might not seem like a very long time.
And what was the big deal? So Penny,
I feel like you candefinitely speak to this.
You've had patients come onwith a really quick decline.
- Yeah. So I had a patient who wanted

(08:36):
to do death with dignity.
He had liver cancer,
and he was in the processof doing the paperwork
and was in that timeperiod where he needed
that 15 day waiting period.
And part of the symptomsof liver cancer, one
of the symptoms is cognitive impairment.
Uh, he became very confused, agitated,

(08:58):
and was unable to complete the process.
Yeah. Like wa wasn't able tobe determined to be eligible
to be able to complete the process.
And he ended up so agitatedthat we had to transfer him
to a hospice care center anddo palliative sedation for him.
Mm-Hmm. .Mm-Hmm. .
And his husband was so distraught.

(09:21):
He just always, every day Iwent to see him, he would say,
this is exactly what hedid not wanna have happen.
Yeah. It was just horrible for him.
And in the end, you know,we sedated my patient
until his death Mm-Hmm.
. And I couldn't help but
think, what's the point?
What is even the point? He'sgot zero quality of life now.

(09:43):
Mm-Hmm. . He iscompletely unaware of anything
that's happening him around him.
He's just, you know, beingallowed to die naturally
through this period of time,
but heavily sedated it, it just,it didn't make sense to me.
So, yeah. That, that was a really horrible
experience. Mm-Hmm. seeing that.

(10:03):
- Well, let's take a break just real quick
and talk about palliative sedation.
So we've mentioned that acouple times during the season,
and we haven't reallystopped to talk about it.
I know in our agency, we're very careful
around the use of that language.
Mm-Hmm. That it's notnecessarily a menu item
that people just ask for,
but that we are treatingsymptoms up until the point of

(10:26):
sedation if needed.
And also possibly respitepalliative sedation
where we're giving people a break.
- Yes, yes. But- Can you elaborate a little bit more on
the nurses side of things as far as
what is palliative sedationand when would you use it?
- Yeah. So first of all, when,when I started in hospice,
like when 19 years ago, wecalled it terminal sedation.

(10:47):
And, uh, that was reallynot a very good name for it
because it, it impliedthat we were putting people
to sleep to end their life.
And that's not, that'snot what we were doing.
Palliative sedation isusually done for people
who are terminally agitated.
That's when we mostly do it.
It can be done for intractable pain,

(11:08):
but usually it's terminal agitation.
And we have done everythingthat we can possibly do to try
to manage their symptomsand nothing is working.
Mm-Hmm. .And if a patient is asking
for palliative sedation,then they're not qualified
for palliative sedation
because somebody who is needing

(11:29):
to be palliative palliatively sedated is,
they're just unable to, they'reso close to the end of life,
you know, that they can't even communicate
that need to us anymore.
They may have talked aboutit ahead of time, like,
if things get really bad, Ijust want you to just put me
to sleep until the end.
Mm-Hmm. Um,
but typically when we'remaking a decision, which is,

(11:51):
like you said, a verydifficult decision to do,
palliative sedation,
the person is usually days awayfrom the end of their life.
I haven't ever really seenit go on longer than five
or six days at the most.
Yeah. Usually it's just a few days.
They're just really right atthe end. Mm-Hmm. .
But it, it is almost alwaysfor terminal agitation.
And the drugs that we use arelike a benzodiazepine infusion

(12:15):
that we can do, like a versedinfusion, uh, which is used
for conscious sedation.
If you go get a colonoscopy,oftentimes they'll,
they'll give you versed and fentanyl.
We can also use phenobarbital. Mm-Hmm.
for palliative sedation
and propofol not very common,
but I've seen propofol used also
for palliative sedation. But,
- But Good.

(12:36):
Thank you for that. I just, I, mm-Hmm.
, it's been onmy mind that we probably need
to expand the definitionof that sometimes.
Yeah. I think we starttalking in our medical jargon
and forget to explain things.
- Yeah. And the intent isnot to end the person's life,
but there is something calleda double effect, which means
that yes, in the processof sedating somebody,
it's po it's possible that
that death could occur slightlyfaster because of that.

(12:56):
Yeah. Slightly faster. Yeah.Perfect. Not because of that.
We'll say slightly, slightly faster.
And the cause of death, justlike with death, with dignity
or medical aid and dying, the, the cause
of death is still theperson's terminal disease.
- For sure. So we'llbacktrack to where we were
before I derailed us in this conversation.
. So the 2023 amendment

(13:18):
to the Washington law, thatchanged from 15 day waiting
period to seven day waiting period.
And during that waitingperiod, they also removed
that extra 48 hour window.
So it used to be that once youdid your final oral request,
that you would have towait an additional 48 hours
before you could get your prescription.
That could have been donewithin the 15 days if you were

(13:38):
able to line up everything perfectly.
Now you don't have toworry about that at all.
It's just 15 days from thestart of your oral request is,
uh, used to be, and now is the minimum
seven days waiting period.
So when I say waiting period,I just like to clarify
that seven days is fromyour initial oral request,
but it doesn't mean you'regonna get all the steps done.

