S1/E4 4: The Death of Her

Episode Transcript
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Speaker 1 (00:01):
I'm just a fool, way Fearenschange's welcome to death, grief
and other shit we don't discuss. I'm Kyle McMahon. I

(00:27):
was completely numb. It felt like nothing was real, that
this wasn't really happening. My mom had just been given
her last rites. How is this happening? How is this possible?
It's hard to explain, but it felt like I was
watching a movie of my life rather than living it.

(00:49):
It's almost like I was detached from what was going on,
from what was really happening. Maybe it was my brain's
way of helping me to survive. I'm not sure. I
went to my parents every day, sometimes twice a day,
just to sit with Mom. Most of the time she
was just sleeping. I laid on the bed next to her,

(01:12):
just watching her and trying to muffle the sound of
my crying, waiting for her to wake up. I'd obsessively
look over at her chest, just to make sure that
she was still breathing. Here was my superwoman now fighting
for every moment. She'd wake up, moaning in pain, and

(01:33):
I'd hug her and tell her how much I love her.
She'd tell me how much she loves me. Too and
fall back asleep. She was suffering, and it was killing me.
After an hour or so, I'd have to leave because
it was just too much for me to witness her
in pain. I don't know how Dad was able to,

(01:55):
but I'm so thankful that he is. I'd go back
home to my bubble for a few hours, or go
to the studio and work on my show, and then
i'd go back to my parents and do it all again.
At night, I'd go to Shells and watch a scary
movie with her Nadan. I was simply existing. I was
simply going through movements and motions just to pass time,

(02:20):
just to get through. The anxiety was intense, but the
emotional pain was far worse. Now. It was just a
couple of days after the priest had come and I
had no idea how long we'd have Mom, but I
knew it wouldn't be long. I went to the studio

(02:47):
and did an interview from my show and then went
to my parents. Mom's good friend, Diane, their neighbor, was
there with her. Her and my mom had been friends
for decades, and her husband Wayne had been friends with
my dad for decades. They were the perfect neighbors. I
walked in the room and Mom was talking to her,

(03:08):
and she saw me and told me she loved me,
and then soon after quickly drifted off to sleep. Diane
was crying. I was crying. Mom had just told Diane
to make sure she looked after me and Dad, And
while I was crying, I just had to chuckle still
at the fact that Mom's concern wasn't herself, it was

(03:30):
me and Dad. And of course Diane had assured Mom
that she would always look after us and she didn't
have to worry about that at all. You know, just
like Mom had lived her entire life here at the
end of hers she's more worried about me and Dad
than herself. At some point, Diane had gone back home

(03:58):
and I sat with Mom and she woke up. She
once again told me how much she loved me, and
I told her how much I loved her. She said,
I miss you, and that confused me. Mom, I'm right here,
she said, I missed the way things used to be. Mom,

(04:21):
I missed that too, but you're right here, and I'm
right here right now. I knew exactly what she meant.
She meant she missed our life before pancreatic cancer had
come and destroyed it. She missed the times I'd come
and stay for hours for dinner. Were the times I'd

(04:41):
come and just say hi? Or are the times I'd
run in and be looking for a shirt I had
left at my parents? She missed the times before her
life had turned into a series of anxiety producing medical treatments.
And the truth is, so did I. I missed those
times too. But Mom's heart was still here. Her body

(05:09):
was still here as well, although it was failing her
now more quickly than ever. But her giant heart was
right here in front of me, and I wanted to
hold onto that forever, even though I knew it wouldn't
be fair to her. My brain, though, would take over,

(05:30):
and reality would set back in that it truly wasn't
fair to her. We talked about great memories. We talked
about how much she loves me and how much I
love her. As I laid on the bed next to her,
her body was bone thin and covered up in her blankets,

(05:51):
but she was still here for now. I told her
what an amazing mom she is and has been my
higher life. I told her how I literally couldn't have
picked a better mom if I was able to design
one myself, and I meant every word. Mom couldn't have

(06:13):
been a more perfect mom to me. She's been my rock,
my comfort, my strength. She had supported me through everything,
through thick and thin. She was always there for me,
no questions asked, twenty four seven, day or night. She
always put me first, and I was about to lose that.

(06:38):
I was about to lose her. We talked about how
amazing Dad is, and she told me how lucky she
is to have married him. She said how good of
a man he is, and how good he's been to her.
I agreed with her. She said, I married a good man.

(07:00):
I replied, yes, you did. Mom. I asked her how
they were able to work it all out. They had
all the odds against them, and they made it through
it all successfully. She said, compromise, understanding, and love. But Mom,
you guys have been through so much, things that have
torn most marriages apart. You guys have been through that

(07:23):
and you're still here and you're happy too. She nodded
her head in agreement. We always work everything out. It's
not always easy, but we work it out. She started
getting the bad stomach pains again, which meant she'd soon
start moaning in pain, and I could never handle that,
and I could tell she was exhausted. I love you

(07:47):
so much, Mom. I love you too, Kyle. You were
my whole world and you always have been, she said,
And you've been mine, mom, and you've been mine. With that,

(08:22):
I gave her a big kiss on the head, told
her I'd be back tomorrow after my meeting, and then
I went back home to my bubble to try and
just survive the night. I knew time was getting really,
really short. I knew she wouldn't be here for much longer.

(08:42):
I didn't know if that meant seconds or minutes, or
hours or days, but I knew it wouldn't be long.
And that terrified me, and that saddened me. Even at home,
I was worried that something may happen when I was

(09:03):
away from my parents house. Should I go back there,
Should I spend the night there. I could sleep in
my old room, or I could even sleep on the
floor of my parents room. I didn't know what was
the right thing to do. I didn't know what was
the wrong thing to do. I didn't know what to do.
I texted Dad to see how she was doing throughout

(09:23):
the night, and Dad said she was mostly sleeping. Of course,
then immediately my what if thoughts would start seeping right
back in and I would struggle with going back over
there or not. But ultimately I decided I mentally couldn't
handle hearing or wake up in pain all night. It
just hurt me too much to hear her in such pain,
and I just couldn't do it. And what good would

(09:49):
I be if I'm there crying hysterically the entire time
from hearing mom and pain. It would just make her
more upset. It would just make me more upset. That
would make it harder for Dad. I'm just not strong enough.
Thankfully Dad is. He had texted me later on in

(10:13):
the evening and said, you don't need to come. She's
going to manage through the night and you can come
in the morning after your meetings. Of course, Dad would
never tell me I couldn't come see my mom or
couldn't come to my parents' house. What he was really
saying was it's okay, Kyle, It's okay. He knew what

(10:35):
I was going through internally, and that gave me permission
to take that decision off of my plate altogether. So
now my goal was just to make it through the
night myself so I could wake up and see Mom again.

(10:57):
The next morning, Tuesday, I woke up and got showered
and dressed. Of course, texted Mom good morning, and then
I went to a client meeting. It took everything I
had to just jump into my work and focus on
it so intensely so I could stand and for that

(11:19):
hour or so I was mostly able to get through.
Back when Mom was getting chemo, we watched The Unbreakable
Kimmy Schmidt on Netflix for some much needed laughs. In
one of the episodes, the lead character Kimmy said, quote,
I learned a long time ago that a person can
stand just about anything for ten seconds. Then you just

(11:41):
start on a new ten seconds. All you have to
do is take it ten seconds at a time. End quote.
That had become a mantra for me and Mom throughout
her cancer journey, and I was certainly using it now
in my meeting. When reality started to seep in again,
I'd say in my head, just get through the next
ten seconds, Just get through the next ten seconds. Just

(12:03):
get through the next ten seconds, and then I'd be
able to go back to hyper focusing on the task
in front of me. Hey, we do what we have
to do in order to get through right, even if
it is quoting characters from Netflix comedies. After the meeting
wrapped up, I headed back to my parents' house. Her
longtime friend Patty was there. Patty was a nurse and

(12:26):
was simultaneously comforting Mom while also helping to take care
of her. Mom and I began to talk. She wasn't
speaking as much today, and when she did speak, her
actual speech had seriously declined. Even from yesterday, it was
hard for her to form words now. Patty sat in

(12:49):
the chair next to my parents bed, and I laid
on the bed next to Mom. Mom was able to
ask to hold my hand, so of course I held
her hand, but it had become so thin, so fragile.
These hands that had raised me, sometimes working two jobs

(13:09):
as a single mom early on just to put me
through private school were now simply flesh and bone. I
laid my head on her shoulder, and she mustered the
strength to slowly move her arm to my head, where
she stroked my hair for a few minutes. I love
you so much, Kyle. I love you too, Mom, so

(13:32):
much more than anything. The tears were streaming down my
face and patties. I got up for a moment and
went to my old room and just started crying hysterically
into my pillow. In less than twenty four hours, I
could see the decline. This was it, she would soon

(13:55):
be gone and there's nothing I can do. After a
few minutes, I collected myself and went back in and
laid on the bed again. Mom woke up, and Patty
asked if I wanted time alone with her to say anything.
I held Mom's hand and I was able to proudly say,
We've said everything we've needed to say, and that was

(14:19):
the truth. There was no doubt about our love for
each other. There was no doubt that Mom and I
were the definition of the unbreakable bond between a mother
and her son. Mom was somehow able to work up
a smile to my reply. The rest of the time
I was there, Mom was mostly sleeping. I couldn't stop

(14:41):
the stream of tears coming down my face. I knew,
I knew that this was the end. I knew that
this could very well be the last time I saw
Mom ever again. After a Mom started getting pains again.

