June 17, 2024 • 47 mins
People think about living well, but have you considered dying well? What would it look like if you had it your way? We spend time planning the important moments in our lives- weddings, births of our children, but what about the last moment of your life? Lacey, Keira, Holly and Whitney welcome hospice advocate Arnetta Robinson to the show. They discuss the gift of hospice and how you can create a meaningful experience for yourself or loved one. Spoiler alert: Some plan for everything from roses on the bed to a good looking visitor reading poetry in the room to Whitney playing the ukulele....it's all in the planning.
This episode is brought to you by Roger Brooks and his team at Strategic Investment Management. As an Austin-based fiduciary financial advisory firm, Roger and his team bring decades of experience and empathy to help people regain financial control through life's ups and downs so you can move forward with confidence. www.strategicim.com. 512-341-9898
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Episode Transcript
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(00:00):
This is every widow thing. Before we start this episode, we
do want to give a shout out to Sweet Pearl, Holly's dog.
She had to put her down recentlyand it brings up.
A lot of I. Know it does it it is a it is
such a painful thing it. Was really hard.
(00:20):
Yeah, she was 13 1/2. Well, and it's also an extension
of your husband. It was just weird, like all the
flashbacks of like when Toby andI picked her up from, you know,
when she was a puppy and when wegave them, showed her to the
boys. And, you know, it's like, weird.
All these flashbacks were just like floating through my head.
(00:43):
And seeing your kids as they've grown up with Pearl.
And the hardest part was watching Zach say bye to her.
It's heartbreaking. It really is.
Anything our children go throughhits US twice as hard.
Yes. Today's episode is brought to
you by Roger Brooks and his teamat Strategic Investment
(01:03):
Management. As an Austin based fiduciary
financial advisory firm, Roger and his team bring decades of
experience and empathy to help people regain financial control
through life's ups and downs so you can move forward with
confidence. All right, well, we are ready
for our guest. Most people have heard of
Hospice, but they really don't understand what that means until
(01:25):
they are living it in real time,which is not the best way to
learn about Hospice care. So we have a great expert here.
She's my good friend, Arnetta Robinson.
She is currently the chairman ofthe board for the Pacific
Hospice and Palliative Care Foundation.
She's a community relations manager at one of the largest
hospices in Orange County. And she is here today to educate
(01:47):
us on all things Hospice. Arnetta, thank you for joining
us. Hey, Arnetta, I'm Lacey.
I'm Holly and Kira's not here today.
We're. Pretending.
Well, actually, this is Kira right there.
Of that pillow, you should have brought her face.
She's looking. Really good.
Yes, she's on a year. She's.
Visiting her oldest daughter. My pleasure.
I'm so honored to be here with you guys today.
(02:09):
How long have you been in this field?
I've worked in Hospice for about22 years now.
Wow, wow, wow. So you've really seen it
develop? Because I would assume that when
you first started people weren'tas aware of it or maybe using it
as much. Is that a fair statement?
Fair, fair statements. I actually got into Hospice
(02:30):
because my sister died without Hospice.
And so that was my impetus to toreally get involved with Hospice
work. I worked in healthcare as a
clinician and she really didn't get the best in the life
experience and I really wanted to kind of that's that was my
passion. My I left my mess be my message
(02:52):
and so transitioned and pivoted into Hospice work.
I always say I'm really great atlost.
My father was killed in the lineof duty sudden death.
My brother was killed in a car accident and I had another
brother that was actually killedand then my sister died without
Hospice and three years ago. This Mother's Day will mark the
(03:16):
three-year anniversary of my mother's death.
She had a beautiful end of life experience and she I was able to
give her the gift of Hospice. You are definitely an expert on
loss and grief, so we're really excited to have you here with
all of your knowledge and personal experience.
Can you explain what is Hospice like?
(03:36):
Just start there. Yeah, let's let's, let's start
there. Well, Hospice was introduced in
about 1972. It is a benefit that is covered
by most, most insurances and in the nation we really look at the
Medicare Part a benefit. So it is a program designed to
meet the clinical needs of an individual, the emotional needs
(04:01):
of an individual and the spiritual needs of an individual
at end of life. So it's comprehensive
interdisciplinary team approach consisting of a physician, a
nurse, a supplemental bath aid, a chaplain, volunteers, and most
(04:21):
important, our bereavement coordinator who follows our
patients for 13 months after a loved one has died just to make
sure that the family is coping well.
There are different levels of care that are integrated into
the Hospice program to meet all the needs of an individual.
Most of our patients, we see them make intermittent visits.
(04:45):
However, there are another levelof care in our other levels of
care in Hospice that we tap intoif a patient has a crisis
situation and we coordinate equipment, supplies and
medication. And our goal is really to walk
alongside our patients and theirfamilies during this time in
(05:07):
their life. Who qualifies for Hospice?
Because I I feel like sometimes it's someone that is 2 weeks
away, sometimes it's three months away.
When would we know when that time is?
Like how do you know when it's near?
I'm so glad you asked that because unfortunately people get
Hospice too late and we can't really make an impact in their
(05:29):
life. So most of the time it's the
national length of stay for Hospice in the nation is 14
days. And so really it's it's that
shift. It's when we in the medical
community, we have to be brave enough to open up the
conversation. So if we're looking at an
(05:50):
individual and based on their clinical needs, if we ask
ourselves, would we be surprisedif this individual died in the
next six months? And if the answer is no, we
wouldn't be surprised, We shouldopen up that conversation, lean
into having these uncomfortable conversations because if you do
(06:10):
qualify for Hospice and you do get on sooner, studies show you
live longer and you live a better quality of life and your
family is really supported and prepared to what is coming up
next. So it just provides a good death
and a good dying experience. Even though this work is so
hard, it's so important when we start to see patients who have
(06:35):
nutritional changes, that's a big shift that's our bodies are
very robust. And the biggest system is our
digestive system, our immune system.
So we see these patients bouncing from home to hospital
to skilled nursing facility and they they have an overall
decline. So as we, as we walk through
(06:58):
life with our loved ones who have serious illness, start to
pay attention. Because I think for a lot of
people, you, you kind of think, oh, well, if I call in Hospice,
we're giving up. We're basically just pushing
them into the light, so to speak.
I mean, we have to do that cultural shift in the nation
because Hospice is at forbidden taboo word we don't want.
(07:20):
We think if we say it, it's going to happen right away, and
sometimes it does. The shortest amount of time I've
had a patient on is a couple of seconds, and the longest is four
years on Hospice. Oh wow.
That was going to be my question.
There's not a time limit on Hospice like that Medicare
covers or. There, as long as a patient
(07:41):
qualifies. The beauty of Hospice is we're
always evaluating to the needs of our patients and sometimes
our patients graduate from Hospice because they actually
get better. I had to discharge 106 year old
patient from Hospice. Oh, wow.
It's just the doing this work and it's so important that we
(08:01):
access at an appropriate time and patients can be on Hospice
as long as they're having a a decline.
I think mentally people start tolose their will to live if
they're constantly going from their house to their hospital to
a rehab place, back to the hospital.
It they just get exhausted, right?
(08:24):
Since that they may. Yeah, I think I might live
longer if I was just at my own home with my family.
But can you explain what does itlook like?
What exactly is happening? I know there was a bed that was
delivered and then a big bag of drugs that they put in the
refrigerator or something. But can you kind of walk us
(08:46):
through the problem? I'll walk you through.
I always say we labor coming into this world and we also
labor going out. No2 deaths are alike.
No2 Hospice experiences are alike.
So it's, and this is the beauty,getting Hospice in sooner 'cause
you get to create what's important, what you want to do,
(09:09):
how you want to live your life. So the first step is getting an
order from your physician. Once we get that order, we make
an appointment, we go out, we sit with the family.
And I always say at the clinicalinformation, I just tuck that,
put that aside. I want to know about the person.
I want to know what their goals are.
(09:32):
So we sit down and we evaluate for things like equipment, which
is covered under Hospice medications.
We do keep a comfort kit. So that bag of medication in the
refrigerator, it's a, it's a comfort kit.
And most people assume that we come in with morphine and we're
gonna give you morphine and you're gonna die really soon.
(09:52):
Some people use it, some people don't.
It's just they're in an emergency.
And then we enter, we start to assign A-Team a dedicated team
that's going to walk with you. These individuals are there to
support not only you or your family.
So it looks we talk about from aclinical standpoint, we talk
(10:13):
about pain management. We have a social worker on the
team that offers emotional support, having difficult
conversations sometimes with family members on processing the
whole idea of dying, making sureyou have your affairs in order,
your Mortuary in place, because we do, we do contact the
(10:33):
Mortuary when a patient dies. We also offer that spiritual
support. So you get that and it looks
different. I mean, I've had a patient who
recently he went skydiving. I had a patient.