(13:59):
So you have an initial oral request,
you have two different doctor consults,
you have a second oral request,
and you have a written request.
And even if you get allof those things done,
even if you get yourprescription at the pharmacy,
even if you pay for it
and pick it up, which willcome back to that too,

(14:19):
you don't ever have to do it.
It is a minimum wait period.
It's not a, you have to do this
after seven days period.So that is the wait
- Period.
No, that's good to know. Hey,
I wanna say somethingabout the oral request too.
Yeah. Because, you know,when we say you first need
to make an oral request, that kind
of sounds like this formal thing.
Right. And in reality, all you need

(14:40):
to do is state yourintent to your provider.
And if they document thatin their medical record,
it could even be justsomething like, you know,
Mrs. Smith says that she intendsto do Death with Dignity.
You can request a copy of that record
and that counts as your oral request.
So it's not like this formalthing that you have to do,

(15:00):
it's just basically saying, I'm gonna do,
- Or you're interested in itor interested in information on
- It.
Yeah. I'm interested in information on it.
I'm thinking about it. Youknow, that that can count
as your oral request.
- You can say, I want tostart the clock on my request,
but make sure, as Penny said, make sure
that it gets documented.

(15:21):
Because if it didn't get documented,
it didn't happen. Correct.
- Mm-Hmm. .- So
getting a copy of your records.
- Write, write that down.Yeah, write that down. ,
- I- Tell you something, you write
down, especially with MyChart
- Down.
Yeah. Especially with MyChart,
- That's helpful. Yeah. Yeah.
- So you can get a copy yourself,
but make sure that they write it down.
And if you know, and ifyou're only using MyChart,
you don't get a hard copy oryou get the aftercare summary,

(15:43):
make sure you look and see,because you can stop right there
and say, Hey, we did talk about this.
You need to make the notein this. Put it in there
- Chart,- Think about it.
Otherwise you'll have to startyour clock again. Mm-Hmm.
. Which forsome people might be fine,
you might have plenty of time,
but if you have a super aggressivelate diagnosed situation,
time might be of the essence.

(16:04):
Yeah. Now the new changealso includes that it used
to be only MDs
or dos, certain degrees ofmedical doctor could do this.
Now it can also be a RMPs,
which is advanced registerednurse practitioners
or PAs, physician'sassistants, which is really,

(16:24):
that was targeted at the more rural areas
that don't have accessto all the doctors, like
that are only MDs.
- Right.- Plus most of the time, you know,
your doctor might be an A RMP
or a pa and they know you better.
Right. There might be anMD overseeing the clinic,
but they're not your person. So.
- Right. And if you're in arural area that has, like,

(16:45):
for example, a Catholic organization
and that's the onlyhealthcare organization
that's in your area, yeah.
They're not gonna do it for you. So Yeah.
- Yeah.- Be able
- To have more options.
That's very important. .
And then, like I said, theextra 48 hours was removed.
So things to note about thislaw, so anyone can opt out

(17:09):
of the participating.
So as Penny was indicating, some
religious based organizations,whether it be doctors,
clinics, hospitals, pharmacies, even
anybody has the right to opt out of this.
It's not a requirement,even though it's a law
that people do havethe right to access it.

(17:29):
Clinicians have the right also to opt out.
And so it's important whenyou're considering this
to ask your, whoever's helpingyou, your clinicians, your
hospital, whatnot, how much ofit will they be involved in?
Or will, are they willing
to now they should at leasttake a first, so request,
like document that you noted it,

(17:50):
but they might not be willing
to do the re the additional steps.
- They actually have to have a policy.
Now the state requiresthem to submit a policy.
So every, every, in Washington, every
every healthcare organization is supposed
to be putting a public policy about
what they will and won't do.
And it's, it's, they actually

(18:12):
provided a, a document for us to fill out
that says, we'll do this.
We won't do this, we'll dothis. We'll, we won't do this.
Mm-Hmm. . Andso it should be publicly
available to find that out.
- Yeah. I imagine If it's not
already, it will be pretty soon.
I know that was part of thenew change as well. Mm-Hmm.
- ,- There are alternate forms of ingestion.

(18:33):
So we talked about peoplebeing, having to be able
to self administer.
So the normal route, thismedication is compounded,
it's multiple medications,it's changed over the years
and it does continue to change.
Right now it's about four orfive different medications.
And it comes in a powder form
and you add a liquid toit and you shake it up.

(18:54):
And then generally you'll ingest it
by drinking it, by swallowing it.
So the, one of the things
to consider is how is your swallow?
Are you able to swallow? Areyou having issues with nausea?
You do get some pillsbeforehand that are antiemetics,
so anti-nausea medication,and to relax your system.
But that is a concern.

(19:16):
So we wanna make sure, for people
that have difficulty swallowing, know that
if you have a feeding tube,then you can actually have that
ingested with a feeding tube.
You just have to beable to push the plunger
if you have the ability to swallow.
But let's say you magically qualify
and have a LS that happens challenging

(19:39):
because a LS usuallycomes with complications
of cognition that you'renot able to do it.
But I have had people thatdon't have that symptom,
they have other issues
and so they're able to ingestit, but they can't hold it.
So you are able to have someonehold a glass of the straw
as long as again, you are able
to actually suck it down and swallow it.