(15:04):
Patty had gone out for a moment to let me
say goodbye. I gave Mom a hug with the love
from every single fiber of my being, and I told
her how much I love her. It had been more
than an hour now since Mom had said a word.

(15:24):
It was just too much for her. Took too much
strength to talk, and she was losing strength by the second.
I touched her face with my hand and we looked
each other in the eyes, and she smiled, and out
of nowhere, I started singing the song that she had
sung to me since I was a baby, all throughout

(15:44):
my life, and somehow Mom was able to come up
with the strength to sing along with me. You are
miss Unshy, my only son Shy. You make me happy

(16:10):
when skies are great. You'll never know, dear how much fellow,
Please don't take my son Shine away. Does hospice always

(16:43):
mean death? What is the difference between hospice and pallity
of care? And how our healthcare workers and either of
these specialties able to do this day in and day out.
I couldn't imagine being able to go into someone's home
and take care of them for months or weeks knowing
that they may soon pass. It just seems so overwhelming,

(17:05):
so sad, heartbreaking, depressing, I spoke with doctor John Goodill,
chief of Christiana Care's hospice and Palliative care, to discuss
hospice and palliative care and what it does for patients
and their loved ones. Doctor Goodill started the pain management
and palliative care program at Christiana Care in two thousand

(17:27):
and four and now participates on an interdisciplinary team that
provides consultations for hospital patients who are in the advanced
stages of diseases such as cancer, renal failure, heart failure,
and dementia. He was willing to sit down with me
and discuss at all, no holds barred, So to start with,
what is palliative care? Doctor Goodill explains, So, palliative is

(17:54):
a word that comes from the Latin pallieri, which means
to shield, and it really is a specialty that started
back in the mid nineties after a large study done
in five big flagship institutions around this country looked at

(18:15):
the experience of patients trying to live with serious illness
in the hospital in these institutions and ask how well
we addressed their symptoms, how well we knew what their
wishes were, how well we knew them really as people.
It was a pretty negative study in terms of we

(18:37):
were treating diseases and not people. We weren't paying attention
to their experience trying to live with serious illness, and
we needed to get back to focus more on that.
So healight of care is really focused on helping people
live their life well with serious illness, maximize their quality

(18:58):
of life, address their symptoms, try to meet other needs
they might have as they try to live their life
with serious illness. And it's a service or a care
that's given right along with regular medical treatment of their illness,
and it's interdisciplinary and some of it is focused on

(19:20):
people near the end of their life. Actually, hospice care
is a subset of paliitive care. Paliative care is a
bigger umbrella involving people further upstream when they're living with
serious illness, but hospices focus more on closer to the
end of life, helping people kind of live that final

(19:41):
phase of their life as well as they can until
they die. But there is some acceptance that we all die.
You know, Medicine before that had looked at death as
a adversary is something that when it happens, we've failed.
But it's really not that we've kind of tried to
recalibrate in order to provide benefit to patients and families.

(20:04):
So hospice is actually a subset of palliative care. Exactly
does hospice necessarily mean death? Well, the way hospice has
grown up in the in the US is as a
Medicare reimbursement benefit, and there are criteria for that benefit

(20:26):
to be had, and the major criteria is a prognosis
of six months or less. So there are people that
get on hospice and live longer. In fact, there are
studies that show that people who are trying to live
their life with serious illness and it's advanced and progressive,

(20:46):
they actually live longer on with hospice support than similar
people who don't have hospice support. But the general public
has kind of gotten this picture of hospice as when
you sign up for you're near the end of your
life and you're dying, so they put it off longer
than they should, and when they finally do sign up

(21:07):
for it, they are very near the end of their life,
and so it's sort of a self fulfilling proposite. So
palliative is more in a broader sense, is a general
care taking of somebody who has an illness may or
may not be terminal. Yes, yes, it has a serious illness,
and people can recover from serious illness. A good example

(21:30):
of that is a severe injury from a car accident.
People can be very sick and near death and actually
recover from that, often if they're young, but they may
They and their family may need a lot of support
during that time of treatment and recovery. But also a
lot of people have serious, progressive, non curative illness that

(21:55):
may be treatable, but it will progress over time. That's
the natural history of it, and palliative can be helpful
to people and families. The unit of care and palliative
care is the patient and their caregivers or their family,
and they can be helpful in helping them live the
best life they can with hospice. I know when we

(22:17):
started talking about hospice with my mom, immediate anxiety for me.
As soon as somebody said hospice, I'm like, what, shut up,
I need to like go sit down. With palliative care.
I was a little bit more confused because I wasn't
I had to like google it because I wasn't sure
from what I'm hearing from you. You don't need to

(22:39):
have instant anxiety when you hear palliative care. Now, there's
actually a study done probably two years ago now, a
survey of the general public of what did they understand
about advanced directives, palliative care, and hospice, And what they
found was that everybody knew what advanced directives were, but
very few people build them out and did them. People

(23:02):
really didn't know what palliative care was, but when you
told them what it was, they all wanted it because
it's a good thing. Hospice everyone knew what that was,
and nobody wanted it because they associated with dying. It's
really interesting and that kind of lines up with exactly
how I was feeling. Yeah, and then ironically, Delaware Hospice

(23:24):
does palliative care, which I didn't realize. So when they
were talking about bringing Delaware Hospice in for my mom,
they were only talking about when she got out of
the hospital, to get her strong enough to go back
to treatment. When I heard they're bringing hospice in, I'm like, what, Like,
what are you talking about? And I'm like, having you know,

(23:46):
a alpotation, yeah, crisis, And then I'm looking through the
paperwork and well, yes it's called Delaware Hospice, but the
palliative care team was the one that was kind of
in charge of the direct tips for the team that
comes out to my mom to get you know what
I mean. There was a lot of confusion on my end.
Palliative care is really just good medical care. But when

(24:10):
someone is trying to live their life with serious illness,
they don't just need the physical treatment of their disease.
They need psychological support, they need emotional support, they need
some practical stuff to support them, they need spiritual support,
and so palliative and hospice have the same holistic approach

(24:32):
to that, but in palliative you can get disease specific
treatment at the same time you're getting that holistic support. Unfortunately,
the way we've developed hospice in this country, once you
get hospice the benefit that Medicare hospice benefit, you have
to stop a lot of disease specific treatment because it's

(24:53):
it's too expensive, the hospices can't afford to provide it,
and they really provide a package deal once a person
and signs up for auspice, So there is a transition
period that is difficult in that way. They have to
let go of stuff. Usually it's stuff that's not helping
anymore and it's time to let go of it. But
it feels like they have to change treatment teams, so

(25:17):
it feels like abandonment. Sometimes they have to let go
of treatment that they're used to, and that feels like
maybe I shouldn't be letting go of this because I've
been doing it for so long and I should continue.
I mean, one perfect example is hemodialysis patients who are
on hemodialysis but are dying of cancer. In order to
get hospice services, they have to have a sort of

(25:40):
a target day to stop their hemodialysis, and that really
means that they're going to die within several weeks, and
it's a hard transition, and again most people don't want
to do that until they really have to. And in
order to get the benefit of that kind of treatment,
that holistic care, palliative care is kind of all and

(26:00):
the hospices recognize that they're trying to reach more people
for their upstream and so they develop a palliative care
program on top of what they're doing in hospice. What
is a typical day like for you. I mean, I'm
sure there is no typical, but what you know, what
is generally a day for you. So most palliative care

(26:20):
programs started in the hospital and then we call them
hospital based and that's how I started the program at
Christianic Care and so I still work on the impatient
consult service for palliative care. So I'm a palliative care specialist,
and I see very sick people in the hospital, some

(26:41):
of who are near the end of their life. Others
who have a chance to get treatment and have that
treatment be successful and go on with their life. But
you know, I'll see a lot of people who are
near the end of their life and I have to
help them come to some understanding of that, if possible,
some acceptance of that, and the people that love them

(27:03):
and care for them all of that. That's a very
stressful situation when you're finding out finding out for the
first time that you've got metastatic cancer that's going to
probably take your life, and finding out when that might
be and what your life looks like for the rest
of the time and how much maybe time that is.
It's a pretty stressful thing and at the same time

(27:25):
undergo being sick and looking at undergoing treatments that can
be pretty burdensome also, so we have an inter disciplinary
team that has social workers and a chaplain and advanced
practice clinicians like nurse practitioners and physicians. We also have

(27:46):
an outpatient team based at the Cancer Centate, and we
have a community based team that sees patients with our
Advanced Heart Failure team in their clinic with our Transition clinic,
which is younger people living with lifelong serious illnesses that
are difficult to live with like muscular distrophe, cistic fibrosis.