Who? Yes.
Do you have the energy? If you have a pulse, you're
(10:53):
alive. Really, the point is that you
have all the say in in how you want to live these final days.
So if you want to go skydiving, yeah, interesting.
Yeah, you always think about it because on TV they show Hospice
as they're all still lying in the bed just waiting to get
their morpheme and dying. And I realizing now that that's
(11:14):
not it at all. It's just there for them as
their trends transitioning. Yeah.
But I think that's how our society thinks of Hospice.
I mean, my dad was on Hospice very briefly.
I was not around because it was two months after my husband had
(11:35):
suddenly died. But I remember on the phone with
my mom and I was like, you need to call Hospice.
And she said, well, that's for people that are dying.
And I'm like, he's dying and I wish she'd called much sooner
because she would have had it sounds like what you're saying.
So much more support rather thanfeeling alone.
(11:58):
Our biggest, the biggest part ofwhat we do is training and
education. So we start to talk about what
you're going to expect, what you're going to see, how that
how how that's going to look. And especially since we are
experts on different end of lifedisease processes, we're able to
really talk to that. The biggest thing is in stage
(12:19):
nutrition. You know, I come from a family
of nine Buddha's, you know, the heart of our family.
And so even when my mother was kind of at that point where she
was transitioning, she stopped eating and drinking.
And my brother was like, we needto get her an IV.
She's dehydrated. My sister was making food all
(12:40):
the time, but she just, her bodyjust didn't eat it.
So we start to have these conversations about what that
looks like. I always say it's it's, it's OK
to die dry our bodies. To die dry, you should get a
T-shirt. It's OK to die dry.
(13:02):
Well, I think people assume thattheir bodies are feeling the
same as a healthy body. So like, if I'm dying of thirst,
that's uncomfortable and I don'twant my loved one to be
uncomfortable. So they've got to be starving.
We've got to give them some foodor some water.
Is is, is their body handling itdifferently?
(13:23):
They're not feeling what a healthy body would feel.
The body's a beautiful thing when we I talk about, we labor
when we're going coming into this world, we labor when we're
going out. Our body knows what to do.
So when you're born, you don't just start off with a steak and
eggs, you start off with breast milk and formula.
Then you graduate to cereals, tofinger foods, to hearty foods.
(13:46):
You kind of go in the opposite direction at end of life.
And that dehydrations that people experience at end of life
actually kicks off some hormonesin our bodies to help with paint
and aid in and with those types of end of life discomforts and
our digestive system slows down so that foods and, and hydration
(14:09):
sometimes doesn't have anywhere to go.
So we always talk about risk andbenefits of everything.
I mean, sometimes, I mean, I've had a patient who had a Big Mac
and, and A and a shake before they died.
I've had patients who've gone three weeks without any food or
anything. So again, it's just very unique
(14:29):
to the person and individual. So there's a lot of mess about
Hospice. I'd love to know, like what it
actually looks like. I've read a lot about it because
of what's happening with my mom.Mother will probably be the one
with the McDonald's because she made me go get her one while I
was there and just stuff like that.
Like what you look for. Like what would I, how would I
(14:49):
know that it's actually in the process of let's just say it
happens while she's at this facility.
Like how would I know? You may see changes in the color
of skin, you may see an individual who has very drastic
temperature changes. You may hear that that rattle
(15:12):
respiratory issues that come up.Our body's really laboring.
So sometimes it's it that you don't have any of these things.
Sometimes individual can have all types of complications.
So it it really does look different from each individual.
(15:32):
But that's the beauty of Hospice.
We're there to kind of explain and guide the family what's
normal and what's not normal people.
The one big thing is people think that Hospice is going to
come in and they're going to be there 24 hours a day, seven days
a week, right with you in your home.
And the reality is most of our patients are on routine level of
(15:56):
care where we're making intermittent visits.
And caregiving is not covered byMedicare or most insurances.
Long term care insurance covers some caregiving expenses.
But the sad part in our nation is that it falls on the
families. So it's something that we don't
(16:18):
discuss or the cost of caregiving to hire private
caregivers to come in to assist with the day-to-day care.
We call that activities of dailyliving in our in our little
world here, the bathing, the grooming, the changing, who's
going to be there to shoulder the responsibility of taking
care of this loved one. And that's something that people
(16:41):
assume it's it's Hospice is going to come in or Hospice is a
place you go. Hospice is a service that that
comes to you now state to state.There are Hospice houses in
some, in some places, California.
We have a Hospice House here in Orange County, but it is, it's,
(17:02):
it's a daily rate that people have to pay to, to live there.
My grandmother was, was that a regular facility, which is
probably what my mother would be, and then that they would
bring in Hospice. So that's why I was asking like,
how would they know? Yeah, the medical team has to
has to say, look, there's no, I think that's what you were
saying earlier, right, Arnetta, that y'all need to educate the
(17:24):
medical team and make them understand.
Look, when you think there's nothing more that you can do,
that's when you suggest Hospice,like the doctors typically
suggest it. I would always advocate.
Unfortunately, 85% of healthcareprofessionals are uncomfortable
(17:46):
talking about death and dying. I I run into that all the time.
You have to be an advocate for yourself and your loved one.
It's sitting down with your teamand saying this is my goal.
Or if you have cancer with your oncologist.
I'm, I'm in the fight. But at this point, I, I, I I
(18:09):
just don't want any other treatment options.
I want to explore something else.
It's a shift going from yeah. My friend's father did that,
Yeah. He just said he he was in the
hospital. They were doing all this stuff.
They were about to transport himto another hospital and he said
I'm done. I don't, I don't want to do any
of this. I just want to live out the rest
(18:30):
of my days at home watching TV and hanging out.
And that's when Hospice was called.
So yeah, it's a hard thing to tobe able to recognize that your
loved one. I mean, we don't want to say
goodbye so. We don't and it's hard and and
you have to listen to your lovedones.
(18:53):
I, I just sit there sometimes and listen.
And when, when I hear an individual say I'm tired, I
don't want to do this anymore. I don't want to go to the
hospital. I, I just want comfort.
Those are key indicators of thatshift and that transition.
(19:14):
And it's so hard because I see so many patients going through
so many unnecessary treatments because their loved ones don't
want to let him go. Right.
Well, and with Lacey, her motheris in memory care, so and she's
nonverbal now, right? She doesn't talk much.
(19:34):
She's still eating really well so I always thought that was an
indicator that she was still doing OK.
But from what I'm hearing from you, someone can eat a Big Mac
and then the next day they're gone.
But she sleeps an inordinate amount of hours.
Most hours she's asleep, she's awake.
Probably 4A day if. We start to see an individual
that's sleeping more, they're withdrawing, they're it's, it's
(19:56):
we have to be brave enough to say.
Can we talk? Have that cost this
conversation? And that's all it is in the
beginning, just a conversation. It's not like you say the word
Hospice and people come running in and grab your loved one and
take them to your house, you know?
I mean, it is a conversation. Talking about this earlier, we
all should have an advance directive.
(20:18):
We should all talk about what wewould want at end of life.
And it's the biggest gift you can give to your loved one is
filling out that advance directive.
Do you want aggressive treatment?
What do you, what does that looklike if you're in an accident?
What type of life saving measures do you want?
(20:39):
Because having those things memorialized, anybody over 18, I
say, should have an advance directive in the state of
California. We have the pulse form for our
patients who we suspect have a year or less and it's a
physician order for life sustaining treatment and it
talks about your code status. Do you want CPR or do you not
(20:59):
want CPR? Do you want comfort treatment or
full treatment? Do you want a feeding tube or
not a do you or opt not to have a feeding tube?
So these are all conversations that we should start having when
we're healthy. But part of the conversation, it
sounds like I mean, and Lacey, I'm sorry, we keep using your
(21:23):
mom as an example, but she is sleeping all the time, but she's
eating. I mean, like what, what
advanced, you know, what communication could you have had
with her before this? What are those questions?
If you're sleeping 20 out of the24 hours a day, what do you want
us to do? Like because there's.
Nothing they can do in terms of.There's nothing to dial down.
(21:47):
There's nothing to She's still breathing, she's still sleeping,
she's still eating and she doesn't move.
They're they're taking care of all her basic needs now.
She's not walking, she's not doing any of that anymore, but
there's nothing to take off. She has a pacemaker, but other
than that I don't. Know just start to we it's it's
(22:07):
our job to demonstrate that a patient when when we do our
evaluation, we're taking the whole medical history into into
view. So you don't.
So what I'm hearing is you partner with the family or the
patient. We don't have to have all the
answers and know everything whenwe go in.
We just say, hey, we'd like to have this conversation.