(20:00):
And lastly, there's theoption of the Macy catheter,
which is a rectal Nope,
- Nope.
I have to stop you. The Macycatheter is not an option.
A rectal Foley catheter
or a Foley catheter inserted rectally.
But the Macy catheter is too small. You
- Are right.
I, I am glad you brought that up.
I totally forgot about that. Yes. Rectal

(20:21):
- Catheter, it has to be a,yeah, a large, like I think a,
I wanna say like a 16French or no, an 18 French.
I think it has to be an 18 French. Yeah.
- Yeah. I think you're right. Yeah. Yeah.
- Pretty big Al
- Um, 'cause of the amountof medication that you're,
you're putting there, but rectal catheter.
Mm-Hmm. Yes. Thank you for that. Yes.
I always forget that .
That's why we have nurses totell me these things. .

(20:42):
Uh, so yeah, rectal catheter,
it's not necessarily thebest option for, for this.
And it may take a little bit longer.
That's another challenge.But again, it's an option
that may be availableand you have to be able
to push the plunger toput the medication in.
- I think I would optfor that though myself,
because the medication burns going

(21:04):
down and it
- Doesn't taste great.
Um, yeah. And it does burn. Um,
- It burns and they canfollow it with like sorbet.
Uh, apparently like you can'tdo a milk product after,
but you can do like a sorbet to kind of,
but I would rather justlike give it to me rectally.
I don't wanna have to swallowit if it's gonna burn.
I don't want my last drink
unless it's an alcoholic beverage.

(21:25):
I don't want my last drinkto burn going down
- .
Well, funny you mention thatyou can actually have it
with alcohol, although Idon't know that I'd recommend
that you drink it withalcohol probably as a chaser.
Um, we often use popsicles tokind of freeze out your mouth
and throat and using it,mixing it with simple syrup
does tend to help a little bit.

(21:47):
Mm-Hmm. .Um, but you're right,
it is a challenge for burning.
- Yeah. Halle, are you gonna,
you've been present, correct? I have.
- Mm-Hmm. multiple times. Yeah. Yeah.
- Are you gonna, are yougonna give us a story?
Because I think thatpeople want to know like
what is it like when a person does this?
And maybe you have more of thetechnical stuff you wanna go

(22:08):
through first, but I knowpeople are gonna wanna know
what is it, what is it like?
And people always willask, how long does it take?
And death takes as long as it takes
- . Well, that's still true.
- Yes. Yes. - I will give astory, um, here just shortly.
So lastly, as mentionedpreviously, rigorous criteria,
they are ongoing.
Um, like competency, likePenny mentioned, we continue

(22:30):
to ask, you still have to beable to, up until the point
of ingestion, you have tobe able to cognitively say,
so unlike our previous guestjta, we do not have a law
that says you can make thisarrangement with your doctor
and they can help you with it,
or someone else can help you
with it if you become incapacitated.
That's not, nor I doubt evergoing to be a thing in the us.

(22:52):
Hmm. The six monthsfor hospice, six months
or less prognosis for hospice.
That's very different than the six months
or less for the death dignity law.
So I want people to hear me say this
because it's confusing, right?
You come onto hospiceand you're like, well,
they told me I have sixmonths or less I should

(23:12):
qualify for this law.
Not necessarily.
So hospice, six months
or less, it is likely if yourdisease trajectory is this,
but it's a little squishy.
We have a bit of a gray area
because there can be thingslike pneumonias or falls
or UTIs, things
that might bring peopleon a little bit earlier.

(23:32):
And that's why we say you mightstay on hospice for a year
or two years, whatnot.
We still have to markthat you're qualified
and that you meet those criteria
every few months, et cetera.
Penny certainly could talkto that quality measurement
and, um, certifying people,recertifying people.
But the six months or lessfor the death of Dignity Law,
at least the people, thedoctors that I've worked with

(23:55):
that isn't much tighter,
much more certain six months or less.
That's what I've found. So talkto the docs. Just be aware.
If it's something that your loved one
or yourself is interested in,
then there might be a littlemore stringent criteria
for the six months or less part.
Uh, and then just because again, just
because someone getsa prescription doesn't

(24:16):
mean that you have to take it.
It is not free. Right.Insurances do not cover it.
Currently it is about $800.
It used to be way more expensive.
It used to be more like3000 . So Mm-Hmm.
. Butthere is also, you know,
there are groups in our state,
and I'm sure other statesthat have foundations

(24:38):
that can help people that can't afford it
because it is a justice issue.
As a social worker, Icertainly feel that that $800,
it is outta reach for people sometimes.
But there are foundationsthat can help people.
So it's expensive. Bottom line.
And then the last thing toknow as an interesting one too,

(25:00):
you don't actually haveto tell your loved ones.
You're doing this. It'srecommended. Mm-Hmm.
, we want you to and we want you to not
because we want you to be judged
or to have to hear you'redying by suicide, but
because we want you to havethat support, not only support
for you, but support for them afterwards.

(25:21):
If you were going along
and you're pretty early onyour journey in that six months
or less, and you die suddenly Yeah.
And you haven't had that moreprolonged transition to dying,
it's going to be a little harder
for your loved ones to grieve.
If, especially if they find out
later, we wouldn't tell them.
Yeah. But it, we encourageyou to tell them,

(25:43):
but you're not required to.
So that's something to know.
And yeah, as Penny said, it'snot on your death certificate.
So the thing
that's on your death certificateis your terminal illness.
Whatever you're dying from,that is what you're dying from.
So there is, there hasbeen an increased use
in the use of this.