(28:08):
And they also make home business for people who are
it's very difficult for them to even get out of
their house because of how sick they are. So we've
developed those those branches over time and we now have
a pretty full spectrum availability of palliative care in this community.
That is I think very valuable to patients and families. Yeah,

(28:31):
I mean it sounds like it is a attacks it
from every angle, if you will. Yeah, for you, what
have you seen in regards to the way this is trended.
I didn't realize that this was as a relatively new
discipline in medicine, you know, I thought I had just
never heard of it until my mom got diagnosed with cancer.

(28:53):
Are you seeing this grow more throughout the world, throughout
the country, Like, what are you seeing trend wise with
palliative care. Well, the US has been a leader in it,
and it is more prevalent in the US than in
a lot of other countries, although Europe is pretty good too,
but the developing countries are somewhat behind, just because of

(29:16):
the resources that it takes. I think the adoption of
it is not unlike the adoption of any other innovation.
You know, if you look at the adoption curve for smartphones,
you know, there was a time in the seventies when
nobody had a smartphone. Now everybody has a smartphone. The
shape of that curve is something like an S curve,

(29:38):
and you reach a tipping point where enough people have
them that then everybody needs that, and so palid of
care is sort of at that tipping point. It is
available in most hospitals with over three hundred beds, and
it's certainly available in all cutting edge hospitals, teaching hospitals,

(30:00):
even hospices now have palliative care programs that they have
developed and utilized to reach patients before they're ready to
go on hospice. So's it's pretty available. I mean, it's
more available in the northeast, midwest, west coast than it
is in the south, but still it's pretty available. And

(30:20):
is this is it something that you have to request
or is it something that just happens that's variable? And
I think part of the work of adopting it has
been to educate our colleagues about its value for their patients.
And so that's still an ongoing process and some people,

(30:43):
some providers, healthcare providers are much more attuned to the
value of it than others. I think if patients and
families aren't getting in and they think they should, they
should definitely ask. Okay, so if I'm a person that's
been diagnosed with something that would be helped by palliative care,

(31:05):
what exactly can I expect when I start that process? Yeah,
I mean, I think the thing I would emphasize again
is that it's not just end of life care. And
so if you have a serious illness and you're stressed
or challenged by things that come up with that illness,

(31:25):
whether it be symptoms or difficulty, you know, psychological and
emotional distress, or your families having difficulty, you can expect
that those things can be addressed and improved upon so
that your quality of life is better. And they also
will help with this whole process of advanced care planning

(31:49):
about thinking about the future and who you might want
to speak for you if you get so sick you
can't speak for yourself, and what medical treatments you might
want to go through or not. That's something that again
more of us need to do and revisit actually as
time goes on, because people change their minds, so it

(32:12):
has to be a flexible process, but you need often
support and guidance to go through it, and a palliative
care provider or team can help with that. When somebody
gets a diagnosis that is difficult, whether it's a long
term thing or a terminal thing or whatever, what have

(32:35):
you found is the best? And I hate to use
absolute terms like that. What are some healthy ways to
deal with that news? Do you take? Do you create
a list and take action from there of steps you
need to take? Do you take time to decompres like
what is between everybody's a little different, but people need

(32:57):
support when they get that kind of news because it's scared,
it's overwhelming. It's emotionally draining. You talked with doctor Masters
about delivering bad news. There's a good way to do that,
in a bad way to do that, And when providers
do it in a bad way, it makes it ten
times worse. Because if you're in the hospital and you're

(33:17):
sick and you're very vulnerable and then doctor walks in
and says you got three months to live and then
walks out, that's pretty detrimental to me. That's almost malpractice.
So there is a way to set up the situations
so that people are supported with their loved ones, and
you give them information in ways that they can understand it,

(33:42):
and you wait and you respond to their emotional reaction
to that, and you help them think about what the
next step will be. Those are the things that can
help people come to grips with it. But it still
is overwhelming. I mean, if someone told me I have
three months to live, Wow, that would pretty much upturn

(34:03):
my life, right anyone's life. But I usually encourage people
to take one step at a time and that sometimes
things turn out better than they look at first glance,
and then I continue to offer support and a plan
going forward to deal with it. So do you think

(34:23):
that a plan, no matter what good news is, a
plan is, would you agree is probably the most important
first step. I think all the steps are important. Listening
to patients about what's important to them, responding to their
their emotional reaction, making sure that they've gathered the important

(34:47):
people around them that can offer support, because you know, again,
if you're just meeting this person in that kind of
a situation, you don't have a relationship to fall back on.
They don't you don't know you that well. You want
to do things that help build confidence and trust in

(35:07):
a relationship that you can then move forward together with
and deal with the situation. And how about on the
other side, as so, I'm getting this news, what is
important for me to do next? After receiving this news,
I think sort of just sit with it and and
you know, writing things down can be helpful, talking to

(35:30):
the people that are important in your life can be helpful.
No one should have to go through this kind of
a thing alone, and unfortunately a lot of people do.
But it can be overwhelming. I mean, none of us
live forever, and we all are going to face the
end of our life at some point. But having helped
to do that I think can make it a little
easier when we come back. Doctor Goodwill discusses how personal

(35:56):
choices play a role in palliots of care and when
you pass from cancer, what exactly is it that kills you?
We dive further into these uncomfortable questions when we return.
It's no secret that palliative care drastically improves the quality

(36:20):
of life for patients, their loved ones, and their caregivers.
Yet worldwide, only fourteen percent of people who would benefit
from palliative care receive it. Seventy eight percent of the
estimated forty million people a year who need palliative care
live in low and middle income countries. According to the

(36:40):
World Health Organization, one of the biggest barriers to palliative
care is simply educating policymakers, healthcare professionals, and the general
public about what palliative care is. As I spoke with
doctor Goodill, I realize that even though Mom used palliative care,
I still had so many questions about it, and that

(37:00):
was mostly due to me not exactly being emotionally able
to just jump right into the situation, particularly since Dad
was handling it with Mom. Thankfully, doctor Goodill was willing
to have these conversations with me, and these are conversations
that most people, myself included before this, just don't want
to have. Like how big of a role does the

(37:23):
patient have in their own choices regarding palliative care. Doctor
Goodill shed some light. There's always choices, Okay. One way
to conceptualize this is to think of those five stages
of death at Googler Ross talked about, because they also
are sort of five stages of grief, and we're talking

(37:45):
here about anticipatory grief a lot, but there's a lot
of denial in the front end of it. There's anger,
there's bargaining that goes on, there's depression, all that you know,
before there's some acceptance and they don't always happen the
same way for everyone, and they don't go in order necessarily,

(38:05):
but all of those reactions are possible, and you know,
recognizing what's going on and supporting someone through that and
bringing the resources to bear that will be helpful. I mean,
somebody is particularly religious or spiritual than a chaplain may
be the key person on the team to spend time
with that person and help them sort it out. They're

(38:26):
sitting there, you know, in their hospital room thinking why
is God doing this to me or something like this
that I'm not probably the best person to answer that.
So that's where the interdisciplinary team can be very helpful.
Who is kind of your point person in a palliative
care environment because it seems like there's a lot going on.

