September 8, 2025 • 55 mins
Betsy Wurzel’s guest today is Dr. Marc Sapir, author of I’ll Fly Away: Stories of Disabled Elders. In this inspiring interview, Dr. Sapir shares why he gave his book the title I’ll Fly Away, drawn from the 1929 song about freedom. He explains how the theme of freedom connects deeply with the lives of elderly and disabled individuals—social beings who deserve respect, autonomy, and dignity.
During their conversation, Betsy and Dr. Sapir explored the PACE model program for elderly and disabled individuals, which recognizes them as cultural beings who should be supported in living meaningful lives. They discussed how music plays a vital role in bringing joy, connection, and healing, and why being socially active is essential for well-being.Another important topic they covered was end-of-life care.
Dr. Sapir stressed how crucial it is to make your wishes known through a medical directive, ensuring that family or friends honor those decisions—even if they might disagree. He emphasized that, for many people, quality of life matters more than quantity.Dr. Sapir also shared stories of individuals featured in I’ll Fly Away: Stories of Disabled Elders, reflecting on the lessons he has learned from his experiences.
He spoke about how aging often brings physical and mental challenges, but reminded us that we must always treat the elderly with respect and dignity.The interview also touched on how healthcare systems can better support the aging population by recognizing their unique needs and providing programs that nurture independence and self-worth.
About Dr. Marc SapirDr. Marc Sapir is a retired primary care, geriatric, and public health physician. He is also an essayist, playwright, fiction writer, poet, musician, and political activist. Dr. Sapir was the first Medical Director of the Center for Elders’ Independence, serving disabled elders for nine years. He also previously worked with the United Farm Workers and was a panel member of the Mad as Hell Doctors for Single Payer Health Care.A graduate of Brandeis University and Stanford Medical School, Dr. Sapir also holds a Master’s Degree in Public Health Epidemiology from the University of California, Berkeley
.Betsy’s RecommendationBetsy Wurzel highly recommends I’ll Fly Away: Stories of Disabled Elders. She believes it should be read by everyone, especially those working with disabled and elderly populations, as it provides invaluable insight into respect, care, and dignity.
Become a supporter of this podcast: https://www.spreaker.com/podcast/chatting-with-betsy--4211847/support.
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During their conversation, Betsy and Dr. Sapir explored the PACE model program for elderly and disabled individuals, which recognizes them as cultural beings who should be supported in living meaningful lives. They discussed how music plays a vital role in bringing joy, connection, and healing, and why being socially active is essential for well-being.Another important topic they covered was end-of-life care.
Dr. Sapir stressed how crucial it is to make your wishes known through a medical directive, ensuring that family or friends honor those decisions—even if they might disagree. He emphasized that, for many people, quality of life matters more than quantity.Dr. Sapir also shared stories of individuals featured in I’ll Fly Away: Stories of Disabled Elders, reflecting on the lessons he has learned from his experiences.
He spoke about how aging often brings physical and mental challenges, but reminded us that we must always treat the elderly with respect and dignity.The interview also touched on how healthcare systems can better support the aging population by recognizing their unique needs and providing programs that nurture independence and self-worth.
About Dr. Marc SapirDr. Marc Sapir is a retired primary care, geriatric, and public health physician. He is also an essayist, playwright, fiction writer, poet, musician, and political activist. Dr. Sapir was the first Medical Director of the Center for Elders’ Independence, serving disabled elders for nine years. He also previously worked with the United Farm Workers and was a panel member of the Mad as Hell Doctors for Single Payer Health Care.A graduate of Brandeis University and Stanford Medical School, Dr. Sapir also holds a Master’s Degree in Public Health Epidemiology from the University of California, Berkeley
.Betsy’s RecommendationBetsy Wurzel highly recommends I’ll Fly Away: Stories of Disabled Elders. She believes it should be read by everyone, especially those working with disabled and elderly populations, as it provides invaluable insight into respect, care, and dignity.
- Visit Dr. Sapir’s website: http://marcsapir.net
- Explore the National PACE Association programs: https://www.npaonline.org/
- Email Dr. Sapir: marcsapir@gmail.com
- Purchase the book on Bookshop.org: Buy Here
Become a supporter of this podcast: https://www.spreaker.com/podcast/chatting-with-betsy--4211847/support.