(26:04):
Not only accessing it andgetting the prescription,
but actually using the medication.
We've definitely seen an increase,
especially in this last year or two.
I'd say people have been doingit since I've been working in
hospice for this whole last,you know, 10 years, nine years.
But it definitely has increased.
And I think part of that'sjust awareness that more people

(26:25):
that other people know are doing it,
or they've heard about it
or they've heard about the law change.
So that's, it's interesting
because sometimes it's a challenge.
People come to hospice right at the end
and they come to us saying,we wanna access this
and we wanna access it right now .
And uh, there are steps wecan't skip over the steps.
- Right. And there are more hospices

(26:47):
that are getting involvedwith this now too.
I know that. Let's talkabout exclusions though.
Why, why are some people unable,
even though they havea terminal condition?
Why are they unable to usethe death of Dignity law?
- Yeah. Well of course theexample you gave was great.
So someone might've started the process
and then become incapacitatedor have a change in condition.

(27:09):
Mm-Hmm. thatdoesn't allow them to utilize it.
They might not be able to swallow
and not have a feeding tube.
And also maybe they hadradiation in their pelvic area.
And so a rectal catheterwould not really be advised
because you're not gonnahave the absorption
that you would in the rectum.

(27:29):
So those are kind of the physical aspects.
And then if you have adisease such as dementia,
- Dementia or- Parkinson's Mm-Hmm.
or Huntington's. Mm-Hmm.
or mostly a LS.
If you have a disease that bythe time you get to six months
or less, you are not able to cognitively
or be mentally competent toask for that medication, then

(27:52):
you are not able to use it.
- Right. And for those people,there is an alternate thing
that they can do that I know end
of life Washington is helping with.
And that is called v said
voluntary, stop eating and drinking.
Mm-Hmm. wherea person with dementia,
once they get their diagnosis,can make a decision to
stop eating and drinkingto end their life.

(28:14):
Typically when they dothat, it takes about seven
to 10 days before death happens.
And there are ways that, you know,
they can be supported through that.
Sometimes it's, I, Iwouldn't be able to do it
'cause I'm a foodie, so Iwould never be able to do that.
. I think also that trying
to de decide when the time isright is gonna be a challenge

(28:35):
because, you know, youas you start to decline
with your dementia willnot recognize that decline.
And it would be reallyharder to know like,
when is the right time to do this?
Mm-Hmm. . So
that would be a challenge. If you're
- Gonna choose choose visa anyou're gonna leave a lot more
life on the table
because you have to be able to make

(28:55):
that decision consciously.
And there are a lot of steps.
We definitely, definitelysuggest more support, not only
for you, but for your family.
Mm-Hmm. , a lotof hospices won't take someone
that's just has vaid untilthey're several days in
and are starting to be more unconscious
because they don'ttechnically qualify. Right.

(29:15):
- Right, right. They don't qualify. Yep.
- And then the other thing is
that we recommend peoplemake videos for themselves
and their family membersto watch to remind them
- Why they're doing it.
And that they want to
do it. Yeah. Why they're doing it. Mm-Hmm.
- . Because thereis a point where you start
to get confused and youstart to get dehydrated.
And I'm pretty surewe've talked about this,
I know you've talked aboutit in your TikTok videos

(29:37):
and Instagram videos, butwhen you're going through the,
I haven't found a better phrase for this,
but natural dying process.
Without medical aid dying, youdon't really get dehydrated.
You don't starve to death. Right? Mm-Hmm.
your body is shutting
down and not wanting that.
But when you're choosingVaid, you are doing a bit of
that dehydration andneglecting to eat, to eat food

(30:01):
and get, uh, give yourself calories.
And so there will comea point where you start
to get more confused oryou may ask for fluids.
And so you want, you don'twant your family to have
to say you said no.
Right. That, that feels very different.
That's where that video cancome in handy for sure. Yeah.
Yeah, yeah. So thattakes a lot more support,
a lot more preparation, I feel like.

(30:23):
And it's a lot harder path.
So, but it is, uh, it's available
for people just much earlier upstream,
because by the time you get to six months
or less with those other ones,
you're just not gonna qualify.
So personal experiences, ,
I have attended, I've hadthe honor to attend several

(30:43):
ingestions of the Death
of Dignity medication over the years.
And I say that it's an honorbecause I really feel that way.
I've actually started toincorporate into my language
as I'm talking to patients
and family members, as I'mtalking them through the process
and, and what steps they need to take
and what it looks like on theday of that, I'm telling them,
even though you hear mesay this in a very kind

(31:07):
of clinical straightforward way,
I'm taking this very seriously.
I don't take this lightly at all.
And I know it's hard for you.
And again, it's likewe've talked about before.
It's not my person, but Irecognize the gravity of
what we're talking about in the situation.
So I just wanna honor that space.
And also as a socialworker, it's, you know,

(31:28):
in my prime directive, if you will,
to honor people's self-determination.
And so if this is what they want
and they're eligible for it,
then I absolutely supporttheir choice to do it.
And I would encourage people,
even if it's not in their value system,
and even if they wouldn't doit for themselves personally,
that you're, you're honoringthe other person's choice

(31:48):
for their, for themselves.
So what does it look like?
So once you go through all the steps
and you have your medication on hand,
then the day of you don't eat, uh,
or drink really anything,at least four hours
before you can have water or black coffee
or popsicles, like you said,

(32:09):
you can have a sorbet right before
or during to kind of takethe taste outta your mouth.
But be careful with sorbets
because some of themdo have dairy in them.
It's sneaky. Mm. So
that's why we would just recommend those,
those popsicles on hand.
Many places, it depends on their policy.
So make sure you talk to your hospice.
If you're working with one,I recommend you work with one

(32:30):
so you have that extra support,
but you don't have tobe on hospice to do it.
But I would definitely recommend it
because there are four timesthat you have to document
for your prescribingdoctor to notify them.
They do, to keep trackof the times for the law.
So that part is trackedjust the times to make sure
that everything is workingthe way it's supposed to.