(38:49):
You know, you have your medical oncologist, your physician, you're
the psychologist, Like, who is kind of the point person
that is like, Okay, this is a spiritual person we
need to bring in at or whatever. Yeah. So the
way our console service works is we're very busy. People
who are in the hospital these days are sicker than

(39:09):
people who used to be in the hospital back when
I started my career, and so time moves pretty quickly.
In the hospital. Things happen quickly, so you really have
to get a handle on it quickly. And one of
the things that we do in the hospital setting is
we do a lot of coordination of care. So there

(39:30):
might be four or five specialists involved in a particular case,
and we spend a lot of time making sure that
the right person is doing the right thing at the
right time, and that we need a specialist input at
a certain time or in a conversation with a patient
family that we got it, and that takes time and

(39:51):
effort to do. But usually the way we do it
is when a new console comes in, either one of
our physicians or one of our nurse practitioners or PA's
will do the initial consult and that is part of
that as an assessment about what other needs there are.
So we have less social workers and chaplains on our team,
so we use them sparingly and when they're really needed

(40:15):
in a case, then that the initial point person will
will make that clear and they'll be added to the
list for the social worker or the chaplain. You know,
you mentioned that palliative care is kind of at that
tipping point. Is this something that we can expect in
ten years? Is just going to be an accepted and

(40:35):
expected part of practice everywhere south north around the world. Yes,
that's the short answer. Okay, yeah, I mean in the
state of Delaware. I you know, I started the first
palliative care program here at Christianic Care and we've had
it going for like eighteen years. But Delaware has a
pretty good rating in terms of availability of palliative care

(40:58):
and a lot of the hospice is that work in
the Delawares area have palliative care programs attached to them.
As we talked about, Wow, so it's pretty available and
people should certainly ask for it and expect to be
able to get it when they need it. This is
kind of theorizing, but it almost seems like it's the
future of medicine in general that you would want a

(41:23):
multi disciplinary team for your regular health, you know what
I mean. Yeah, paliative care is really about good medical care,
and we've gotten back to it to embracing that aspect
of it that we had forgotten about for a while
back in the eighties and early nineties. We were so

(41:46):
involved with diagnosis and treatment we forgot about the person
when we're treating. For you, what is the most important
takeaway that someone should know when they get a diagnosed
that is not what they were expecting. So if you
could tell every patient in the world or future patient

(42:07):
it was listening to this right now, what would you
say to them? I guess I would say that there
is a way to live your life with serious illness
in the best way, and pif care cannot help you
do that. I mean, we can't cure a lot of
diseases and people have to live with serious illness sometimes,

(42:27):
but ollitif care can help them do that, And none
of us are going to live forever, and it's often
better to think about where things are going, and as
scary as that might be, prepare as best you can
because that makes it better in the end. What happens

(42:48):
when we physically die. Yeah, you know, when Hyron asked
me about this, I had to smile because I had
just listened to a podcasts from the American College of Physicians,
a podcast called Bedside Rounds. The episode was called Last Breath,

(43:08):
and it was all about how we have diagnosed death
over these centuries. And you know, before we had stethoscopes,
how did you know somebody was dead? And there was
some really bizarre stuff that used to happen. I mean,
people used to cut up bodies to make sure they
were dead, which is kind of weird. But you know,

(43:30):
once we once we had the stethoscope, the basic diagnosis
of the death included no pulse, no heart tones, no
breath tones, person's unresponsive, and then they're pretty much dead.
But there are phenomena that have been recognized over over
the years, especially as since we've had CPR and resuscitation.

(43:54):
You know, when you when you do a resuscitation on person,
you do CPR to augment their blood flow when their
heart's not working, and you inject their body with a
lot of drugs to try and stimulate their heart back
to working again. But that those drugs don't get circulated around,
they may not get to the heart right away, and

(44:17):
so they may do a resuscitation and get no immediate
initial response, stop the resuscitation, and ten minutes later the
body all of a sudden wakes up and starts working again,
and it's a phenomena called auto resuscitation. Happens again in

(44:37):
the situation of a resuscitation, not a natural death. So
in that situation you probably ought to weight a little
bit before you actually declare someone dead, whereas a person
with a natural death, the time that you need to
wait is probably shorter. I'll be on the order of
two or five minutes. And that's what's used when we

(45:00):
do organ procurement from people who have died. We don't
want to take organs from somebody who's alive, so we
really are pretty careful about making sure that we can
declare them dead before we take their organs and that
timeframe for a natural death is about five minutes. So
the organs, even though the body has died, are still

(45:22):
usable for a period after Yeah, they're recoverable. I mean,
that's that's what the whole thing about organ donation is.
Those organs can be taken out of a dead body
and given to put in a live body and they
actually work. And how long is that? Well, they degrade
over time, so the time you know, again you don't

(45:44):
want to wait too long, but you want to make
sure the person's dead. So I think that the timeframe
they used for organ donation after cardiac death is about
five minutes. Okay, So I am, you know a body,
and I have cancer or whatever. What is it that

(46:08):
actually kills me? Explain that if you. I mean, obviously,
depending on what is killing your your death will look
a little different. So if somebody dies of a sudden
cardiac arrest, their heart's going to stop. They'll stop profusing
their other organs and those will eventually shut down. Somebody

(46:29):
who's dying of cancer, it's usually a more slow, prolonged
process of slowly whatever wherever the cancer goes in their body,
it's gonna cause malfunction. So they may get metastasies to
their brain, and their brain will start to malfunction. Brain

(46:50):
controls a lot of things in the body, and it
can cause malfunction in other other areas of the body.
A person may get an infection and on top of
their cancer, and then all of a sudden, their blood
pressure will drop. Their body will have an inadequate response
to the infection. Once their blood pressure drops, they'll they'll

(47:14):
have inadequate profusion of their kidneys and their and their
brain and their and the rest of their body, and
they'll eventually die. Or if they don't get an infection,
they may slowly become weaker, they will be less functional.
They often become bedbound. They often will sleep more, eat less,

(47:40):
and eventually, you know, their heart will stop and they'll
and they'll die. Is there a process or I should say,
what is the process? Like what happens you know, when
they whisk away the body, whether it's at the hospital
or at you know, to a funeral home or whatever.
What happens to the body is it is the brain

(48:05):
price unreally stupid? What are what's going on? So I
don't usually accompany the body after it's dead wherever it
goes I mean in the hospital, it normally goes to
the basement, to the morgue, and then the funeral home
comes and picks it up and they prepare it, so
to speak. But immediately after a person dies, all of

(48:26):
the tissues begin to break down through this process almost immediately,
almost immediately through this process called autolysis, and that's where
cell man brains dissolve, enzymes get released, and just accelerate
that process. Several minutes to maybe half an hour, the

(48:47):
body develops this thing called rigor mortis, which is stiffening
of the muscles and the joints, and so you know,
the body is really you can't really move it around
very easily, whereas immediately after death it's pretty reliable. And
then you know that stays in place for usually until

(49:09):
the funeral home gets it and then they deal with
it in some way. I don't really I'm not that
familiar with how they embalm a body, but I don't
know where the soul goes right right how long? Like
I've heard that there is brain activity or something that
can happen afterwards, but some some I guess, there's other

(49:32):
schools of thought that say it's like more gases or
something like being. Is there a consensus on this. Does
the brain just cease afterwards immediately or you know, I
that's a good question. I'm not sure. I'm I'm really
an expert on that either. I do know that there
can be some reflex even breaths taken immediately after death

(49:57):
for a period of time, But I don't think there
is consciousness. You know, these maybe sort of last gasp
of function of particular cells in the body as they
go through the dying process. But I don't think a
person is conscious in any way, shape or form for

(50:21):
this entire the entire process of you know, palliative care
and end of life decisions and that sort of thing.
What is the one thing that you think is most
important for somebody that is facing end of life to know?

(50:43):
There are two sort of facts that I deal with
on a daily basis. One is that most people don't
want to go before they have to. And the second
thing is there's a lot of uncertainty about when that
is for any individual person. So the trick is you
don't want to hang on too long, but you don't
want to let go too soon. Yeah, And that's that's

(51:05):
the effect of life. Really. Yeah, yeah, and that's I
would love for you to have an answer, but I
think nobody has an answer for that. It's all individual,
I guess no. I mean, I am an afficionado of
Stoic philosophy, and the Stoics felt that that was an
important thing, is to not not hang on too long,

(51:26):
to live your life as fully as you as you can,
and uh, and not hang on too long. Well. And
it's interesting because that's kind of that homeostasis, you know,
that exactly that we're trying to find throughout our entire
lives yang right, which could and should really apply to
our deaths as well. Palliative care and hospice are too

(51:51):
related but separate functions that both aim to ultimately improve
the quality of life of patience battling serious illness. Due
to palliative care, Mom was able to be in my
parents home in her final weeks, where she was able
to pass in the bed she shared with Dad for
nearly forty years, and that was one of her three
wishes before she passed. Number one, she wanted to make

(52:14):
sure that Dad and myself and her loved ones would
be okay. Number two, she wanted to pass at home
and number three, she wanted to be in her own bed.
She didn't want to be in a hospital bed, and
thanks to the incredible palliative care team that she had,
Mom got two of those wishes granted right there. While