🎙 Passionate World Talk Radio Network LLC — Where real conversations matter.
📧 Contact us: pwrtalknetwork@gmail.com
🌐 Visit: www.passionateworldtalkradio.com
📲 Follow & share with #PWTRN
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hello, everyone, this is It's the Worsal. You're a host
of Chatting with Betsy un Patsion World Talk Radio Network,
a subsidiary of Global Media Network LLC our mantrs to educate, enlighten,
and entertain. The views of the guests may not represent
those of the hosts of the station. Folks. Before I
(00:22):
introduce my guest today, I want to do two public
service announcements. One is September is World Alzheimer's Awareness Months,
and if you have any concerns about your memory, please
consult your primary care physician. And September is also Suicide
(00:42):
Prevention Months. Do you have any mental health concerns struggles,
please consult your primary care physicians for referrals in your area.
And if you are in crisis, please call the hotline
nine to eight eight and I'm going to tell you
about my guest today. My guest today is doctor Mark
(01:05):
M A R C steperg SAPI R. He is a
retired primary care geriatric public health physician, is an essayist
and political activist. He was the first medical director of
the Center for Elders Independents for Disabled Elders for nine years.
(01:26):
He also previously worked for United farm Workers and was
a panel member of the MEDS held Doctors for Single
Payer Healthcare. A graduate at Brandess University in Stanford Medical School,
he also holds a master's degree in public health from
the University of California at Berkeley. He is the author
(01:49):
of five plays and writes fiction, poetry, and music. Very
talented writer, author. And I want to welcome doctor Mark
Say birthday, Jiva, Betsy.
Speaker 2 (02:06):
Welcome, Dr d thank you, thank you so much for
inviting me to talk with you.
Speaker 1 (02:12):
Oh, you're welcome in my pleasure. I had to ask
because I love a song, I'll Fly Away, one of
my favorite songs. How did you pick that title? I'll
start with that.
Speaker 2 (02:28):
Yes, well, you know the stories are based in a
program of all inclusive care for disabled elders known as PACE,
and I was the medical director for nine years there.
It's the one that we have here in the San
(02:49):
Francisco Bay area known as the Center for Elders Independence.
And so I began writing stories while I was doing
that about many of the participants who I got to
know very well. And in deciding on what the title
(03:10):
of the book, I initially had a different title called
in Concert, but I switched over to I'll Fly Away
because of how much I was impressed by the music
and the social content that took place in the adult
(03:31):
day health centers that we had, and that the participants
took such joy in. And there was a lot of
gospel music, in fact that a gospel choir, and one
of the stories is about the formation of the gospel
choir and an acting group that we had at Center
for Elder's Independence. And so I was aware of this
(03:52):
gospel song both from attending certain funerals and church services
with some of my patients participants, although I was poorn
up Jewish, and also from the fact that it was
(04:14):
in the film Oh Brother, where Art Thu was a
very extensive musical background film, and and I used it
for that reason, but because of the concept of approaching
death and flying away. It turned out it wasn't until
(04:36):
after I had actually written the book that I found
out that the book, the story the Excuse Me, the
song I'll Fly Away was written by a young man
who was the the son. He was a white fellow
in the in back in Indiana, I believe, the son
(04:57):
of a cotton former, and he picked cotton his youth
and at the same time he wrote a lot of
gospel songs. This song was taken from prisoners, not from
a religious environment, who were singing about their desire to
(05:19):
fly away from prison. But he changed it into a
gospel song that became widely sung in both African American
and in and in white churches in various Protestant denominations.
It's probably not quite as as prominent as Amazing Grace,
(05:43):
but it's a very prominent song, and I thought it
was very fitting for for the for the program that
I was working in, and it's a very powerful involvement
with the lives of its participants.
Speaker 1 (06:00):
Yes, I get into music before I forget to ask
this question of what motivated you to write your book
with the various stories of the individuals that you encountered
over the years.