(32:52):
So no food or fluids for four hours
before you take your anti-nauseamedication, about an hour
before you're going toingest your medication.
And during that time,
I always encouragefamilies to have a plan.
Are you going to watch your favorite
movie or listen to music?
Or do you not want verymany people, you know,
we've talked about all thesethings ahead of time as

(33:14):
who do you want there to be with you
or do you not want anyone to be there?
You know, and what, whatthat's gonna look like.
And once we get to the pointof ingesting the medication,
then we're gonna make sure
that you are in a moreupright position, head up
as elevated as we can.
So hopefully you have ahospital bed that's ideal.

(33:35):
Um, but I have had peopletake it in a recliner
or in a bed that's justpropped up with pillows.
But we wanna make sure thatyou are helping gravity. Right?
You're gonna use gravityto your advantage.
We do not want you totake a very expensive nap
in the entire time I've donethis, which is many times,
and with everyone elsethat I've worked with

(33:56):
that has participated in this
only one time have Iever had someone actually
regurgitate the medication.
I think it was kind ofa post death reaction
because they were gone right away
or right then luckily.
But I've never had anyoneactually throw it up and not die.

(34:19):
The end result is death.
You are taking life ending medication.
So once you take themedication, you have a, you have
to drink it in about one to two minutes.
It's only about two anda half ounces of fluid.
And once you drink it,it's, you wanna drink it in
that couple of minutes becausein about five to 10 minutes,

(34:42):
usually closer to five,you are gonna become sleepy
and you are going to go into a coma.
And so if you don't get allof your medication down again,
unlikely, I think as longas you get the majority,
90% of it down, it's gonna work.
But mm-hmm, , wewanna make sure you're paying
for this, this is what you want.
We don't want you to wakeup from a very expensive nap

(35:02):
and be even more mad.
You're still alive. So drink
all that down one to two minutes.
It's more than enough time.
Usually we'll have you drinkwith a like medium sized straw.
So get it as far back in your mouth
and not, doesn't taste good.
We'll have that popsicle.
Or maybe I've had someone takea shot of scotch, you know,
afterwards, do a cheers with their family,

(35:23):
and then you're gonna relaxand you're gonna go to sleep.
And at that point, thenormal quote unquote, um,
active dying process is going to happen.
It's just going to happen a lot
faster than it normally would.
So in that first couple ofminutes when someone's asleep,
you're gonna start to seethose breathing changes.

(35:43):
You're gonna start tosee the color change.
So you may see their lips turn blue,
obviously they're gonnabe completely unconscious,
so there's not gonna beany pain involved in this.
They're, they're completely comfortable.
And then the breathingchanges can be anything.
I have seen some of the,um, guppy breathing.
So kind of the kind of breathing

(36:06):
and very, very, I would say 99%
of the time you're gonnahave that ethnic breathing.
So you're gonna have those pauses,
and then you're gonnahave the kind of gasp
after a pause so that wewarn people about that.
Because again, scary right. Even Mm-Hmm.
in without medically
and dying, when you hearthose breathing changes at

(36:28):
the end of life, it can be scary.
And so you wanna reassure
- People call that, I callthat an expiratory sigh.
That's what I refer to that now.
'cause it sounds like a moan.
And I used to think it was a moan. Mm.
And not everybody does it.
But when I had patientsthat were doing that,
I would give them pain medication
and I'd think, why isn't this pain
medication working ?
And then I just came torealize it's just a noise

(36:49):
that they're making and Mm-Hmm.
. So nowI think of it as more
of a sigh than a than a moan.
- I don't usually hear that.
I know what you're talking about.
Um, I don't usually hear anoise as much as just a breath.
Mm. Um, and, and more of a gasp,
like your electricalsystem in your brain has
said, Hey, you forgot to breathe.
Mm. And so it's just a reaction.

(37:10):
And so I'm reminding people like,
Hey, the body's shutting down.
It's going to say you forgotto breathe. It's not painful.
They're not in pain.
And then that process,like you always say,
death is gonna take how long it takes.
You're taking this medicationusually on average, your
one to two hours is pretty standard.

(37:33):
I've seen it go longer though.
There are a lot ofdifferent scenarios where
maybe you have tumors
or other things going on in your gut
that are gonna slow your gut down.
And so that digestion, itslows everything down. Mm-Hmm.
. So sometimesit will take seven hours,
even even with a new medication,it can take longer people

(37:55):
with heart conditions.
Anecdotally, almost always,15 minutes to an hour.
I've also seen people that were healthy
otherwise had a tumor in their brain
and also had had painsignificantly for quite a while.
So had a pretty good history
of opioid use for that pain control.