(52:50):
we know the value and importance of hospice and increasingly
palliative care, there's a whole another aspect of death care
that has been around for centuries, but in the last
ten years or so is becoming increasingly visible. It's called
a death dula, and there's all types of different names
for it. It might be referred to as a sole midwife,

(53:12):
or a death midwife, a transition guide, or even an
end of life coach. Essentially, a death dula's goal is
to have their patients have a good death. Karen Karnatz
has been a funeral professional for over twenty five years.
In the last few years, she's branched out and become

(53:33):
an end of life dula. So what exactly is an
end of life dula? Karen explains, So, if you are
going to hire an end of life dula, what you
would be hiring is a non medical professional that is
a support and a caregiver to either the dying and

(53:56):
or their families as they navigate that end of life transition.
So it is somebody, if I'm understanding correctly, it's somebody
on the non medical side who was there to support
in whatever that person needs on the death side rather
than the birth side. Is that well sure? And so

(54:17):
the easiest way for us to talk about end of
life dulas is to correlate it to birth dula's just
because people are so even though those aren't I'm learning
now there are still people who don't understand what that is.
It's an easy way for us to discuss it. So,
just like adula is someone you go to support your
birthing experience that you have with a medical professional, So

(54:38):
either a midwife or a doctor, you would get that
DULA to help support the mom as she is navigating
that transition and then the partner allowing them to be
involved in that birth space without having to be the
person who's managing the situation. So the dula's kind of
the manager for you and the voice to express what

(55:01):
your needs and wishes are that you had already worked
to put together right, so they hope gather information for
what your ultimate experience might be, and then they try
to help you have that experience and being an educational
peace bringing that educational piece to the process. So an
end of life dula work similar where they understand the process.

(55:21):
They understand the varying feelings that are happening in one
moment for all the different parties involved, and they're helping
you to navigate and to feel free to express those
feelings too. We don't always in this culture feel safe
to express whatever it is that we're going through because

(55:43):
we're going to be judged or because we are judged
various reasons. So an end of life dula is trained
to just listen. Sometimes sometimes it's as easy as that,
just and to say easy listening is not easy. It's simple,
it's simple, not easy, allowing someone just to express wherever
they are at. So this seems to be kind of

(56:05):
like a multidisciplinary thing in regards to seems you kind
of have to be organized, you have to have compassion
and empathy understanding. I'm sure patients. Is there a program
or something that makes somebody a death dula or you know,
how does that happen? That's a great question. So death

(56:27):
dula's the name is new, but it's something that we've
been doing for each other forever, for as old as time,
there has been someone in your community or in your
culture that you look to for these big life events,
and they don't have to have a title. That could
just be the grandma that you know is the one
that is the one that you can look to and

(56:48):
just naturally steps into that place. So I find that
these are people that have a natural gift and talent
to serve others, but also, for whatever read then don't
have the same anxieties around death at other people might have,
so they're able to bring their life experience and their

(57:08):
heart and their soul and their talents to assisting others
in moments where they really need the support of their community.
So a title is a title, right, and that's It's
great that there are organizations out there where you can
get certifications, so that would be what I did. I
attended the University of Vermont to get my professional end

(57:31):
of Life do a certificate. But this is actually not
federally regulated, so you could call yourself one and not
be when and maybe even be you know, more qualified
than someone who took the course. Right, So it really
the people who have the heart for it, the people
who are care in this way, they seem to now
be drawn to it. And what's interesting for me, as

(57:53):
someone who is primarily a funeral director, I'm seeing people
who maybe once we're now samigating to funeral homes to
start helping in that capacity, see this other thing that's
available to them, and it is drawing those people also,
So we're kind of we're seeing people choose because it
is difficult to do both. And what's interesting is, like

(58:16):
you said, it could be you know, the auntie down
the street that's everybody's favorite auntie, that is just that
compassionate person that everybody's grandma, you know what I mean,
that person on the block or whatever, that everybody you know,
you know, which is pretty special and comforting to know
that the title, as you said, as a title, and

(58:38):
it doesn't necessarily you don't have to necessarily go in
search for death dula if you already have somebody like
that in your life that you might already feel close
to m And I will say, and at least in
my experience in my class, I think I was surprised
that more people weren't trying to make it a career.

(58:58):
It was really a lot of people who had had
a death experience, or maybe we're volunteers for hospice and
they really wanted to get more skills so they could
provide this service just as a community member, just or
just for their family, or just know more about it.
So the people that are going to get these certifications

(59:19):
sometimes they're just people who just want to know more
and be just get a little more education, a little
more structure around what they're learning. But ultimately, you know,
marry that with what they're already just know how to
do intrinsically. And how were you drawn to this industry

(59:39):
in general? You know, obviously you're you are primarily involved
with funeral homes, but how did you get here? Rather
than I want to be a you know, dentist or something.
So that's funny. I hate it. I'm so mean to
my dentist, Like people always say that to me, like
you know, I could never you do, And I'm like,
I could never be a dentist or a dental pygenist.

(01:00:00):
So God bless dentists, thank you. No for me, I
really liked science, and so I came to be in
my I came to this career just picking anatomy in
high school and from there I went directly from high
school to mortuary college, which we have to. All states
are different, but in California, if you're going to be
an embalmer or you have to go to mortuary college.
So I did that right out after high school, got

(01:00:22):
a job with a funeral home, apprenticing as an embalmer,
learning how to be a funeral director, and I've just
like kept going and also learning. So different people do
different things. I can just say for me personally, I
became an embalmber, a funeral director. I learned how to
operate crematories. I learned how to manage cemeteries. I just

(01:00:44):
want I want to learn all of it because I
want to be able to say that I know how
everything works and give that knowledge back to the people
that I am grateful to serve. So for me, it
was important to just learn as much as I can
about everything. It just so happens. The thing that I
am most naturally gifted is being an efficient actually and

(01:01:07):
being a celebrate what we call and that marries very
well with the End of Life FULA program because or
end of Life DULA services. Not all dula's specializing legacy work,
so having people's lives recorded in some fashion, whether it's
just helping them write their own obituary, or helping them
do scrap booking for their families, Helping then them tell stories,

(01:01:29):
maybe put it on a place like story Corps, or
just gather those stories so later on they can officiate
a funeral or act as a celebrate. And then twenty
twenty eight, right, So then everyone's left sitting around going
what do I Life is precious And you'd think i'd
know already, right, but you know even more so, it
just came this pressure cooker, and I knew that I

(01:01:51):
wanted to do more around grief in particular, so I
chose to take two certificate courses, one as a Grief
Support Specialists and the other as an end of life DULA.
And I'm using all of those to continue to serve
families as much as I can and give them as
much education as I can from where I sit right now,

(01:02:13):
which is typically after death. Well, and it seems like
each one of those can and is its own profession. Also,
they each make you stronger in the others, yes, I
think so. Yeah. And some people are very they are
naturally drawn to one thing and they're good at that

(01:02:35):
one thing, and some things are more science based, and
some things are more emotional based, and some things are administrative.
And it's good to know all of those things. But
it's also good to know what you're good at. Right,
So if your specialty is doing this one thing, do
it and be the best at it, and I will
be so grateful for you to supplement where I'm not
so good. Right. But the world of end of life

(01:02:56):
dulas and by the way, they can be called different things,
so they might call themselves death midwives, they might call
themselves death coaches or end of life consultants. There's a
lot of terms because it's not federally regulated. There's no
set system, there's no set group of services that one's

(01:03:16):
going to provide. So as you're looking for a death doula,
you should interview them to see what it is they're doing,
because you may not know what you want until you
hear it. And so you look to see who's available
and see what they specialize in and go with the
one that feels like it will most fit your needs.
But you know, some are really good at that legacy works,
so that's what they do. Some are very practical, so

(01:03:38):
they want to do they want to just do things
for you, like clean up your house, right, you don't
if you're with your mom, you don't need to clean
the bathroom. We'll clean your bathroom. You'll be with your mom.
Or you've been sitting with your mom for hours, you
need a minute, you need to go get Starbucks or something,
so we'll just sit with you. We'll sit with your
mom so you can have that time to go and

(01:03:59):
they feel cometable and natural just stepping in that role
to be a support for you. What do you feel
on the death duel A side is the role as
the person or family starts to prepare for their the
end of their life. Does it change? Does that the
role of a death duela or end of life duela

(01:04:21):
change at all? Or is it still just under the
banner of one hundred percent serving that person. No? No,
So that's why I say you should really look to
see what the duela is providing so you're getting what
it is that you need from them. So some may
just say, we just want to support the people surrounding