Speaker 2 (06:20):
Well, as I say, it's a social program as well
as a medical program. In fact, the people who sponsored
who manage it, would like to highlight that it is
essentially deeply engaged with the social lives of the people
who joined this program. And so when I was early
(06:44):
on as the medical director there at CI, I decided
that I would like to begin a reading and reminiscences group.
We know that reminiscences and memoir writing is very helpful
for elderly people. And at this point, I'm an old
(07:06):
man of eighty four and this is my second more
actually myself, and it's extremely useful for elders. So I
started this reading and reminiscences group where we read short
excerpts from various authors. A couple, for example, were Toshio Mori,
(07:28):
a Japanese American well known out here in Oakland in
the forties nineteen forties, and lengthston Us, who was very
famous African American writer. And we would just read excerpts
from some of their works that I had chosen based
on the fact that I thought that they would evoke
(07:50):
memories in people's lives. And then we go around the
room and they were usually I don't know, six to
twelve or fifteen people in the room who they wanted
to be part of the reading group and a discussion
group from a day center where there might be fifty
people that day, and they would tell their stories. And
(08:12):
these stories were amazing, and they were such fun to
hear about people's lives, and you find a lot of
that in the book, a lot of those stories. And
so then I started writing essays based on this experience
that I was having with the reading and reminiscences group.
When I decided to retire when I got to the
(08:33):
age of sixty from this position, the manager, well, the
executive director of CEI, said to me, well, you're the
only one that's been here the whole time in this program.
I would like if you would write a history of
the program. And I said, well, I'm not really that
(08:54):
interested in writing the history of the program, but I'm
very interested in writing about some of the stories about
the participants in the program. He said, Okay, that'll be fine.
Just include some section on the administrative development of the program,
which I did, but I've taken that out of this book.
And this is just a book of the stories about
(09:14):
the people. And so that was its origins, and so
many of the stories got written after I left CI,
and then I've chosen from the many, I wrote a
selection that I thought would create a whole environment, a
(09:35):
sense of the environment's social environment of this community based
program that provided everything from physical therapy, occupational therapy, social
activities in the day center, clinical clinical care twenty four
hours seven twenty four to seven, including hospitalization, and you know,
(10:02):
all based on largely on Medicare and Medicaid funding, and
so that's where the idea came from and that's how
it evolved.
Speaker 1 (10:16):
Well, i'll tell you what. I read this book a
while back, so I don't remember everything is there. Read
a lot of books for my show.
Speaker 3 (10:24):
But in reading the book, Doctor s Acer, I was
envious that this program that you have is sounds so
wonderful that I was jealous because I wished it was
here where I lived for.
Speaker 1 (10:43):
My mother in law. My mother in law went to
adult daycare three times a week, two or three times
a week, but it was not anything like your program.
I was really I was thinking, Nan, I wish this
could be cloned and be everywhere. It sounds like wonderful.
Speaker 2 (11:06):
It is. It is. It is everywhere, Betsy, but it's
it's not super pervasive because it's it's only for disabled folks,
So it's you have to be elderly, but you also
have to be disabled. And that's why the Medicare and
(11:29):
Medicaid can provide a lot of money for for the
services that it provides, because these folks are all eligible
to be in nursing homes and there are people that
would rather live in the community and continue to have
a good social life and lives with their families and
so forth, and so this program enables them to do that.
(11:53):
But it is everywhere. There are I think about one
hundred programs across the country. I'm sure there are some
the New York area. But unfortunately, it's not a program
that that that can be funded for just people who
are elderly, because that's not the way our healthcare system
(12:17):
is working as a full profit healthcare system, and you
don't often find programs as comprehensive as that are not
based on trying to make money off of the health
and well being or a disease of people.
Speaker 1 (12:35):
That's true. How does someone find out if there is
a program like that in their area? What would they
look up? Doctor Saber?
Speaker 2 (12:43):
Yeah, well, well, there is a national Pace Association. The
various the various programs are not necessarily affiliated with each
other except through that they are doing exact same model.
It's written in law, and they all do the same thing.