(38:16):
And so that also took quite a long time.
I think that one tookaround nine hours. Wow.
So we do wanna prepare the family,
like on average it'sgoing to be fairly quick.
And also you need to have a plan
because this can take longer
and it's gonna take how long it takes.
Mm-Hmm. , I can't predict.
I can tell you my experience,
I can tell you the things I've seen,

(38:38):
but it's, it's not always the same.
Every body has a different process.
- Just like with a naturaldeath on hospice. Yes. Yes.
We don't know until ithappens, you know? Exactly.
Give you our best guess. Buteven when they're taking a
medication that is meant toin their life, we still have
to guess, we still don't really know.
I did hear a doctor, um, thatsaid he knew of one that went

(39:01):
for 14 hours, which wasquite a long time. Yeah.
- Uh, I mean, really longtime ago, it's been, I
wanna say right when Istarted around that time,
there was one person that took 23 hours.
- Oh wow. But- That medication is not even the same
medication that we have anymore.
It's not the same properties
and not the same medication concoction.

(39:24):
And I don't know whatwas going on with that.
I don't know if they were justreally early in their process
or what, but that'san, an extreme outlier.
- Okay. So, you knowhow we know that people
who are dying a natural deathon hospice can sometimes
it seems like, choose their time

(39:44):
and wait until family membersleave before they die.
I wonder if it's kind of the same thing.
You know, it seems likepeople would probably tend
to more even want tohold vigil with somebody
who was doing death with dignity.
Hmm. And I, I wonder like,is that what caused somebody

(40:05):
to stay longer becausepeople were vigilant
and had they left the bedside,
maybe the person would've died.
You know what I mean? Kindof makes you wonder. Yeah,
- That's a good question.
I, I have had somewhere
after a while I've had themrotate out of the room.
Um, or, or just give some time, um, in
and out if it's taking quite a long time.
But that's, again, pretty unusual

(40:28):
and pretty, I would say 75, 80%
of the ones I've attendedhave been right either an hour
or even like itseems like five minutes.
Not even five minutes. So Yeah.
And that's a good question though.
We certainly do see it with a, a non DWD

(40:48):
- Death.
Yeah. . Yeah. All the time.
- So yeah, that's, um, that's how it is.
And then everything else isjust as we would normally do.
So we tell people, you can take your time.
There's not an emergency.
If you wanna spend time with your
loved one, you certainly can.
Um, and yeah,
then we call the funeral homejust like we normally would.

(41:08):
- And currently it's available in
how many states did we decide?
- 10. Oh, uh, yeah, it's 10 states
and plus Washington DC Socurrently as of this recording, so
that is May of 2024.
It is, uh, Oregon, Washington,Maine, New Jersey, Vermont,
New Mexico, Montana, Colorado,California and Hawaii

(41:30):
and Washington dc. So, and
- Let's talk about, uh, Vermont
and, uh, Oregon whorecently both passed laws
that you do not have to be a resident
of their state in orderto, uh, use their death
with Dignity law there.
So that is a, a huge deal
because there are many, manypeople who live in states

(41:52):
that don't have legalized, uh,medical aid and dying Mm-Hmm.
and have to goand travel and, uh, and can now
and can go to Oregon or can go to Vermont.
Previously they couldn't. So,you know, there was a, a story
probably 10 years ago
or so of a young woman
with brain cancer who wanted to do it.

(42:14):
And do you remember, you knowwho I'm talking about? She's
- The one that went to Oregon. She,
- She was one of the first, yeah.
She went to Oregon. Shebecame a resident of Oregon,
so she had to move to Oregon.
And I met her husband, uh,at a conference last fall.
And he still advocatesfor medical aid and dying.
He does a lot of work withcompassionate choices. Mm-Hmm.
. And, youknow, he talked about her

(42:35):
and how she, I wanna say her name was,
- Is it Brittany?
- Brittany? It was Brittany, yeah. Yeah.
And they had to like, literallypack up and move to Oregon
and become residents of Oregon,which took a long time so
that she could actually access that law.
And, and now thankfully, uh, for people

(42:55):
who don't live in a statewhere it's legal, they can go
to Oregon if they're on the West Coast
or Vermont, if they're on the East Coast,
and be able to do medical aid and dying
- One.
And still, you know, the social work part
of me is still like,that's still a privilege
to be able to even travel to that.
So a lot of people can't, physically can't
or financially can't,
or they don't, you know, the rest
of their family can'ttake time off of work.

(43:17):
And so it's, I'm super gladthat it's available. Mm-Hmm.
. Um, I hope baby steps
that someday it will be available more,
- More readily.
Yeah, I do too. I wish itwas available federally.
I think every state shouldhave legalized medical
assistance in dying.
And the drugs should always be affordable.
I don't foresee a time wheninsurance will ever pay for it.

(43:39):
There's, there's no waythey want the stigma
that's gonna be attached to that.
Like Yeah. It's cheaper justto, to pay for the death
with dignity, uh, meds thanit is to, to let them go
through their treatment for their
disease. Not gonna happen.
- Not in our lifetime anyway. .
- No, no, no.
- Well, let's do our showwrap up our season wrap up

(44:01):
what great guests we had.
- We did. We did.
It's, it's hard to, Iwas thinking about like,
who is my favorite
and it's, it's a challengeto think about who I, I think
I really, really, really liked Katrina.
Yeah. And, and, and Faith and Dr.