(01:04:42):
the dying, so we can be a little bit of
an advocate for them so they know what to expect
from the hospital or the hospice or from the funeral home.
You know, empower them to get some knowledge around that,
but also give them tools to decrease some anxiety, some stress.
It's a stressful situation. It's an anxious situation. So anything
you can, any little bits you can take away to

(01:05:04):
decrease that as much as possible. So it could be
as easy as one of my favorite things. It's so simple,
but you don't think to do it. When someone is dying.
Everyone tends to want to help. Everyone wants to do something,
and sometimes the help is well meaning, but it's intrusive.
So that person can help the family come up with
a list of things that they would want people to

(01:05:26):
do for them. Right, And so when someone calls and
says what can I do, you can say I want
door dash fully on Thursday, and then they're grateful to
have something to do, and it's something that you need
is feeling a need. Right, So just like these little
practical things that make the experience Otherwise, you know, people
could be giving things that you don't want, or you're

(01:05:48):
worried about having to answer what people want, and the
do look can do that for you too. So the
do look can take on all those phone calls or
take on those requests and then give the feedback of
what the family needs so you don't have to do that. Also,
like make visitor lists too, and communicate with the people
who are visitors what the parameters of the visit might be. Right,
So the person wants to be touched, the person doesn't

(01:06:10):
want to be touched. The person wants to hear stories.
The person does not want to be asked about what's
going on with them. You know, the person just wants
to hear from you. Just make the visit what the
person would want, and then educate the people who are
coming on how to have the best experience with that
person as their transition. And it's like an advocate. I mean,

(01:06:30):
it's your advocate totally, just like a birthdula would be
your advocate because they know what your plan is best
like plans, right, so they're going to do their best
to follow it. But yes, and they know the systems
well enough to know maybe what questions to ask that
you don't know to ask, or what to ask for,
when to give people space, when to get answers. Where

(01:06:54):
did this come from? Is this uh something that's been
around you know, thousands of years. I mean, I know
you touched on it a little, but is this like
steeped in tradition dating back to the Egyptians. I'm totally
making this up, but yeah, no, that's a great question
because I do think that within cultures there are people

(01:07:16):
that kind of have this role naturally assigned to them,
and we are melting pot of cultures and a lot
of us that has served to make us what we
might call like spiritual but not religious, or just lost
touch with whatever our you know, the culture we came from,
our ancestors were, and so I think this is kind

(01:07:36):
of a call back to what is our role in
the community to care for one another. And I think
enough people were interested in it, enough people wanted to
serve in that way, and I think it became something
that deserves some structure around and so people came in
to fill that gap. And so some duels are educational duel.

(01:08:00):
I mean their job is to have training for dula's
in training right. Going with Grace is a great example.
Alua Arthur is huge in the end of life DULA
community and such a great advocate for having a death
experience that you can be kind of proud of and
you can be proud of being a part of and

(01:08:21):
just training so many people on how to navigate such
hard topics and bring the conversation to awareness. Social media
is also doing that too, right, So people the kids
like me who are just getting into mortuary college, or
you know, those kids who are not afraid of death
and who are looking into it more just to learn
more about it. Before we just had each other and

(01:08:43):
now we've got the Internet, and so like if you're
my Instagram feed, it's all like grief and funeral home
professionals and even like parents documenting their anticipatory grief for
a child that's maybe not well for various reasons, or
people navigating their own grief journeys in stories and reels.

(01:09:06):
So for me, death is really everywhere and it is anyway,
but our life is our ig feed, Like that's one's
out there. But I know enough to know that's not everybody's.
In fact, like some people don't don't have an idea
one about what it is, and so social media has
been a way that people have. The voice is getting louder,

(01:09:27):
the voice that says we need to start thinking differently
about death, We need to start being empowered around it
instead of giving up our power to other people, and
then we are anxious because we don't know what's going on. Right.
So the more that people are willing to talk and
share their stories and be honest and vulnerable about their grief,

(01:09:48):
you know what you're doing, like, you're taking your platform.
You have this experience, you see what it meant to
you to go through, and you're honoring your mom by
having such a broad conversation. And I'm grateful to you
for doing that. And people are more willing to do
that now. And as that's happening, people like End of

(01:10:08):
Life dulas are saying, there's a place for us now
to have a title, to have a structure, to have
to market ourselves as professionals and get the training we
need to earn that right to help people who want
to have a more empowered experience. I love that, and
you know, and that is why I'm doing this. I'm
the type of person who, probably to a fault, is

(01:10:31):
too active all the time, and I'm the type of
person that has to be doing And so I found myself,
you know, not getting out of bed some days, and
that is totally unlike me. And then it was I'm
binging thousand pounds sisters, and I'm binging Hoarders and I'm
binging Unsolved Mysteries and I'm like, you know, days and

(01:10:51):
I'm like, what am I doing? And while I enjoyed,
you know, thirteen seasons of Unsolved Mysteries, I was getting
in a rut of it's turning into a spiral. And
so the day my mom passed and I'm like, I
have an idea for a show and it's called Death,
Grief and other shit we don't discuss, and it's thirteen

(01:11:12):
episodes and blah bla blah blah blah blah blah. No
idea why I would do that hours after my mom passed,
but I'm glad that I did, and that led to
obviously doing the show and what I said to them
because right after my mom passed, I'm searching podcast for
Frank Talks on Death and I found a lot of

(01:11:33):
lecture type podcast which is great, but it's just not
for me. And I found a lot of straight up
interview based shows. I wanted something that was a mixture,
something that I could relate with, where I'm talking to
somebody that I know their story mixed with the subject
matter experts. So that's where I decided I want to

(01:11:55):
do that. And it was also a challenge to myself
because I'm the type of person that I not that
anybody loves going to funerals or viewings or whatever, but
I would actively try to not go before she passed
for at least two months. I would say, I need
to know you're gonna be okay, and I would get defensive,
you know, and really kind of nasty almost, And I'm

(01:12:18):
was extremely you know, I'm extremely close with my mom,
and I would get kind of nasty, like what are
you talking about? Mom? Like, I'm gonna be fine, You're
gonna be fine. Why wouldn't I be okay? Everything's cool,
you know what I mean? And then she would like,
you know, maybe a week later or whatever, bring it
up again, Kyle, you know, can you just please let
me know that just no matter what happens, you're gonna

(01:12:39):
be okay. And I'm like, why are you talking like this?
You know, like, what are you talking about? Mom? Of
course I'm gonna be okay. You're gonna be golden, So
I'm gonna be golden, you know. Finally, a few days
before she passed, she said Kyle like, for me, I
need to know, for me, please give me that piece.
You know, are you going to be okay? And then

(01:13:01):
of course I broke down and uh, and I'm like,
you know, I don't know how I'm gonna be okay,
but I'm gonna find a way to make it through,
you know. And I don't um. I don't want to
live my life without you, but for you, I will.

(01:13:24):
You know what I'm saying, because because I owed her
that piece, I also kind of joke that it was
an underhanded scheme on her part that her saying that
is going to make me have to stick to that.
You know what I'm saying, I'm kind of a mom
thing today. Yeah, and so I am okay, Mom. You

(01:13:47):
know I I'm trying the very best I can. And
this is one of the ways that I'm trying to
be okay. Is that maybe this conversation that we're having
right now, maybe it's spurs somebody else to say, wait
a second, you know what, maybe I can talk about
my end of life or whatever I'm gonna die. You know,

(01:14:08):
I always knew I would die, but I never knew
I would die, you know what I'm saying. And when
you're suddenly faced with the death of somebody so close
to you, especially when I feel like it's premature, you know,
she should have had another twenty five thirty years. It
kind of made me realize my own mortality. And then

(01:14:29):
I'm like, oh God, what am I gonna do, you know,
for my death? And how am I going to handle that?
Every single thing I love, from my dog to my
Maleman to you know, if I get married or something,
like everybody that I love is going to die. How
do I handle that? This whole thing kind of got
me forced, almost in many ways, to start that conversation,

(01:14:51):
And there were two ways that I could have gone
with it. I could have continued on that, like let
me just binge watch thousand pounds sisters and deny that
any of this is happening, or let me go and
talk to the people who know what the hell they're
talking about, and maybe they could give in some insight
into what I'm going through. Because if they're giving insight
into what I'm going through, there's you know, ten times

(01:15:14):
that amount of people that are also going through it
that could be benefited from these conversations themselves. Sorry, that's
really long winded. No, But that's what we need is
for people to be able to and you know, I
love your mom. Good for her because she was she
was just really trying to get you, and not to
say it's not going to be sad, you know, Okay.