They have adult day health centers. They have all these
(13:06):
services in the adult day's health centers, including all the
transportation and home care when people need it. And it's
so they're run by teams of health professionals, but they
will also include on the teams the people from the
who work in an adult day health center, or work
(13:26):
in people's homes, or even a driver of a van
or the lead driver or some driver may be part
of the team that meets several times a week to
talk about what's going on with their charges. And so
it's a very capable, powerful medical program that can do
(13:47):
early interventions. They can see. We can see people in
this model five or six times a week when they're
just very sick or just coming out of the hospital.
If we need to so they've planned, their airplant can
be changed on a dime, and they can be seen
very often, which is very It's unheard of in the
(14:08):
American health care system. In fact, there's a lot of
forces trying to restrict the number of times people can
be seen. This model doesn't view that as a as
a good way to do healthcare at all. We think
the more you see a person, the more you know
about what's happening with them, and the cent you're sensitive
(14:28):
to changes in how their environment or their lives are going.
And that includes social aspects in their lives as well
as medical.
Speaker 1 (14:40):
That's very true. I feel bad. And what I really liked.
One of the many things I liked was your personal
relationship with the participants. You were really involved, and I
think that's wonderful because don't see that now. You know,
(15:03):
doctors only have so many like maybe ten fifteen minutes
if you go into their office and they're pressed for time.
And I just think that the work that you have
done is really wonderful and I want to thank you,
doctor Staffer for what you have done in your community.
Speaker 2 (15:27):
Well, thank you, thank you for that. But I got
to say that it was a great learning experience for me.
I was I was both learning and teaching at the
same time, and doing medicine and enjoying the social interactions
with these folks. They are a lot, to say, a
lot of creative energy. There. There are people, you know,
(15:53):
creating all kinds of interesting things. And that's why I
mentioned the theater group that evolved that of our program,
and what they call the Heavenly Choir that was singing
gospel music, and so there were there were many aspects
of the program that were very enriching for me personally.
(16:15):
So on the one hand, I feel like I was contributing.
But on the other hand, I was getting back so much,
and that's hopefully something that you can sense in the
in the in the pub in some of these stories.
Speaker 4 (16:29):
I mean, I learned so much from people, and now
about you know, I learned, I learned I was not
when I started. I was a primary care doc, family
primary care doc. When I started doing this, I'd been
at fifteen years doing medicine in community clinics and in
(16:49):
health departments and so forth, and so I was not
a geriatrician per se. So I had to learn geriatrics
on the job, and it is a specialty with particular
nuances that are not necessarily part of general training.
Speaker 2 (17:08):
But a lot of what I learned was from the participants,
these elves, the people that I was taken care of,
you know, approaches to issues like dealing with complex family
problems or with death and dying, and there's just so
much that was enriching or as I say, these stories
(17:32):
about people's lives. I wish I could tell some of
the stories here, but you know, the very first stories
about a woman who she just didn't want intervention, or
when she even when she was had a diagnosis of cancer,
she wanted to be left alone. She was very religious,
(17:52):
and she was in her late eighties, and she felt
like her life had been wonderful. This is a woman
who was a great great grandmother many times over, and
she had a very loving family. And when when she
was dying, they took me into their family. And there
(18:12):
were so there were always ten fifteen people in the
hospital visiting her and so forth. And I mean, I
just and the amazing thing was even earlier on when
she wasn't sick, finding out that she was a woman
who came from Sheresport, Louisiana. And we were at a
picnic in the out of an island here called Alamita,
(18:39):
that that the that the agency had, and and I
brought my guitar and I was singing some songs and
asked if people have had any knowledge about an old
folk singer being dead now, but the very famous named
lud Billy and this woman she just piped So yeah,
(19:01):
I know him. He married his sister, married my brother,
and after he got out of prison, he used to
come and sit up on a porch and play, and
all the people family and all the community people come
over and it was some Elton. So this just came
out of no place. And this is an example of
the kind of things that just were so enriching for
(19:24):
everybody in the program, the other participants, but me, I
speak for myself, and so I mean it created an
identity out of someone who in most medical settings will
just appear to be, you know, a patient too, you
don't know that much about. And the stories are full
(19:45):
of stories like that, the couple that very in their
nineties who drove across the desert and their air conditioning
went out and all that, and what happened, and how
the other doctor was able to get them back home
without having the surgery that doctors out in Texas were
(20:09):
threatening he needed to have, and so forth. It's just
it's just it was a very enriching life for me there.