(44:23):
Faith, uh, because theirperspective was in such
a different realm from ours, you know?
Mm-Hmm. .But sa but the same too,
like related Mm-Hmm.
Yeah. Really related.
And, and they're both pioneersin what they do. Yeah.
You know, Katrina with the,um, body composting Mm-Hmm.
And Dr. Faith with Vet Hospice,

(44:43):
you know, it's, it'samazing. And course, well,
- It's hard not to continue to fan out.
Fangirl out about Andrew.
- I was just gonna sayAndrew, of course. .
I mean, I mean, have, you know, have
to put the caveat on that,that episode that we,
we completely talk aboutgoing off the rails.

(45:04):
We were completely, we wereso far away from the rails.
We were like going down the hill
and down the, down the road.
Like we were nowhere near
what we were intending ontalking to Andrew about.
But he was just so, he'sjust so entertaining
and just funny.
Just so funny. Well,
- We did catch him in that weird space.
So we ended up talking alot more about social media,

(45:26):
I think, than we normallywould be talking about.
- That's right. He had his first real,
he had his first real hater experience.
That's right. Mm-Hmm. . Yeah.
He was processing Mm-Hmm. .
We were helping him through that.
- Yeah. Well, and it'sprobably a good thing, .
Oh yeah. Yeah. I was making little notes
as I was thinking back about our guests
and what amazing questions

(45:48):
that Sam asked our very firstbrave guest to be on with us.
- Yeah, yeah.- Our
- Lisa Paul- With the death deck,
helping us have those greatconversations in a really
accessible and fun way totry to normalize death.
- Yes. Yeah. I love Lisa. Talk about Yeah.
Another pioneer, likesomebody else who has really

(46:11):
done something out of the ordinary and,
and created that literallya game to Mm-Hmm.
try to getconversations going about,
about death and dying.
I love the death deck. Play it
- All the time.
Yeah. Yeah. I can't wait for the grief
death. That's gonna be amazing.
- Oh yeah. The grief deck.That'll be really great. Yeah.
- And of course, Dr. Matt Tyler,

(46:31):
our palliative doc who'samazing on social networks
and getting the word outthere about palliative care,
getting support earlieron before hospice is,
and I love his video about a banana
and how it compares to hospice.Have you seen that one?
- No, I haven't.
- It's so great. It'slike a banana is a fruit.
So a banana is hospice andlike it's in the fruit realm.

(46:55):
So fruit is palliative.
I not, I'm not doing itjustice, but it's really good.
- Well, he did a video,
he posted a video today on tube feeding.
That was fantastic. It was so good.
He said, oh, I wish I couldremember what he said.
That just really resonated with me.
But it was, you know, basicallytalking about, you know,

(47:15):
when you have to make thathard decision about putting a
tube into somebody andwhy you shouldn't Yeah.
You know, tubes are, tubesare great for people who
aren't faced with a terminal illness,
but when you have a terminalillness, you, you know, you're,
you're not prolonging their life.
You're prolonging their suffering.
- Yeah, for sure. Movingto comfort feeding instead
of force feeding is Yes, yes.

(47:37):
Important to know. Yes.
Especially when we thinkabout food as love, you know?
Mm-Hmm. . Sothen we went to do, uh,
Eileen Hollis, the very sweet funeral
director from New York, as I recall.
- Yes. She was fun.
That was a fun interview. She's adorable.
- She's just, and again, reallygot the behind the scenes of
what it's like to be in a funeral home

(47:58):
and a family, a small family funeral home.
- Yeah. Looks as far from a mortician
as you can possibly imagine.
Just bubbly and cute andso knowledgeable too.
- And JTA being so bravewith her own terminal illness
and giving us the informationfor Canada that she's willing
to come on and share her journey, just

(48:19):
to make sure other people getthe information. Love that.
- Yeah. Yeah, me too.
- Of course, we had to have your BFF on,
- Of course.
My bestie hospice nurse, Julie,talking about her new book,
I'm just like, wishing the best success
for her with her book.
And yeah, I just love Julie.
I've known her since she got on TikTok.

(48:41):
I think I was one of the first people
that she reached out to.
And from day one westarted texting each other
almost every single day.
Voice texting each other constantly.
- Well, I'm glad Ifinally got to meet her.
It's a great connectionyou guys have and yeah.
Great education you guys areputting out in the world.
We need it. Of course, we have Steve,

(49:02):
I miss working with Steve.
He's so great. You'll have to go
to Kenya someday and visit he
- he represented the chaplain,
hospice chaplain roleperfectly. Yeah. Perfectly.
- So. Well, yeah. I mean,he just really, I think,
instilled in people what chaplains

(49:24):
and spiritual counselors do
and what they don't do,more importantly, so
that people aren't freakedout to have someone
with that title come in.
- Yeah, I agree too.
Many people think the, thatthe chaplains have their own
agenda to try to convert youto some religion and Mm-Hmm.
it couldn'tbe further from the truth.
- Of course, Esme, unfortunately,her audio was not, uh,

(49:46):
ideal , but she hadjust such good information
about technical problems.
Records. Yeah.
- Yeah. You gotta have technicalin at least once in every
season, you're gonna have your technical
issues. .
- Well, we were still recovering with
that, uh, with Celeste.
Her audio wasn't the best either,
but yeah, she just, shehas so much experience

(50:08):
and such a huge heart,
and I absolutely, of course, love
what she said about boundaries.
- Yes. Yeah. Me too. Yeah.
She's just been doing hospice for
probably longer than you say, 27 years.
You and I. Yeah. Almost longerthan you and I put together.
Yeah. Not quite, but,but yeah, a long time.
She's just,

(50:29):
and so, you know, really well spoken too.
And I think people don't give
CNAs credit when itcomes to their knowledge.
Mm-Hmm. . Andthey disrespect them a lot.
And, you know, she justreally represents so well
for, for CNAs
- For sure.