(22:31):
And then we're. Yeah.
And then the evaluation when we're pulling all of those
medical records, when we're kindof demonstrating that a patient
is appropriate because there's gonna there's gonna be a shift,
there's gonna be something that happens.
It's either an infection or a crisis situation that is
(22:53):
emphasis to Hospice care when weshould be having a conversation
right now. There's signs she's sleeping 20
hours a day. She's more dependent on her care
needs. These are things that you should
start having a conversation withher specialist, with her doctor
(23:13):
and saying, can we open up the conversation?
Can we talk to Hospice? Can I get an evaluation to see
where my mom is? Because knowledge is power.
If if a patient is appropriate for Hospice, getting that
support in walking alongside. Because the the reality is
Hospice is more for the family than it is for the patient.
(23:33):
Because the family is getting that support, they're getting
that emotional support, they're getting their affairs in order.
And you brought up an excellent point that I want to get back
to. People tend to think that
Hospice means you have a Hospiceperson in your home 24/7 to
handle all of that person's needs.
(23:54):
That is not true. Sometimes you're seeing the
Hospice person once a week. They're always available and you
can call them, but you are your family is is responsible for.
If that person can't walk, you have to have somebody that can
get them to the bathroom if theyhave medications that need to be
(24:14):
administered or you know, or daily things like brushing their
teeth and bathing and all of that.
There's not a person from Hospice in your home 24/7.
You have to pay extra for that. So I assume you can bring in
Hospice to like the memory care facility, correct?
You can't we go anywhere a patient calls home.
(24:35):
But it's great to know that if, for example, your mother, she's
in a facility already where she's provided all that care,
but now you want Hospice, that'sthat's a possibility.
And she doesn't have to leave that facility.
She's just getting extra care there's.
So many opportunities that you have with with really leaning
(24:58):
into the Hospice as a whole. Studies show that just the
impact that we make in the quality of life.
You know, there are other services we talk about.
A lot of people mistake palliative for Hospice care.
I would say palliative care is for those people with serious
(25:20):
illnesses and they are still seeking treatment.
They have their their care team,all those specialists that they
see their primary care doctor and they still want to engage in
their care. And it could be what that looks
like for a young patient who hascancer, young mom, maybe she's
her pain isn't managed. So that palliative team is that
(25:41):
support that wraps around her totalk about how how they're going
to manage her pain or it's a social worker coming in to talk
to her children on navigating the disease and what that looks
like for them. And that young mom with cancer
can go and live a full life and,you know, be on palliative care
for, you know, five years versusanother patient who has maybe
(26:06):
90, doesn't want any aggressive treatment, has cancer and now is
looking at her options. Not ready for Hospice, but still
exploring, You know what her options are.
She has a care team, a palliative team that can come
and talk about goals of care. And that could be a bridge to
(26:27):
Hospice. But the misconception that
palliative care is Hospice or palliative means that you're
dying. That's not the care.
It's just I have a serious illness and I need a little more
help. And the palliative team is
really that compass that helps you navigate and there's a lot
of palliative programs throughout the nation.
(26:49):
It's just finding access to thatpalliative program versus
Hospice is really you're transitioning, it's you're you
want that comfort, you want thatsupport and you don't want any
curative needs. As far as support from Hospice
are you getting, is it the same if you're in a home, If you're,
(27:12):
you know, have an illness or dying in your home versus in a
facility or a hospital? OK.
So with the the only difference,there's 4 levels of care that
are built into the Hospice program.
First level of care one, one of the levels of care is routine
Hospice. Most of the people around that
(27:34):
where we're making intermittent visits, the core team doesn't
change. You have your physician, you
have your bath aid, you have your social worker, you have
your chaplain, volunteers, bereavement coordinator, That
core team, no matter where you are, that is your team.
Your supplies, equipment, medication, all paid for.
The levels of care are a little different.
So if you're at home, we're looking at 4 levels of care.
(27:55):
At the routine level of care, like I mentioned every we're
making intermittent visits, thenyou have continuous care.
So if you we get a call in the middle of the night, some things
we can handle over the phone, some things we can't.
We have to send out a nurse. That nurse got there, you're
having respiratory distress, pain out of control, it's not
managed. We may put our our patients on
(28:18):
what we call continuous care where there we deploy a nurse
that is their bedside to really do hands on care and then we re
evaluate that and if the patientis stable, we go back to
intermittent visits. If not, we continue that.
If there's a situation where we can't control the symptom where
(28:39):
the individual is, there is general inpatient level of care
for those individuals that are in a crisis situation, we can't
control the symptoms at home. Again, we're re evaluating that
and we do discharge a patient back to wherever their living
situation was if they can. If not, they do.
You end up dying in that generalinpatient unit.
(29:01):
The patient is at home. We do look at respite.
There are five consecutive days of respite.
Those are the level of care. Remind me what's?
Respite what's respite stand forRespite care is a.
Is five consecutive days of respite.
So we always are looking at the caregiver.
Do they have burnout? Medicare does have a carve out
(29:21):
called respite care where we find a skilled nursing facility
so that the patient can go and give that caregiver a little
rest. It's a tough, tough job.
We will be right back. Imagine a financial partner who
meets you exactly where you are,acknowledging your grief and
taking the time to listen, empathize, and truly understand
(29:43):
what matters to you. Strategic investment management
can help you plan a course that honors your past while embracing
your future. Whether you're worried about tax
implications, paying off debt orstewarding your asset
distributions, Rodgers Team can make a plan that's aligned with
your family's needs and goals. For more information, visit
(30:04):
www.strategicim.com or give thema call at 512-341-9898.
Again, that's 512-341-9898. Tell them you heard about them
on every widow thing. And now, back to the show.
(30:24):
Does Hospice ever say no? Do you ever go in and you're
like, oh man, this is 108 year old man trying to take care of
106 year old woman? I have that a lot.
That's the scenario. We don't want to say no to
anybody. We want to help.
We're in the business of helping.
So it's sometimes getting in there and figuring out what
(30:44):
resources do we have and unfortunately the resources are
limited. This is there is a financial
impact to people with serious illnesses and the care that is
required. And I think that's something
that's not discussed. We're not talking about it
enough because it is assisted living.
You have a monthly bill every month that you have to pay for
(31:07):
that care. You said that Hospice typically
is covered by insurance, but arethere?
Does it depend on your insuranceas far as deductibles and things
like that or is it free? Like what's the?
Story there, I always say that it's a good that book that you
just get in the get once a year that goes over all of your
benefits and usually just stick it in the trash or on the desk
(31:29):
or buried away somewhere. You always want to make sure
that you pull that out that you call.
If you're thinking about Hospice, good idea to call your
insurance provider and saying, do I have a deductible?
What is what percentage is covered?
Most of the time I find that Hospice is pretty well covered.
(31:49):
I mean, I'm occasionally it's of80, twenty, 80% covered, 20% out
of pocket with private insurances.
Medicare covers it at 100% and you could find your Hospice
benefit on medicare.gov and search Hospice benefit.
It's right there, but it's a good idea if you're thinking
(32:10):
about Hospice to call and know your benefit, know what to
expect. Can you tell us what it looks
like on the last day of Hospice?I always say death is a social
event, it's not a medical intervention unless you have
complications. So what it looks like there
(32:33):
again varies. It could be very peaceful where
the patient is just they they have breathing changes.
Sometimes there are complications with the end of
life experience where they may be experiencing respiratory
distress and the Hospice team isthere to control that.
If we know a patient is transitioning, we send our our
(32:57):
our team in for daily visits. So we're touching base every day
to make sure that a patient's supported and sometimes that's
not just a nurse that may be, that may be our social worker
for emotional support, that may be our chaplain for spiritual
support. So it looks different and.
After the body. After.
(33:18):
After the person passes away. Hospice.
You call Hospice, you call Hospice and we call the Mortuary
and depending, some people want a little more time with their
loved ones. So we coordinate with the
Mortuary, but we call the Mortuary.
That's a, that's another benefitof Hospice.
If you die at home without Hospice, you do have to call
(33:39):
911. If you die with Hospice, you
call the Hospice team. OK.
Now why would you call one one? Because.
Someone died because they have. To, well, somebody.
That they're dead. They have to, yeah.
Sometimes the coroner has to be involved with Hospice.
It's just calling the Hospice and we coordinate the Mortuary.
(34:02):
What do we need to look for in Hospice care?
Because. It's, it's, it's you.
I always say interview just likeyou would if you were, if you
had a serious illness. These are, these are the most
important people. They're coming into your home or
wherever you call home. They're you're giving you're,
you're allowing them to provide care for your most precious
(34:22):
possession of your loved one or yourself.
It's always asking, are you going to have a consistent team?