And the only reason I stopped doing it after almost
a decade was because it was getting harder for me
at sixty to keep up with the with the complexity
(20:29):
of it all, you know, because these were people who
were very disabled and needed a lot of medical care.
In plus they were administrative responsibilities in the managerial realms.
Speaker 1 (20:41):
I feel doctor Safer that that I did get in
reading your book, that you learned so much from the
patients that you were involved with. It was kind of
like to me a give and take. You know, you
gave the care and you took a knowledge away from
(21:04):
your patients. And I really like to stress. And I've
said this on my show many times before. We can
learn so much about a person if we take the
time to listen people that are elderly, they are history books.
(21:25):
I say, talk to them, learn from them because they
hold a lot of knowledge, experience and knowledge that we
need to know.
Speaker 2 (21:36):
Yeah, relationships tend, they tend to become pretty superficient unless
we do that.
Speaker 1 (21:47):
Yes, And I love that you had a music and
theater groups. And there's a lot to be said for music.
I haven't music therapists. It is scientifically been proven that
music helps those who have dementia. They will start singing
(22:11):
it almost like brings them back to life. They'll crap,
they'll move their feet if they can, and you could
just see their expression change. I know in my own
experience with caregiving, my husband had early on set Alzheimer's.
I would play his favorite music, especially if he was agitated,
(22:34):
to calm him down and to for him to eat
and then be able to give him a showers music
works wonders. It really does. You could just see the
difference absolutely.
Speaker 2 (22:49):
One of the stories, one of the stories in the
in the book, I named the woman almost but she
had dementia, quite advanced dementia, and yet she was a
fantastic singer in that in that music group. She never
(23:09):
forgot any of the songs, the gospel songs that she
had some when she was younger, and she had this
ethereal beautiful voice. It was it was almost miraculous to
hear somebody who when you conversed whe her, you could
tell that she was had lost a lot of her
(23:31):
cognitive ability and you didn't really remember where she was
or who you were and so forth. And to hear
her singing almost as if she were a professional performer.
It was such a beautiful voice.
Speaker 1 (23:48):
Yeah, it is incredible. My husband used to he would hum,
and I'm thinking he could hum a tune, and I
just found it incredible that part of the brain works
he remembers the tune, but he doesn't know how to
use a fork. It's really and lets you witness it,
(24:09):
you know, it's just really incredible. Time we went to
the dentist and I said to the hygienists. I said, listen,
just put it on Johnny Cash. Matt loves Johnny Cash,
and you shouldn't have a problem. So she put on
Johnny Cash and that did very well. And told you know,
I'm near the end of a little antsy, but music
(24:30):
really helps. I've seen the firsthand witness to it, so
I know that music does work. And I also one
of the many things that I did get from your
book is to respect the wishes of our parents, are grandparents.
(24:57):
You know, some people don't want prolonged a medical treatment.
They and that's their choice, and even though if we
may not agree with it, we should honor and respect it.
I just feel, you know, might get to be a
certain age. I'll be honest with you. Don't come to
(25:18):
I don't want treatment if I have if I have
a terminal disease and it's not going to help. I
want quality. I want quality of life doctor daper over quantity.
Speaker 2 (25:34):
And I always thought that's fantastic. Yeah, I think that's
the way. That's the way I look at it. Also
as a person who is elderly, and in the book
there's stories about the conflicts we had with This is
an interesting thing that happens. It's good to be talking
about this with you, Betsy, because a lot of times
(25:56):
people don't talk about end of life until there's already
some tragic crisis going on, at which point it becomes
kind of difficult because, for example, if you're the daughter
or son who's been caring for your mom, use that example,
through terrible disability and disease and doing all the care,
(26:18):
which can be very tedious, and actually we have with dementia,
we have caregivers that die before the people who have
dementia dying just from the stress of all the workload
and the emotional stress of it. But anyway, if you've
been doing that your whole life and no one has
(26:40):
ever talked to you with the person you've taken care of,
the parent you've taken care of, about their wishes, and
they haven't expressed their wishes to you in terms of
what kind of care they want, you may decide that
you want to let somebody decide that you should decide. Well,
they've given you the right to be their spokesperson. That's
(27:03):
the way, that's the right thing to do. But what
if they've already had the desire to not be overtreated
or to not be put on machines for when if
their heart stop, when their heart stops, and so forth.