(01:15:35):
It's such a loaded word. And we do try to
coach people. Don't ever tell people it's going to be okay,
because you know, if you say it's going to be okay,
then we will agree with you. But I'm never going
to tell you it's going to be okay because it's
such a loaded word. But you know, what she wants
to know. It's not that you're not going to be
sad now, that you're not going to have moments where
you just miss her so much, but just that you're
going to keep moving and maybe do something with that grief.

(01:15:58):
And that's what you're doing. And I'm a personal advocate
for finding the thing that you can do with your grief,
the activity that like lets it out in a positive
and a healthy way. And that's exactly what you're doing.
You're taking your talent think that you're good at and
you're using it to work through your grief too. And
by talking, I mean there's a reason why we go

(01:16:19):
to therapists. You know, talk therapy is powerful. You know,
doing this is another sort of version of that. I
think of just letting it out, yeah, let it out, yeah,
and having a safe space to do it. On the
opposite side of what you do, it's called a funeral director, right.
Licensing is tricky, So I'm I am license. I can

(01:16:41):
only say that if I work for a funeral home,
which I do. So if I had a funeral director's
license but wasn't employed, I couldn't say I was one.
Gotcha legal stuff. So however, yes, I am a funeral director.
Not everybody you meet with necessarily has that title. Sometimes
their funeral arrangers. Different states have different rules around it,
lots of rules around the funeral professionals, and all the

(01:17:02):
states have their own. So that's another reason maybe people
are drawn to end of life dual is there's a
lot less hoops. Yeah. Currently, I just spoke with a
doctor who told us what happens physically when we actually die,
when the body is whisked away from wherever, whether it's
home or the hospital or wherever, what happens from there. So,

(01:17:28):
depending on the rules, a person in California let's say
a person has to be embalmed or refrigerated within twenty
four hours, so that would be what happens one, right,
So we come from the home, We go to the home,
retrieve the person, bring them into our care, and then
we put them safely wherever it is that they need
to be, so in refrigeration if we need to do that,

(01:17:48):
or if someone can perform an embalming relatively short time,
we get prepared to do that, and then it depends
from there what the next steps are. So is there
a funeral, is there not a funeral? Is there just
to cremation? Is there a service and then a cremation?
And now there's new options in other states too, So
there's composting, human composting which just became available in several states.

(01:18:10):
There's water cremation, alkline hydrolysis, so different ways. But I mean, basically,
we have to figure out what's in between retrieving the
person and the disposition we could call it. So then presumably, well,
I guess it depends on the situation. The family would
have already spoken with you guys and come up within

(01:18:31):
end of life plan, but not always right, right, Well,
if you're a funeral home. So that's the thing. Many
people come to a funeral home with no plans, they
don't know what they want, and there's a lot of
kids or a lot of family, and then you've got
different opinions and it can be sometimes it takes time
to navigate what's going on. But sometimes it's very clear,

(01:18:53):
like the person was Catholic all their life, that you know,
regular church goer, and so they're obviously going to have
their Catholic Mass and their visitation and the same that
are I guess you can't say obviously because you can't
just assume, right. Also, you can't assume, so you know,
you might expect though that they'll just come in and say, well,
we want these things. But people will go with either

(01:19:13):
what their culture or religion dictates, or they'll do what
they saw someone else do and they thought that worked
out well, or they'll do what their financial situation can handle.
So it really depends on a lot of factors as
to what happens next. But for me, I'm going to
use this platform like I really that's one thing I
wish I could do more as a funeral director funeral

(01:19:35):
wrang that maybe I can do more if I am
speaking as an end of life doula is to really
encourage people to decide, to look at their options and
to come up with what they feel is best for them,
but also to let their kids or their family have
some say into what that might look like. Because ultimately

(01:19:56):
the service or whatever happens should honor that person that's dying,
but it should be the thing that the family needs
to get through because they're the ones here. They're the
ones that have to have their moment, They're the ones
who have to grieve, They're the ones that need that
ritual to as a part of their grieving process. So
collaboration talking about it, kids out there recognizing that their

(01:20:20):
parents are mortal and so being willing to say, I
know you're gonna die someday, and so let's talk about
how best I can honor you but also get my
needs met. How do we make this work? What are
we looking for? The more you talk about it now
and the more you get an idea of like what
the laws in your state, like what I mean, that's
a big deal, Like next of kin laws are such

(01:20:41):
a through a wrench in the work. Sometimes because you
might be the closest person in the world best friend
for a million years. There's no other family. We don't
really have rights because you aren't. You know, the legal
laws says you don't have rights. I can't stand that.
So you know, figure out who's in charge, who's being delegated,
but also who's in ars legally. You know, get to

(01:21:01):
know what is available to you, and then be willing
to explore things that you may not even feel like
you could do, like, you know, home services, you know,
something like stay at home or you know, go to
a park or go to a country club. I mean,
whatever it looks like for you. But the more we
can talk about it now, the more when you step
into the doors of a funeral home on the worst

(01:21:23):
day of your life, the more you feel like, I
know what I'm here to do, and I know what,
at least somewhat what to expect. You know, there may
be some curveballs, but I know I'm walking in with knowledge,
you know, not just devastated and nothing and I don't
know anything, and I've got three other people to argue
with exactly. And you know, that's that's one thing that

(01:21:44):
I can say, I'm so thankful for my mom and
dad for doing is they years before any of this.
They had preplanned everything, so I knew exactly, you know,
in case of kind of like that break this class
in case from and say, yeah, yeah, I had that
plan where I knew what they wanted should the worst

(01:22:04):
case scenario happen. And then of course when it did
with my mom, you know, luckily my dad was there,
but there wasn't any agonizing over decisions or anything like that.
It was very you know, I remember when my dad
went there, he came back, you know, shortly after, and
I'm like, uh, did you go, And He's like, oh, yeah,

(01:22:25):
I just had to drop this, Like they everything was
already taken care of way ahead of time, so it
made it so much easier. And then you think when
you bring more family into it, or if I had
brothers or sisters or something and they didn't have this
plan and my brother wants this for her, and my
sister wants this, but I want that, and then if
there's no plan, that is just not only a disaster

(01:22:48):
in the making in regards to these choices, but but
the agony that you're going to have with your loved
ones in as you said, the worst time of your
life on top of that, Yeah, you got you have
other stuff to deal with you. You want to focus
on what you need to do to work through your grief.

(01:23:09):
You know, work through the other stuff. You don't need
the red tape and all of that to bongy, don't
even further work and making decisions. So I am a
big proponent as much as you can learn ahead of time,
and which is why I love the End of life
do list so much, because they really do get that
piece before someone passes. As a funeral home professional, sometimes
it's too late to give information and drives me nuts.

(01:23:32):
So as a professional and deathcare for over twenty five years,
Karen has seen a lot. When we come back, I
asked her what the universal truths she's learned on the
human condition and death. Ever since I was little, I've

(01:23:57):
always kind of wondered, and I feel, as ophical manner,
what the universal truths are about the human condition and death.
As humans, there's got to be some connection that when
we lose somebody so close to us that we love,
that are true for all of us? And what about death?

(01:24:17):
Obviously we aren't all scared to die, but a lot
of us are. I know I have been as an
end of life, dula and a funeral professional. I thought
Karen would be a great person to ask what are
the universal truths that she's learned in her decades of
experience on the human condition end on death. The thing

(01:24:42):
that I've learned the most is that it sounds simple.
People need to talk, and the ones who don't feel
like talking, you don't pressure them, but you give them
the space for when they're ready to talk. And just
to see the difference it makes to listen to somebody
versus get through the business, you know, run along or

(01:25:05):
whatever whatever it is. But the more you're able to
just sit with someone and let them talk about the
person that they love, you see a change in their face.
You see their like I can't describe it, but it's
a it's something that I when I see it, I'm
so grateful that the person is having that experience. So

(01:25:25):
there's that. I would also say that more often than not,
when people take a proactive approach and lean into death
instead of push it away, it is often like you're
sharing that it's a better experience than what you were
thinking it would be. I think our brains build things up.