I always say, can I talk to another patient or family that
you've serviced at word of mouth, asking friends, family,
even your physician. I mean, my mom never talked
(34:43):
about death and dying. She would always say, Arnana,
stop talking about what you do. Nobody wants to, nobody wants to
be depressed. But but when she really embraced
it, I took, she went to one of my community events and we had
this gentleman called. His name is BJ Miller.
He's a palliative care doctor. And he was talking about how at
(35:04):
his Hospice House in San Francisco, they sprinkle rose
petals on each of the people that die before they go to
March. Where my mom just got this idea
and she says, Arnette, OK, we need to plan out what I want.
And she did. She said, when I'm
transitioning, I want you to order flowers every three days.
(35:26):
So there's roses there for everybody to sprinkle.
And I would have never guessed. And she planned her whole
funeral, too. And it was a surprise to me
because she had a, she had dovesthat she wanted us to release.
And she knows I hate birds. I hate birds.
But it was beautiful because shegot to do that.
(35:47):
And so it's just finding, finding you have to connect with
that person. I mean, anybody can come in and
tell you what they're going to do, but you have to really trust
in the team that's going to provide and walk alongside you.
So I just say interview 3 hospices, make sure that they
(36:08):
have a dedicated to dedicated teams to eat, meet each level of
care and their their response time.
And how do they support that? Because when you have an
emergency, you need, you need toknow that your team's there.
All good things. I'm, I'm sitting here and I'm
like, OK, I'm not too young to sit down and write out like
(36:32):
things like I want some rose petals on my face.
You know, when I I want them to play some Duran Duran music
while I'm transitioning and. I teased those are.
Their things. Yes, it is my mother.
Before she was not before she was in the facility.
They have everything all writtenout.
The two of them do. And I said look at you still
(36:54):
controlling things even after your die.
It's kind of relieves you of thestress of wondering.
We have to change our thoughts about death and dying because
everyone's going to do it and there's so much fear around it
and so much secrecy and silence.This is the most this is the
biggest event of your life. Why shouldn't you plan and
celebrate that? Again, there is sudden death,
(37:18):
there's gradual death. But as hard as this work is, I
do find beauty in in this time in one's life.
I see beautiful things happen. Funny story.
I had a lady who was the bury ofHospice.
She didn't want to go on Hospiceand her daughter was like, what
mom, why? Why do you want to go back to
(37:39):
the the hospital? And she's like, it's the best
time I have all of these great. When I call 911, the
firefighters come in and they'renice, good looking.
And then I go to the hospital and you get to see these good
looking doctors. And, you know, when I'm at home,
I only have the caregiver in this small space.
And if I, if I go on Hospice, I can't go to the hospital and the
(38:02):
fire department's not going to the firefighters aren't going to
come. So I says, what do you want?
And she goes, I want, I want, I want a hot guy that.
Is hysterical. And I, and I always think I was
like, OK, you know, I, I just say the worst.
I'll, I'll try to make it happen.
I can't promise it. So a big part of what I did
(38:23):
touch on is our volunteers. So there are a certain number of
hours that we have to have in Hospice provided by volunteers.
So I found. A volunteer, a guy.
He was an actor, did like theater, and he would come and
visit her once a week. And.
(38:47):
So much joy. And then you lose a lot with
some of the treatments. And we, we had a patient and she
lost all of her hair, her eyebrows.
And she's like Arnott. I just want some, some eyebrows.
So the foundation was able to give her some eyebrows, some
tattoo eyebrows. And so you just, you see, you
(39:12):
know, family members. We, I had another patient who
hadn't seen his brother in 30 years because he just couldn't
afford to make the trip to California.
So, you know, having the foundation support to get his
ticket to come so he could see his brother.
What's the name of the foundation?
Arnetta because you can donate to the foundation and then they
(39:34):
are able to provide these kind of make a wish.
List. Yeah, we.
Just changed it to living and dying.
Pacific Palliative and Hospice Foundation.
So was a mouthful. That is a mouthful.
I was having a hard time with just saying palliative.
Palliative. Yeah.
So we we really, we really wanted to focus on Hospice is
(39:59):
about living. So living in dying foundation.
So I like to. Know that I could have a hot guy
at the very end. I may not have him now, but I
could have him at the very end. I.
I'm really curious now because can you share some other like
interesting last wishes or whatever or I need some ideas.
(40:21):
We had this one woman I just because I, I get invited into
these conversations and she justhad this beautiful conversation
with their daughter and she had,and it's where I got my my
funeral playlist idea. She had a list of everything
that she wanted playing when shewas actively dying and then on
(40:43):
her at her funeral playlist. Sometimes people, you know, want
it very private. They want to be alone and
sometimes that just happens. Sometimes people are they have
their loved one that sits right next to them.
They go to the bathroom and thentheir loved one dies.
Well, I just think that's protection.
They wanted to protect their loved one.
(41:05):
Just hear one more one in mind because we have medical aid and
dying in California, it's not recognized where patients could
actually take medications to in their life.
It's you talk about those ethical dilemmas and everything,
but it is legal here. So I did have a patient who
said, like Arnetta, I just want to have a date with you.
(41:26):
And I was like. No.
And he? Just said, OK, so I called my my
fiance and I was like, I'm breaking up with you for about
an hour. But he just he wanted to say the
Danishes and he just wanted to share about, you know, life and
how you should enjoy it. And it it was a great
conversation with his sister, both of the sisters.
(41:49):
So it was. Some of those conversations for
just mean the world to me. Share with our audience some
things that you know for sure, as Oprah likes to say.
Just enjoy life, don't sweat thesmall stuff and really you get
an opportunity knowing that I know for sure one day I don't
(42:11):
know when I'm going to die. We all are.
We should really go out and and articulate and get uncomfortable
talking about this part of our life and when we do that we get
a better end of life experience.Like a plan, a birthing plan.
(42:33):
I never did, but you know, lots of people did.
I'm not that big of a planner, but I'm going to plan my I'm
going to plan for my death. I I love that you want to create
your own environment. How?
You don't have to go. You can go on your own terms I
guess is what I'm saying. You've also made me realize that
about that your child should have that.
I didn't even think about that. He has like certain things done,
(42:56):
but there are certain things that we still have never talked
about. The reality is if you have if
you have an 18 year old or aboveyou, they should have an advance
directive. But it can be very much more
specific. You know, it sounds like you you
really need to say a deeper. Conversation.
A deeper conversation about exactly what?
(43:18):
But I think immediately my 18 year old would say some stupid
stuff, so I don't really want toknow what he 'cause he'll change
his mind, you know, like an 18 year old's idea is gonna be very
different. Yeah, they they.
You're going to have to have a conversation every year.
You do, and that's what I say. Every year, pull out your
advance directive and update it.Yeah, I'm sure we can go online
(43:39):
and find some really like deeperquestions, not just a form, but
like really go deep into what you should be thinking about or
considering. Yeah, there's a great form
called 5 Wishes. It's a great advance directive
tool, but there are so many out there.
All right. You, you mentioned about
volunteers, I would love to know.
(44:02):
I'm assuming because this is themedical field in general.
I think they're in dire need of more people.
So our volunteers, I even think I almost recruited you one time,
Whitney, you played the ukulele so you were willing to come.
I had a patient who wanted somebody that knew how to play
the ukulele. Yeah, they apparently wanted
(44:23):
someone that was barely good enough to play ukulele for them.
Play them out. I'm learning a lot today.
Well. We we have a lot of people out
there with a lot of gifts and talents.
So it's not just medical professionals, but we have
people that we have a choir thatvolunteers their time to sing to
(44:45):
our patients. We have people with music
talents, people who like just toread with our patients.
We have a lot of students that that volunteer, they were going
into social work or nursing. So it takes everybody has the
special gift. And if you have the gift to give
(45:06):
to others at end of life, then Iwould always recommend
contacting your local Hospice. We're always looking for
volunteers. Well, I'm excited now to plan
all my death wishes and my playlist and it just, it changes
your perspective on the whole experience because it is an
experience and it's the last experience.
(45:28):
So let's make it really fucking awesome.
And you have to make your photo.You have to put your photos that
you want shown at your. Oh, I'm sure Arnetta, you
probably have already thought ofthis.
You have to make a folder with all the photos that you want
shown at your memorial or funeral.
You don't want the wrong ones. I will share that at my on my
(45:50):
50th birthday, I gave out cards to everybody in a nice PIN and I
said, OK, I want you to write down what you will say, what you
would say at my funeral. And I'm going to put it in a box
and I'm going to have that read.Oh, you didn't read them?
I might put them in a box for your piece.
We can't make it. Right, well, I would be reading
(46:12):
every single one of those beforeI put them in the box.
I might be scared. I'm so grateful that you took
time out of your busy day to share with us.