If if that hasn't been talked about and decided with
(27:23):
the person and the caregiver recognizing that they have a
right to make these decisions, then either way, then then
then it can create a tremendous complex conflict towards the
end of life. And you don't want that. You want
(27:44):
people to be able to kind of smooth things out
and be able to handle these crises in a way
that they don't. Nobody gets all upset, you know, into
conflict over it. So there are stories like that in
the book, and that happened, and that's why we had
an ethics committee to help people discuss these things. But
(28:07):
in these programs, in the PACE model, they always ask
people when they joined the program, well, what would you
want to be done for you if you say, suddenly
have a heart attack and your heart stops. So that's asked,
do you want to be resuscitated? Do you want to
(28:27):
play on a machine? You're not? And it's also includes
things like feeding tubes, taking a tube through your stomach
that you will never be eating eating again. Well, if
it's if you lost the ability to swallow from a
small stroke. It could be reversible, but in many circumstances,
(28:48):
once somebody can no longer swallow, it's not reversible. And
so putting a feeding tube in the means that that's
permanent and they will never again taste food if they
can't swallow. Now, is that acceptable to stay alive? Is
that quality lofe acceptable? Well, so some people say yes,
I just want to stay alive, and other people will say, well, no,
(29:11):
I've had my good share of quality of life and
that's not the way I want to go out. So
these discussions are intrinsical within this model, even though on
the average people in the model might live four or five, six,
ten years for twenty years, even I when I left
(29:34):
Center for Elder's Independence, there were still people there that
joined when the program opened when I became the first
medical director, who were still alive, and that was nine
years later. So it's totally unpredictable. This is not a hospice.
People are not joining this program to die, even though
(29:57):
in general people will die in the program, because very
few people decide to sign out of it. They love
it so much.
Speaker 1 (30:06):
I feel doctor Sabra and I've been doing the show
almost six years, and I very pro active with talking
about end of life care dignity and end of life
and how doing your living well medical directive is actually
a gift to your family so they don't have to
(30:30):
make those decisions because you made it for them. It's
very important because you can't even stress that enough.
Speaker 2 (30:39):
Yes, I completely agree with you, but they may still
have to make difficult decisions, even if some of it
has been explicitly written out and spoken out and so forth.
But you might as well try and get as much
as much clarity on the views of the person who's
going to go through this advance so that so that
(31:02):
there's not so much conjecture. And it's my opinion because
I've been taking care of them and they owe it
to me to do what I say, and so forth
and so on. You know, it's like this is one
of the one of the stories is about a mistake
that I made where we did get the person. We
did get the person's wishes when they came in the program,
(31:22):
and we review them periodically if they go into hospital,
We review them when they go in, when they come out,
and so forth, to make sure that they haven't changed
their mind about something, which obviously there is their right
to do and and so what. But in this case,
I was early in the program. I was just you know,
(31:46):
was the first year myself as a medical director, and
when I got the healthcare issues which we put on
a you know, a form and so forth, I forgot
to send it home. We forgot to have it discussed
at a family intake meeting when when the person was
admitted to the program. And as a result, the young
(32:07):
the young daughter who was responsible all the care, she
felt that we were trying to compel her mother to
have these wishes. Well that wasn't true. It was their
mother's wishes. But she didn't want to let go of
her mom and so she had to brain somebody for it.
This was my mistake that we didn't have a discussion early,
(32:30):
because sometimes people get very upset when they find out
that their mother didn't want to be put on a
machine or or have a feeding tube or something else
some other interventions.
Speaker 1 (32:46):
Yes, I remember that story, and you know, I think
that you know, I know, doctors take the oath you
know to you know, of to do well by you
know people, you know, to prolonged life but I think
it comes to us a time where you know you
(33:11):
have to, as I guess as a physician, you go
over the pros and cons with the family of you
know about treatment. You know, is this treatment really going
to help prolong and get this person a quality of life?