(50:50):
And then of course, Dr.
Faith Banks, our hospiceveterinarian. Yeah. How incredible.
Like, the entire time.I'm sure you felt it too.
It was like, oh yeah, that's just like
on her hospice .
- Yes.- So similar.
- Yeah, it really was.It really was. She's
- Lovely.
Love that. I hope that really expands.
I ho I'm hoping in the yearsto come that geriatric care

(51:13):
for pets and hospice care
for pets is much moreexpanded than it is now.
- Yeah, me too.- And then our last guest, which I,
I'm gonna get her nameright, it's not Kate Spade.
It's Katrina Spade ,
- Not Kate Spade.
- She, uh,- She doesn't make handbags.
- She does not. Um,

(51:33):
and she's still alive, sothat's important. , she
- Composts bodies.
- Oh, she was amazing. Sheis another one that's just
so innovative and smart and,you know, girl Boss Energy.
I love it.
- I love that. She callsit body composting. Yeah.
It is what it is. You knowme, I hate euphemisms. Yes.
I can't stand passed away.

(51:54):
Gone to heaven, celestialdischarge, death dying, died dead.
And I love that it's body composting,
because that is what it is.
There's no Mm-Hmm.. No secret there.
- Yeah. Well, as we're comingto the end of season one,
penny, how are you feeling?
- Well, I, I, I wantedto, first of all, I want,
I was thinking aboutthis today too, the fact

(52:15):
that we have 13 episodes in this season.
That was your idea. Mm-Hmm. .
So we're just a morbid crew.
, we gotta,
and sticking with the,um, death and dying theme.
Go for the 13.
- Wore my, my skeleton- Necklace today.
Skeleton necklace, yeah.. Yeah. I feel great.
I think it was a, it wasreally fun, you know,

(52:38):
learning curve on lots of things.
I think, you know, lookingat our first episode
and then going throughand up to the last ones
and going, we did get better at this.
Even the, even the opening,you know, I felt like
as I'm watching the oldvideos, I see that opening.
I'm like, welcome to theDeath Happens podcast,
- .

(52:58):
- I feel a little morecomfortable on camera.
And I think, I think we've,we've kind of, we're,
we're gonna hit our stridefor sure next season.
And I think we're on ourway, uh, in this season
as this season is wrapping up. How about
- You?
I think so. Yeah. Iabsolutely am so glad that we
bumped into each other at the conference
and got to know each other in person.
Yeah. And that my boss begrudgingly

(53:20):
to me told you about my podcast so
that we can actuallyget to know each other.
That, that, uh, worked out wonderfully.
So I'm glad we can come together as, uh,
this transdisciplinaryinformational session.
- Okay. There's something elseI thought about today too,
and only people who are watchingthis on YouTube are gonna,
are gonna know what I'm talking about.
But you do this thingwith your hands ,

(53:42):
that it just cracks me up.
It makes me think of Mr.Burns on, on The Simpsons.
- I do that a lot.- . Excellent. Yes.
Isn't that him? Excellent.
- Yes. I am known fortalking with my hands.
You'd think I am Italian orsomething. Excuse me. .

(54:03):
Well, that's hilarious.
And yes, I'm sure many peoplehave noticed that , uh,
we just wanna make sure thatwe let the listeners know.
We welcome your feedback.We want to hear from you.
So if you have suggestionson people that you want us
to talk to, that there'ssubjects that you want us
to go more in detail with.
I mean, penny has a ton ofinformational videos out there.

(54:26):
I make informational videos about
death and dying and hospice.
But those videos on socialmedia are very short.
And so with this format,we can really get into more
of the nuanced detail
and really talk about the things
that people wanna knowabout and know more about,
or explain things that happened.
Hey, why did this happento my loved one like this?
Or whatever. So let us know. Mm-Hmm.

(54:49):
, you can find us on social
media at Death Happens.
Death Happens Podcast. Tell them all the
social media handles Penny. Oh,
- I have to remember now.
It's .They'll be in the show notes.
I think we had, we couldn'tbe consistent, I think
because Death, death Happens.
Podcast was already used on the
- Email was YouTube.
- I think the email was. Yeah.So, so Death Happens does

(55:12):
- Definitely Death Happensinsiders@gmail.com.
That is our email, right? Yes.
And then you can findThe Death Happens podcast
on all the socials.
Penny was gracious enough toput all that together for us
and do all the amazing thumbnail art.
I love it so much. .
- And it's available in audio
and all of the podcast platforms, right?

(55:36):
- Yes. And if you like it,please share it, please. Mm-Hmm.
, you know, wehave avoided doing this all
season, so now's the time.
Please subscribe or follow the show
or share it with people
that you think could benefit from it.
That's how we're gonnaget this information out.
It's not about us being popular,
it's about getting the information out
to normalize death That'ss, what we do,

(55:56):
- Right?
Yep. And look for us againnext season. That's right.
We're, uh, we're gonna be back again. So
- Season two coming. Season
- Two coming,- .
Until then, remember to live, because
- Someday we'll all be dead.
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