(01:25:47):
I mean, anything we're not looking forward to right, it
just builds it up into this monster that we're afraid
to face, and then when we face it, it's typically
less scary than our brains. Our brains are really good
at making things more scary, and not that it's not scary,
and not the it's not so much. But it's one
of those things. The more you practice, the better you
are at it. And that's, you know, that's and then

(01:26:10):
that helps you in all kinds of grief too. If
you start with this thing that's the most the thing
that will probably be the hardest grief situation that you'll
ever have in your life. If you practice leaning into that,
all of the littler things that you do start to
be what they are, which is not so big, you know.
So I feel like that is the truth. The more

(01:26:33):
you experience it, the more you are willing to put
yourself into that process, the better you'll feel. There are exceptions.
I don't want to you know, I don't want to
say that, and then you give that gift your kids too.
So for people who have young ones around you, as
they see you make it not scary, then they don't

(01:26:55):
grow up necessarily to think it's so scary either. And
that's the way I think we sort of change society
if we want to do that is maybe start approaching
things in a healthy People say normalized, and then people
say not to say normalized because it's normal, right, So
you don't want to say like normalized conversations around death.
But death is normal and it's common, but it's hard

(01:27:18):
to talk about. So just talk about the things that
are normal, you know. And it makes us more empowered,
It makes us walk more confidently, It makes us make
decisions that we wouldn't make if we were so scared. Yeah,
and you know, as you say that, it also makes
me think that it allows you to make more informed

(01:27:42):
choices rather than having to make hesitant in the moment
panic choices later on. Well, and then there's a time element, right,
so you have time now, but once a death has occurred,
you're sort of out of time. You've got a little
you've got a small window, but it's a small window.
So now you have lots of time to explore and

(01:28:04):
learn and read. You know, having a death duela is great,
and I absolutely encourage it, just like I encourage birth dulas.
But you can empower yourself to have that same knowledge
and do that same thing for yourself and your family.
But just by gathering stories like being willing to listen
to people, volunteering for hospice, attending funeral is like talking

(01:28:24):
to people, you can develop those skills within yourself. How
are you able to do all of the things that
you do? And I am so thankful for that because
I could not do it. How are you able to
do it? I don't know. That's like the million dollar question.
I don't know. I go back to this natural gifts

(01:28:44):
and talents. This is what I was put on earth
to do. And I one percent believe that I am
a deathcare worker. There is nothing else that I will
ever be. I started at eighteen. I will die being
a deathcare worker. It's how I am meant to serve others.
I don't know why I was built that way. I
don't know what in my brain makes it palatable. It

(01:29:06):
just always has been. And as I've learned more, I've
increased the tools in my toolbox and it's just made
me more empowered and more able to stand confidently on
this career that I've I've done And you know why
am I not a dentist? Because I can't do it?
You know, I don't know. I don't know. So I
think people people are built to be who they are.

(01:29:28):
If you're lucky enough to tap into it and have
the resources that you need to do it, if you're
lucky enough to tap into your gifts and talents like
that's that's where people what they call it, they're your
dhrma know, when you just tap into that thing you
were meant to do. So I was meant to do it,
and I know a lot of other people feel the
same when they're called to this work. I was just
meant to do this well. And thank God, the universe, fate,

(01:29:51):
whatever you call it, because we need people like you
that not only are in this business, but that are
in this business for the right reasons. You know. I
want somebody who loves, you know, is going to be
as loving with my mom as I would be if
I'm unable to be there or whatever, you know, if

(01:30:13):
I have to go to work or something and I'm leaving,
you know, my mom in the care of somebody. I
want somebody who's there because they love this work and
they want to be in the service of others in
that way, especially because a lot of it I wouldn't
be able to do myself, you know, And so it's
thank god we have people like you that are able

(01:30:36):
to do it and find meaning in doing it, because otherwise,
you know, we wouldn't want the type of people who
are only doing it for a paycheck or something to
be doing this, you know what I mean. Yeah, And
I think that most people who are who are here
and who stay, I mean, I think if you're not
meant for it, you fall out of it. You know,

(01:30:57):
people can read that, or you just natural selection fall off.
But I think I think it's a calling, and I
think that the people who are called to this work
are here because they overwhelmingly care about people and this
is their way of helping other people. And then we're
grateful because people like you get to do this and
give us a place to talk about the thing that

(01:31:17):
we love most, you know, talk about the thing that
we the gift that we're meant to give people, and
you gave us the gift of being able to talk
about it, which is also important to us. So thanks well,
of course, thank you. And so finally, grief. You have
dealt intimately with grief, both kind of pre grieving, if

(01:31:38):
you will, you know, knowing somebody has a limited amount
of time here, and then the kind of post death grieving.
What have you found with grief? What have you found
that are some tips that can help people on both
ends getting a diagnosis, what are some tips there? And

(01:32:00):
then after that person has passed tips there in the
grieving process. The stages of grief are pretty well known,
or at least that there are stages, right, So I
think it's important to note that they are not linear,
They're not in an order. You will experience maybe all

(01:32:21):
of them, maybe it's simultaneously, maybe at different times. You
never know at some point what is going to hit you,
like and when you may not be anticipating it, and
like out of nowhere, you're watching Netflix, right, And there's
a part of that you just have like accepting that
roller coaster is a part of it. You're on a
roller coaster and life is a roller coaster, and then

(01:32:43):
this is just another part of it and you're on it.
You're on it, so that's what you volunteer for when
you get on this ride. But also everyone you love
is on a different roller coaster, so you're not at
the same swoops at the same time. So grief is
not going to look a certain way. There are patterns

(01:33:04):
that you might notice or themes, but it does not
affect everyone the same way, and so shows up for
you and honor the way it shows up for somebody else.
They do say that time makes it less acute. I
don't think grief ever goes away. I don't think there's
a moment that you say I am done grieving. I

(01:33:25):
think it is constant, but it doesn't feel so overwhelming
after some time has passed. Now, some people have complicated
grief and some people there's a lot of different factors
that are involved, and sometimes you know, finding a therapist,
finding someone who can support you in that way, who's
a professional. I don't. I tell everybody, like, don't be

(01:33:47):
afraid of therapy, like therapist goal Fee. We should all
have a therapist. I agree. So, like, you know, don't
be so hung up on what you should be feeling
that when it starts to get too much, that you
don't reach out for professionals. I think one of the
biggest lessons that I've learned doing this series over the
last you know, almost a year, is that grief, as

(01:34:12):
you said, will never end. You know, your love for
that person doesn't end. You learn how to live with
the loss. You learn how to adjust to living with
that grief. And that has been kind of a game
changer for me because you know, I also don't want

(01:34:35):
to stop grieving my mom. And what I mean by
that is I don't want to be a ball of
you know, anxiety and crying twenty four seven. But I
would never want to forget or something. And I'm always
going to be sad, you know. I'm always going to
be sad that my mom, that person that was my rock,

(01:34:55):
my person, is no longer here physically, and so that
is not something I'm ever going to get over. It
really isn't you know. I just bought my first house
and I'm like, damn, you know, she would have been
here uninvited half the time, so I look, I got
your curtains or something. Just that's how she was and

(01:35:17):
she's not. So all of that kind of comes up,
you know, here comes anger again, you know, and it's
gonna be I feel like that for the rest of
my life. If I have a kid or something, I'm
gonna be angry because my mom was taken from me.
And I'm gonna be sad because I want her wisdom
and her love, and so it's learning to live with
that grief and that loss forever. And that's okay too,

(01:35:42):
you know. And it's going to be okay you know
whatever that might mean using that loaded word, but broken down.
You know, I am going to survive this. And as
you said, it's not to say it's not easy or
I'm not going to randomly break down and cry like

(01:36:02):
I do sometimes today. But I will stop crying at
some point and be able to function, you know. Yes, totally, yep.
And what a powerful thing if you do have kids
someday to be sad in front of him and say,
you know, my mom would have loved you, you know,
and I'm sorry that my mom wasn't here, but she
you know, she was this. You know, they'll see one,

(01:36:26):
they'll learn about her through you, and she won't have gone.
I mean physically she's gone, but she'll still be there
and your kids will learn that. There will be lost,
but we can still talk about we can still there's
still so much left loss of her. Isn't everything lost,

(01:36:46):
you know, And so that'll be a powerful thing for
you to take that grief and make something with it later,
make it empowered little kids take that grief and make
it something later. I love how Karen said that the
loss of her isn't everything lost. And what that means

(01:37:10):
to me is that though Mom isn't physically here, she
is here with me. She promised me that on her deathbed,
and I feel that I know that to be true.
So what do we do? How do you deal with
the aftermath? How do you get through on the next

(01:37:35):
episode of death, grief and other shit we don't discuss.
We deal with the immediate aftermath of losing someone that
you love so much. What do you do in those moments,
those minutes, those hours, those days afterwards? How do you
get through? And I talk with doctor Kenneth Doka, Senior

(01:37:59):
Vice President and for Grief Programs at Hospice Association of
America and author of Grief as a Journey, Finding Your
Path through Laws. We discuss how grief is not an
illness that you recover from, but an individual and ongoing journey.
For handouts, additional information and resources, please visit our website

(01:38:22):
at death and Grief dot com and continue the conversation
on Twitter and Facebook.

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S1/E4 4: The Death of Her

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