And I'm, I have to say, it's weird, but I'm a little excited
about thinking of all the fun things I'm gonna do and make my
(46:32):
family do for me. She's gonna be working on her
playlist. I'm gonna start my playlist.
Yeah, my pictures, hot firemen, all of those things.
So thank you, Arnetta. We love you.
I appreciate your time. Really admire what you do.
I do too. That's it's that cannot be an
easy job. No day in and day out.
So. Hard.
(46:53):
So that's really your special. Well, thank you and it's and it
is a blessing to take care of these individuals.
They give me more than I probably give them, so thank you
for having me. Today, Pearl, do you mean the
side eye? Pearl, do you want a bone?
This is every widow thing. Before we start this episode, we
do want to give a shout out to Sweet Pearl, Holly's dog.
She had to put her down recentlyand it brings up.
A lot of I. Know it does it it is a it is
such a painful thing it. Was really hard.
(00:20):
Yeah, she was 13 1/2. Well, and it's also an extension
of your husband. It was just weird, like all the
flashbacks of like when Toby andI picked her up from, you know,
when she was a puppy and when wegave them, showed her to the
boys. And, you know, it's like, weird.
All these flashbacks were just like floating through my head.
(00:43):
And seeing your kids as they've grown up with Pearl.
And the hardest part was watching Zach say bye to her.
It's heartbreaking. It really is.
Anything our children go throughhits US twice as hard.
Yes. Today's episode is brought to
you by Roger Brooks and his teamat Strategic Investment
(01:03):
Management. As an Austin based fiduciary
financial advisory firm, Roger and his team bring decades of
experience and empathy to help people regain financial control
through life's ups and downs so you can move forward with
confidence. All right, well, we are ready
for our guest. Most people have heard of
Hospice, but they really don't understand what that means until
(01:25):
they are living it in real time,which is not the best way to
learn about Hospice care. So we have a great expert here.
She's my good friend, Arnetta Robinson.
She is currently the chairman ofthe board for the Pacific
Hospice and Palliative Care Foundation.
She's a community relations manager at one of the largest
hospices in Orange County. And she is here today to educate
(01:47):
us on all things Hospice. Arnetta, thank you for joining
us. Hey, Arnetta, I'm Lacey.
I'm Holly and Kira's not here today.
We're. Pretending.
Well, actually, this is Kira right there.
Of that pillow, you should have brought her face.
She's looking. Really good.
Yes, she's on a year. She's.
Visiting her oldest daughter. My pleasure.
I'm so honored to be here with you guys today.
(02:09):
How long have you been in this field?
I've worked in Hospice for about22 years now.
Wow, wow, wow. So you've really seen it
develop? Because I would assume that when
you first started people weren'tas aware of it or maybe using it
as much. Is that a fair statement?
Fair, fair statements. I actually got into Hospice
(02:30):
because my sister died without Hospice.
And so that was my impetus to toreally get involved with Hospice
work. I worked in healthcare as a
clinician and she really didn't get the best in the life
experience and I really wanted to kind of that's that was my
passion. My I left my mess be my message
(02:52):
and so transitioned and pivoted into Hospice work.
I always say I'm really great atlost.
My father was killed in the lineof duty sudden death.
My brother was killed in a car accident and I had another
brother that was actually killedand then my sister died without
Hospice and three years ago. This Mother's Day will mark the
(03:16):
three-year anniversary of my mother's death.
She had a beautiful end of life experience and she I was able to
give her the gift of Hospice. You are definitely an expert on
loss and grief, so we're really excited to have you here with
all of your knowledge and personal experience.
Can you explain what is Hospice like?
(03:36):
Just start there. Yeah, let's let's, let's start
there. Well, Hospice was introduced in
about 1972. It is a benefit that is covered
by most, most insurances and in the nation we really look at the
Medicare Part a benefit. So it is a program designed to
meet the clinical needs of an individual, the emotional needs
(04:01):
of an individual and the spiritual needs of an individual
at end of life. So it's comprehensive
interdisciplinary team approach consisting of a physician, a
nurse, a supplemental bath aid, a chaplain, volunteers, and most
(04:21):
important, our bereavement coordinator who follows our
patients for 13 months after a loved one has died just to make
sure that the family is coping well.
There are different levels of care that are integrated into
the Hospice program to meet all the needs of an individual.
Most of our patients, we see them make intermittent visits.
(04:45):
However, there are another levelof care in our other levels of
care in Hospice that we tap intoif a patient has a crisis
situation and we coordinate equipment, supplies and
medication. And our goal is really to walk
alongside our patients and theirfamilies during this time in
(05:07):
their life. Who qualifies for Hospice?
Because I I feel like sometimes it's someone that is 2 weeks
away, sometimes it's three months away.
When would we know when that time is?
Like how do you know when it's near?
I'm so glad you asked that because unfortunately people get
Hospice too late and we can't really make an impact in their
(05:29):
life. So most of the time it's the
national length of stay for Hospice in the nation is 14
days. And so really it's it's that
shift. It's when we in the medical
community, we have to be brave enough to open up the
conversation. So if we're looking at an
(05:50):
individual and based on their clinical needs, if we ask
ourselves, would we be surprisedif this individual died in the
next six months? And if the answer is no, we
wouldn't be surprised, We shouldopen up that conversation, lean
into having these uncomfortable conversations because if you do
(06:10):
qualify for Hospice and you do get on sooner, studies show you
live longer and you live a better quality of life and your
family is really supported and prepared to what is coming up
next. So it just provides a good death
and a good dying experience. Even though this work is so
hard, it's so important when we start to see patients who have
(06:35):
nutritional changes, that's a big shift that's our bodies are
very robust. And the biggest system is our
digestive system, our immune system.
So we see these patients bouncing from home to hospital
to skilled nursing facility and they they have an overall
decline. So as we, as we walk through
(06:58):
life with our loved ones who have serious illness, start to
pay attention. Because I think for a lot of
people, you, you kind of think, oh, well, if I call in Hospice,
we're giving up. We're basically just pushing
them into the light, so to speak.
I mean, we have to do that cultural shift in the nation
because Hospice is at forbidden taboo word we don't want.
(07:20):
We think if we say it, it's going to happen right away, and
sometimes it does. The shortest amount of time I've
had a patient on is a couple of seconds, and the longest is four
years on Hospice. Oh wow.
That was going to be my question.
There's not a time limit on Hospice like that Medicare
covers or. There, as long as a patient
(07:41):
qualifies. The beauty of Hospice is we're
always evaluating to the needs of our patients and sometimes
our patients graduate from Hospice because they actually
get better. I had to discharge 106 year old
patient from Hospice. Oh, wow.
It's just the doing this work and it's so important that we
(08:01):
access at an appropriate time and patients can be on Hospice
as long as they're having a a decline.
I think mentally people start tolose their will to live if
they're constantly going from their house to their hospital to
a rehab place, back to the hospital.
It they just get exhausted, right?
(08:24):
Since that they may. Yeah, I think I might live
longer if I was just at my own home with my family.
But can you explain what does itlook like?
What exactly is happening? I know there was a bed that was
delivered and then a big bag of drugs that they put in the
refrigerator or something. But can you kind of walk us
(08:46):
through the problem? I'll walk you through.
I always say we labor coming into this world and we also
labor going out. No2 deaths are alike.
No2 Hospice experiences are alike.
So it's, and this is the beauty,getting Hospice in sooner 'cause
you get to create what's important, what you want to do,
(09:09):
how you want to live your life. So the first step is getting an
order from your physician. Once we get that order, we make
an appointment, we go out, we sit with the family.
And I always say at the clinicalinformation, I just tuck that,
put that aside. I want to know about the person.
I want to know what their goals are.
(09:32):
So we sit down and we evaluate for things like equipment, which
is covered under Hospice medications.
We do keep a comfort kit. So that bag of medication in the
refrigerator, it's a, it's a comfort kit.
And most people assume that we come in with morphine and we're
gonna give you morphine and you're gonna die really soon.
(09:52):
Some people use it, some people don't.
It's just they're in an emergency.
And then we enter, we start to assign A-Team a dedicated team
that's going to walk with you. These individuals are there to
support not only you or your family.
So it looks we talk about from aclinical standpoint, we talk
(10:13):
about pain management. We have a social worker on the
team that offers emotional support, having difficult
conversations sometimes with family members on processing the
whole idea of dying, making sureyou have your affairs in order,
your Mortuary in place, because we do, we do contact the
(10:33):
Mortuary when a patient dies. We also offer that spiritual
support. So you get that and it looks
different. I mean, I've had a patient who
recently he went skydiving. I had a patient.
Who? Yes.
Do you have the energy? If you have a pulse, you're
(10:53):
alive. Really, the point is that you
have all the say in in how you want to live these final days.
So if you want to go skydiving, yeah, interesting.
Yeah, you always think about it because on TV they show Hospice
as they're all still lying in the bed just waiting to get
their morpheme and dying. And I realizing now that that's
(11:14):
not it at all. It's just there for them as
their trends transitioning. Yeah.
But I think that's how our society thinks of Hospice.
I mean, my dad was on Hospice very briefly.
I was not around because it was two months after my husband had
(11:35):
suddenly died. But I remember on the phone with
my mom and I was like, you need to call Hospice.
And she said, well, that's for people that are dying.
And I'm like, he's dying and I wish she'd called much sooner
because she would have had it sounds like what you're saying.
So much more support rather thanfeeling alone.
(11:58):
Our biggest, the biggest part ofwhat we do is training and
education. So we start to talk about what
you're going to expect, what you're going to see, how that
how how that's going to look. And especially since we are
experts on different end of lifedisease processes, we're able to
really talk to that. The biggest thing is in stage
(12:19):
nutrition. You know, I come from a family
of nine Buddha's, you know, the heart of our family.
And so even when my mother was kind of at that point where she
was transitioning, she stopped eating and drinking.
And my brother was like, we needto get her an IV.
She's dehydrated. My sister was making food all
(12:40):
the time, but she just, her bodyjust didn't eat it.
So we start to have these conversations about what that
looks like. I always say it's it's, it's OK
to die dry our bodies. To die dry, you should get a
T-shirt. It's OK to die dry.
(13:02):
Well, I think people assume thattheir bodies are feeling the
same as a healthy body. So like, if I'm dying of thirst,
that's uncomfortable and I don'twant my loved one to be
uncomfortable. So they've got to be starving.
We've got to give them some foodor some water.
Is is, is their body handling itdifferently?
(13:23):
They're not feeling what a healthy body would feel.
The body's a beautiful thing when we I talk about, we labor
when we're going coming into this world, we labor when we're
going out. Our body knows what to do.
So when you're born, you don't just start off with a steak and
eggs, you start off with breast milk and formula.
Then you graduate to cereals, tofinger foods, to hearty foods.
(13:46):
You kind of go in the opposite direction at end of life.
And that dehydrations that people experience at end of life
actually kicks off some hormonesin our bodies to help with paint
and aid in and with those types of end of life discomforts and
our digestive system slows down so that foods and, and hydration
(14:09):
sometimes doesn't have anywhere to go.
So we always talk about risk andbenefits of everything.
I mean, sometimes, I mean, I've had a patient who had a Big Mac
and, and A and a shake before they died.
I've had patients who've gone three weeks without any food or
anything. So again, it's just very unique
(14:29):
to the person and individual. So there's a lot of mess about
Hospice. I'd love to know, like what it
actually looks like. I've read a lot about it because
of what's happening with my mom.Mother will probably be the one
with the McDonald's because she made me go get her one while I
was there and just stuff like that.
Like what you look for. Like what would I, how would I
(14:49):
know that it's actually in the process of let's just say it
happens while she's at this facility.
Like how would I know? You may see changes in the color
of skin, you may see an individual who has very drastic
temperature changes. You may hear that that rattle
(15:12):
respiratory issues that come up.Our body's really laboring.
So sometimes it's it that you don't have any of these things.
Sometimes individual can have all types of complications.
So it it really does look different from each individual.
(15:32):
But that's the beauty of Hospice.
We're there to kind of explain and guide the family what's
normal and what's not normal people.
The one big thing is people think that Hospice is going to
come in and they're going to be there 24 hours a day, seven days
a week, right with you in your home.
And the reality is most of our patients are on routine level of
(15:56):
care where we're making intermittent visits.
And caregiving is not covered byMedicare or most insurances.
Long term care insurance covers some caregiving expenses.
But the sad part in our nation is that it falls on the
families. So it's something that we don't
(16:18):
discuss or the cost of caregiving to hire private
caregivers to come in to assist with the day-to-day care.
We call that activities of dailyliving in our in our little
world here, the bathing, the grooming, the changing, who's
going to be there to shoulder the responsibility of taking
care of this loved one. And that's something that people
(16:41):
assume it's it's Hospice is going to come in or Hospice is a
place you go. Hospice is a service that that
comes to you now state to state.There are Hospice houses in
some, in some places, California.
We have a Hospice House here in Orange County, but it is, it's,
(17:02):
it's a daily rate that people have to pay to, to live there.
My grandmother was, was that a regular facility, which is
probably what my mother would be, and then that they would
bring in Hospice. So that's why I was asking like,
how would they know? Yeah, the medical team has to
has to say, look, there's no, I think that's what you were
saying earlier, right, Arnetta, that y'all need to educate the
(17:24):
medical team and make them understand.
Look, when you think there's nothing more that you can do,
that's when you suggest Hospice,like the doctors typically
suggest it. I would always advocate.
Unfortunately, 85% of healthcareprofessionals are uncomfortable
(17:46):
talking about death and dying. I I run into that all the time.
You have to be an advocate for yourself and your loved one.
It's sitting down with your teamand saying this is my goal.
Or if you have cancer with your oncologist.
I'm, I'm in the fight. But at this point, I, I, I I
(18:09):
just don't want any other treatment options.
I want to explore something else.
It's a shift going from yeah. My friend's father did that,
Yeah. He just said he he was in the
hospital. They were doing all this stuff.
They were about to transport himto another hospital and he said
I'm done. I don't, I don't want to do any
of this. I just want to live out the rest
(18:30):
of my days at home watching TV and hanging out.
And that's when Hospice was called.
So yeah, it's a hard thing to tobe able to recognize that your
loved one. I mean, we don't want to say
goodbye so. We don't and it's hard and and
you have to listen to your lovedones.
(18:53):
I, I just sit there sometimes and listen.
And when, when I hear an individual say I'm tired, I
don't want to do this anymore. I don't want to go to the
hospital. I, I just want comfort.
Those are key indicators of thatshift and that transition.
(19:14):
And it's so hard because I see so many patients going through
so many unnecessary treatments because their loved ones don't
want to let him go. Right.
Well, and with Lacey, her motheris in memory care, so and she's
nonverbal now, right? She doesn't talk much.
(19:34):
She's still eating really well so I always thought that was an
indicator that she was still doing OK.
But from what I'm hearing from you, someone can eat a Big Mac
and then the next day they're gone.
But she sleeps an inordinate amount of hours.
Most hours she's asleep, she's awake.
Probably 4A day if. We start to see an individual
that's sleeping more, they're withdrawing, they're it's, it's
(19:56):
we have to be brave enough to say.
Can we talk? Have that cost this
conversation? And that's all it is in the
beginning, just a conversation. It's not like you say the word
Hospice and people come running in and grab your loved one and
take them to your house, you know?
I mean, it is a conversation. Talking about this earlier, we
all should have an advance directive.
(20:18):
We should all talk about what wewould want at end of life.
And it's the biggest gift you can give to your loved one is
filling out that advance directive.
Do you want aggressive treatment?
What do you, what does that looklike if you're in an accident?
What type of life saving measures do you want?
(20:39):
Because having those things memorialized, anybody over 18, I
say, should have an advance directive in the state of
California. We have the pulse form for our
patients who we suspect have a year or less and it's a
physician order for life sustaining treatment and it
talks about your code status. Do you want CPR or do you not
(20:59):
want CPR? Do you want comfort treatment or
full treatment? Do you want a feeding tube or
not a do you or opt not to have a feeding tube?
So these are all conversations that we should start having when
we're healthy. But part of the conversation, it
sounds like I mean, and Lacey, I'm sorry, we keep using your
(21:23):
mom as an example, but she is sleeping all the time, but she's
eating. I mean, like what, what
advanced, you know, what communication could you have had
with her before this? What are those questions?
If you're sleeping 20 out of the24 hours a day, what do you want
us to do? Like because there's.
Nothing they can do in terms of.There's nothing to dial down.
(21:47):
There's nothing to She's still breathing, she's still sleeping,
she's still eating and she doesn't move.
They're they're taking care of all her basic needs now.
She's not walking, she's not doing any of that anymore, but
there's nothing to take off. She has a pacemaker, but other
than that I don't. Know just start to we it's it's
(22:07):
our job to demonstrate that a patient when when we do our
evaluation, we're taking the whole medical history into into
view. So you don't.
So what I'm hearing is you partner with the family or the
patient. We don't have to have all the
answers and know everything whenwe go in.
We just say, hey, we'd like to have this conversation.
(22:31):
And then we're. Yeah.
And then the evaluation when we're pulling all of those
medical records, when we're kindof demonstrating that a patient
is appropriate because there's gonna there's gonna be a shift,
there's gonna be something that happens.
It's either an infection or a crisis situation that is
(22:53):
emphasis to Hospice care when weshould be having a conversation
right now. There's signs she's sleeping 20
hours a day. She's more dependent on her care
needs. These are things that you should
start having a conversation withher specialist, with her doctor
(23:13):
and saying, can we open up the conversation?
Can we talk to Hospice? Can I get an evaluation to see
where my mom is? Because knowledge is power.
If if a patient is appropriate for Hospice, getting that
support in walking alongside. Because the the reality is
Hospice is more for the family than it is for the patient.
(23:33):
Because the family is getting that support, they're getting
that emotional support, they're getting their affairs in order.
And you brought up an excellent point that I want to get back
to. People tend to think that
Hospice means you have a Hospiceperson in your home 24/7 to
handle all of that person's needs.
(23:54):
That is not true. Sometimes you're seeing the
Hospice person once a week. They're always available and you
can call them, but you are your family is is responsible for.
If that person can't walk, you have to have somebody that can
get them to the bathroom if theyhave medications that need to be
(24:14):
administered or you know, or daily things like brushing their
teeth and bathing and all of that.
There's not a person from Hospice in your home 24/7.
You have to pay extra for that. So I assume you can bring in
Hospice to like the memory care facility, correct?
You can't we go anywhere a patient calls home.
(24:35):
But it's great to know that if, for example, your mother, she's
in a facility already where she's provided all that care,
but now you want Hospice, that'sthat's a possibility.
And she doesn't have to leave that facility.
She's just getting extra care there's.
So many opportunities that you have with with really leaning
(24:58):
into the Hospice as a whole. Studies show that just the
impact that we make in the quality of life.
You know, there are other services we talk about.
A lot of people mistake palliative for Hospice care.
I would say palliative care is for those people with serious
(25:20):
illnesses and they are still seeking treatment.
They have their their care team,all those specialists that they
see their primary care doctor and they still want to engage in
their care. And it could be what that looks
like for a young patient who hascancer, young mom, maybe she's
her pain isn't managed. So that palliative team is that
(25:41):
support that wraps around her totalk about how how they're going
to manage her pain or it's a social worker coming in to talk
to her children on navigating the disease and what that looks
like for them. And that young mom with cancer
can go and live a full life and,you know, be on palliative care
for, you know, five years versusanother patient who has maybe
(26:06):
90, doesn't want any aggressive treatment, has cancer and now is
looking at her options. Not ready for Hospice, but still
exploring, You know what her options are.
She has a care team, a palliative team that can come
and talk about goals of care. And that could be a bridge to
(26:27):
Hospice. But the misconception that
palliative care is Hospice or palliative means that you're
dying. That's not the care.
It's just I have a serious illness and I need a little more
help. And the palliative team is
really that compass that helps you navigate and there's a lot
of palliative programs throughout the nation.
(26:49):
It's just finding access to thatpalliative program versus
Hospice is really you're transitioning, it's you're you
want that comfort, you want thatsupport and you don't want any
curative needs. As far as support from Hospice
are you getting, is it the same if you're in a home, If you're,
(27:12):
you know, have an illness or dying in your home versus in a
facility or a hospital? OK.
So with the the only difference,there's 4 levels of care that
are built into the Hospice program.
First level of care one, one of the levels of care is routine
Hospice. Most of the people around that
(27:34):
where we're making intermittent visits, the core team doesn't
change. You have your physician, you
have your bath aid, you have your social worker, you have
your chaplain, volunteers, bereavement coordinator, That
core team, no matter where you are, that is your team.
Your supplies, equipment, medication, all paid for.
The levels of care are a little different.
So if you're at home, we're looking at 4 levels of care.
(27:55):
At the routine level of care, like I mentioned every we're
making intermittent visits, thenyou have continuous care.
So if you we get a call in the middle of the night, some things
we can handle over the phone, some things we can't.
We have to send out a nurse. That nurse got there, you're
having respiratory distress, pain out of control, it's not
managed. We may put our our patients on
(28:18):
what we call continuous care where there we deploy a nurse
that is their bedside to really do hands on care and then we re
evaluate that and if the patientis stable, we go back to
intermittent visits. If not, we continue that.
If there's a situation where we can't control the symptom where
(28:39):
the individual is, there is general inpatient level of care
for those individuals that are in a crisis situation, we can't
control the symptoms at home. Again, we're re evaluating that
and we do discharge a patient back to wherever their living
situation was if they can. If not, they do.
You end up dying in that generalinpatient unit.
(29:01):
The patient is at home. We do look at respite.
There are five consecutive days of respite.
Those are the level of care. Remind me what's?
Respite what's respite stand forRespite care is a.
Is five consecutive days of respite.
So we always are looking at the caregiver.
Do they have burnout? Medicare does have a carve out
(29:21):
called respite care where we find a skilled nursing facility
so that the patient can go and give that caregiver a little
rest. It's a tough, tough job.
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on every widow thing. And now, back to the show.
(30:24):
Does Hospice ever say no? Do you ever go in and you're
like, oh man, this is 108 year old man trying to take care of
106 year old woman? I have that a lot.
That's the scenario. We don't want to say no to
anybody. We want to help.
We're in the business of helping.
So it's sometimes getting in there and figuring out what
(30:44):
resources do we have and unfortunately the resources are
limited. This is there is a financial
impact to people with serious illnesses and the care that is
required. And I think that's something
that's not discussed. We're not talking about it
enough because it is assisted living.
You have a monthly bill every month that you have to pay for
(31:07):
that care. You said that Hospice typically
is covered by insurance, but arethere?
Does it depend on your insuranceas far as deductibles and things
like that or is it free? Like what's the?
Story there, I always say that it's a good that book that you
just get in the get once a year that goes over all of your
benefits and usually just stick it in the trash or on the desk
(31:29):
or buried away somewhere. You always want to make sure
that you pull that out that you call.
If you're thinking about Hospice, good idea to call your
insurance provider and saying, do I have a deductible?
What is what percentage is covered?
Most of the time I find that Hospice is pretty well covered.
(31:49):
I mean, I'm occasionally it's of80, twenty, 80% covered, 20% out
of pocket with private insurances.
Medicare covers it at 100% and you could find your Hospice
benefit on medicare.gov and search Hospice benefit.
It's right there, but it's a good idea if you're thinking
(32:10):
about Hospice to call and know your benefit, know what to
expect. Can you tell us what it looks
like on the last day of Hospice?I always say death is a social
event, it's not a medical intervention unless you have
complications. So what it looks like there
(32:33):
again varies. It could be very peaceful where
the patient is just they they have breathing changes.
Sometimes there are complications with the end of
life experience where they may be experiencing respiratory
distress and the Hospice team isthere to control that.
If we know a patient is transitioning, we send our our
(32:57):
our team in for daily visits. So we're touching base every day
to make sure that a patient's supported and sometimes that's
not just a nurse that may be, that may be our social worker
for emotional support, that may be our chaplain for spiritual
support. So it looks different and.
After the body. After.
(33:18):
After the person passes away. Hospice.
You call Hospice, you call Hospice and we call the Mortuary
and depending, some people want a little more time with their
loved ones. So we coordinate with the
Mortuary, but we call the Mortuary.
That's a, that's another benefitof Hospice.
If you die at home without Hospice, you do have to call
(33:39):
911. If you die with Hospice, you
call the Hospice team. OK.
Now why would you call one one? Because.
Someone died because they have. To, well, somebody.
That they're dead. They have to, yeah.
Sometimes the coroner has to be involved with Hospice.
It's just calling the Hospice and we coordinate the Mortuary.
(34:02):
What do we need to look for in Hospice care?
Because. It's, it's, it's you.
I always say interview just likeyou would if you were, if you
had a serious illness. These are, these are the most
important people. They're coming into your home or
wherever you call home. They're you're giving you're,
you're allowing them to provide care for your most precious
(34:22):
possession of your loved one or yourself.
It's always asking, are you going to have a consistent team?
I always say, can I talk to another patient or family that
you've serviced at word of mouth, asking friends, family,
even your physician. I mean, my mom never talked
(34:43):
about death and dying. She would always say, Arnana,
stop talking about what you do. Nobody wants to, nobody wants to
be depressed. But but when she really embraced
it, I took, she went to one of my community events and we had
this gentleman called. His name is BJ Miller.
He's a palliative care doctor. And he was talking about how at
(35:04):
his Hospice House in San Francisco, they sprinkle rose
petals on each of the people that die before they go to
March. Where my mom just got this idea
and she says, Arnette, OK, we need to plan out what I want.
And she did. She said, when I'm
transitioning, I want you to order flowers every three days.
(35:26):
So there's roses there for everybody to sprinkle.
And I would have never guessed. And she planned her whole
funeral, too. And it was a surprise to me
because she had a, she had dovesthat she wanted us to release.
And she knows I hate birds. I hate birds.
But it was beautiful because shegot to do that.
(35:47):
And so it's just finding, finding you have to connect with
that person. I mean, anybody can come in and
tell you what they're going to do, but you have to really trust
in the team that's going to provide and walk alongside you.
So I just say interview 3 hospices, make sure that they
(36:08):
have a dedicated to dedicated teams to eat, meet each level of
care and their their response time.
And how do they support that? Because when you have an
emergency, you need, you need toknow that your team's there.
All good things. I'm, I'm sitting here and I'm
like, OK, I'm not too young to sit down and write out like
(36:32):
things like I want some rose petals on my face.
You know, when I I want them to play some Duran Duran music
while I'm transitioning and. I teased those are.
Their things. Yes, it is my mother.
Before she was not before she was in the facility.
They have everything all writtenout.
The two of them do. And I said look at you still
(36:54):
controlling things even after your die.
It's kind of relieves you of thestress of wondering.
We have to change our thoughts about death and dying because
everyone's going to do it and there's so much fear around it
and so much secrecy and silence.This is the most this is the
biggest event of your life. Why shouldn't you plan and
celebrate that? Again, there is sudden death,
(37:18):
there's gradual death. But as hard as this work is, I
do find beauty in in this time in one's life.
I see beautiful things happen. Funny story.
I had a lady who was the bury ofHospice.
She didn't want to go on Hospiceand her daughter was like, what
mom, why? Why do you want to go back to
(37:39):
the the hospital? And she's like, it's the best
time I have all of these great. When I call 911, the
firefighters come in and they'renice, good looking.
And then I go to the hospital and you get to see these good
looking doctors. And, you know, when I'm at home,
I only have the caregiver in this small space.
And if I, if I go on Hospice, I can't go to the hospital and the
(38:02):
fire department's not going to the firefighters aren't going to
come. So I says, what do you want?
And she goes, I want, I want, I want a hot guy that.
Is hysterical. And I, and I always think I was
like, OK, you know, I, I just say the worst.
I'll, I'll try to make it happen.
I can't promise it. So a big part of what I did
(38:23):
touch on is our volunteers. So there are a certain number of
hours that we have to have in Hospice provided by volunteers.
So I found. A volunteer, a guy.
He was an actor, did like theater, and he would come and
visit her once a week. And.
(38:47):
So much joy. And then you lose a lot with
some of the treatments. And we, we had a patient and she
lost all of her hair, her eyebrows.
And she's like Arnott. I just want some, some eyebrows.
So the foundation was able to give her some eyebrows, some
tattoo eyebrows. And so you just, you see, you
(39:12):
know, family members. We, I had another patient who
hadn't seen his brother in 30 years because he just couldn't
afford to make the trip to California.
So, you know, having the foundation support to get his
ticket to come so he could see his brother.
What's the name of the foundation?
Arnetta because you can donate to the foundation and then they
(39:34):
are able to provide these kind of make a wish.
List. Yeah, we.
Just changed it to living and dying.
Pacific Palliative and Hospice Foundation.
So was a mouthful. That is a mouthful.
I was having a hard time with just saying palliative.
Palliative. Yeah.
So we we really, we really wanted to focus on Hospice is
(39:59):
about living. So living in dying foundation.
So I like to. Know that I could have a hot guy
at the very end. I may not have him now, but I
could have him at the very end. I.
I'm really curious now because can you share some other like
interesting last wishes or whatever or I need some ideas.
(40:21):
We had this one woman I just because I, I get invited into
these conversations and she justhad this beautiful conversation
with their daughter and she had,and it's where I got my my
funeral playlist idea. She had a list of everything
that she wanted playing when shewas actively dying and then on
(40:43):
her at her funeral playlist. Sometimes people, you know, want
it very private. They want to be alone and
sometimes that just happens. Sometimes people are they have
their loved one that sits right next to them.
They go to the bathroom and thentheir loved one dies.
Well, I just think that's protection.
They wanted to protect their loved one.
(41:05):
Just hear one more one in mind because we have medical aid and
dying in California, it's not recognized where patients could
actually take medications to in their life.
It's you talk about those ethical dilemmas and everything,
but it is legal here. So I did have a patient who
said, like Arnetta, I just want to have a date with you.
(41:26):
And I was like. No.
And he? Just said, OK, so I called my my
fiance and I was like, I'm breaking up with you for about
an hour. But he just he wanted to say the
Danishes and he just wanted to share about, you know, life and
how you should enjoy it. And it it was a great
conversation with his sister, both of the sisters.
(41:49):
So it was. Some of those conversations for
just mean the world to me. Share with our audience some
things that you know for sure, as Oprah likes to say.
Just enjoy life, don't sweat thesmall stuff and really you get
an opportunity knowing that I know for sure one day I don't
(42:11):
know when I'm going to die. We all are.
We should really go out and and articulate and get uncomfortable
talking about this part of our life and when we do that we get
a better end of life experience.Like a plan, a birthing plan.
(42:33):
I never did, but you know, lots of people did.
I'm not that big of a planner, but I'm going to plan my I'm
going to plan for my death. I I love that you want to create
your own environment. How?
You don't have to go. You can go on your own terms I
guess is what I'm saying. You've also made me realize that
about that your child should have that.
I didn't even think about that. He has like certain things done,
(42:56):
but there are certain things that we still have never talked
about. The reality is if you have if
you have an 18 year old or aboveyou, they should have an advance
directive. But it can be very much more
specific. You know, it sounds like you you
really need to say a deeper. Conversation.
A deeper conversation about exactly what?
(43:18):
But I think immediately my 18 year old would say some stupid
stuff, so I don't really want toknow what he 'cause he'll change
his mind, you know, like an 18 year old's idea is gonna be very
different. Yeah, they they.
You're going to have to have a conversation every year.
You do, and that's what I say. Every year, pull out your
advance directive and update it.Yeah, I'm sure we can go online
(43:39):
and find some really like deeperquestions, not just a form, but
like really go deep into what you should be thinking about or
considering. Yeah, there's a great form
called 5 Wishes. It's a great advance directive
tool, but there are so many out there.
All right. You, you mentioned about
volunteers, I would love to know.
(44:02):
I'm assuming because this is themedical field in general.
I think they're in dire need of more people.
So our volunteers, I even think I almost recruited you one time,
Whitney, you played the ukulele so you were willing to come.
I had a patient who wanted somebody that knew how to play
the ukulele. Yeah, they apparently wanted
(44:23):
someone that was barely good enough to play ukulele for them.
Play them out. I'm learning a lot today.
Well. We we have a lot of people out
there with a lot of gifts and talents.
So it's not just medical professionals, but we have
people that we have a choir thatvolunteers their time to sing to
(44:45):
our patients. We have people with music
talents, people who like just toread with our patients.
We have a lot of students that that volunteer, they were going
into social work or nursing. So it takes everybody has the
special gift. And if you have the gift to give
(45:06):
to others at end of life, then Iwould always recommend
contacting your local Hospice. We're always looking for
volunteers. Well, I'm excited now to plan
all my death wishes and my playlist and it just, it changes
your perspective on the whole experience because it is an
experience and it's the last experience.
(45:28):
So let's make it really fucking awesome.
And you have to make your photo.You have to put your photos that
you want shown at your. Oh, I'm sure Arnetta, you
probably have already thought ofthis.
You have to make a folder with all the photos that you want
shown at your memorial or funeral.
You don't want the wrong ones. I will share that at my on my
(45:50):
50th birthday, I gave out cards to everybody in a nice PIN and I
said, OK, I want you to write down what you will say, what you
would say at my funeral. And I'm going to put it in a box
and I'm going to have that read.Oh, you didn't read them?
I might put them in a box for your piece.
We can't make it. Right, well, I would be reading
(46:12):
every single one of those beforeI put them in the box.
I might be scared. I'm so grateful that you took
time out of your busy day to share with us.
And I'm, I have to say, it's weird, but I'm a little excited
about thinking of all the fun things I'm gonna do and make my
(46:32):
family do for me. She's gonna be working on her
playlist. I'm gonna start my playlist.
Yeah, my pictures, hot firemen, all of those things.
So thank you, Arnetta. We love you.
I appreciate your time. Really admire what you do.
I do too. That's it's that cannot be an
easy job. No day in and day out.
So. Hard.
(46:53):
So that's really your special. Well, thank you and it's and it
is a blessing to take care of these individuals.
They give me more than I probably give them, so thank you
for having me. Today, Pearl, do you mean the
side eye? Pearl, do you want a bone?
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