And a lot of family members, as you know, doctor Seber,
(33:33):
because you've been a doctor for many, many years, they
don't want to let go. And folks, I'm a Jersey girl,
so I'm just gonna and I'm very blunket. But sometimes
you've got to let go, and it's not up to you,
it's what your loved one wants. Now. I had my
(33:53):
husband go as soon as he was diagnosed. We went
and we did our living wills. He did not want
to see eating too. And his last year of life
he lost a lot of weight, and the neurologist said, well,
you know, I'm macnepic eating to him And I said,
why why would I do that to him? Prolonged his
life for what? And by then he was very much
(34:17):
in progressing and I would not do that to him.
I honored his wish. Sometimes it's hard, it's difficult and
heartbreaking to see someone deteriorate and see someone die. But
I loved mad enough to let him go, and they
(34:37):
knew it was his time was starting to come to
his time acceptance. That's the thing I got to say.
Speaker 2 (34:44):
I think that's I think that shows how much you
loved him. Frankly, you know, that's the phrase you were
the mantra, the phrase that you were looking for. There
is what the doctors supposedly. But I mean it's not
anything in legal terms, but it's above all, do no harm.
(35:08):
But that's but do no harm. It doesn't mean that
that that people should be their lives should be long prolonged,
if they're if they're suffering is extreme, or if they
don't want to uh to suffer more. Doctors are just
supposed to avoid doing harm to people. And like you
(35:31):
said at the very beginning of the interview, it's about
quality of life. I mean, that's what we all want,
is quality of life. We want to stay alive, but
we want it to be a meaningful in a sense
that we're not just unremitting and and terrible, excruciating pain
(35:52):
or suffering of any kind. That's you know, that's if
it gets to the point we're the only way you
can survive is by being drugged all the time, so
where you to where you're not even aware of what's
going on around you. And then is that a quality
of life. Well, it's up to the individual to decide.
(36:13):
As a doctor, I just I have always been related
to the idea of doing what what the patient wants.
But I think it's also important for the doctor to
be realistic for people what the expectations are given whatever
they're facing, to tell them what you think is going on.
(36:34):
One thing I learned, like from that first story with
with the patient with cancer big more treatment the women
with advanced cancer is very severe, was that that you
can't predict death. And so it's even though I can
(36:55):
tell people what I know is happening to them, to
mean that I can say I know when you're going
to die, I don't. Doctors have an algorithm that supposedly
tells them if somebody has X number of weeks or
so so much to live, but it's not always right,
(37:18):
and so you don't want to just operate on that basis.
It makes much more sense to operate on the basis
of quality of life and what the patient and their
and their loved ones feels is the most meaningful thing
to do. But the person who's going through it is
always should be that, if they're cognitively able to, is
(37:41):
the person who should be allowed to have that autonomy.
And and that's what we got to respect. And in fact,
I'm going to put an answer the book in our
magazine pretty soon here and it's already been laid out,
and I put a title of respect Life is the
(38:01):
title of the ad for the book, and I mean,
I think that's that's why I wrote the book. I
think the book is about respecting life, as is this model,
this program of the program of all inclusive care for
the elderly. And as I said, people can see if
there's a program like that near them by going to
(38:22):
the National Pace Association website. But don't forget it's you've
got to be certifiable disabled enough that you would need
nursing home level of care, and this is a way
to avoid that. So it's just not about simply being
old and having you know, certain a few needs. It's
(38:47):
got to do with activities. A data living you can't perform,
and instrumental activity is a daily living you can't perform,
and so forth.
Speaker 1 (38:58):
I have to ask your doctor, Saber what can the
healthcare system that can they better support the needs of
the aging populations, because as you know, I mean, I'm
a baby boomer. I'm going to be sixty eight December,
and we baby boomers, I think we're going to change
(39:18):
how we want to live out the rest of our lives.
But how can the healthcare system better support us and
our aging?
Speaker 2 (39:31):
This is a lot of aging. This is an extremely
important question, but I gotta sadly say that it's not
a question that I can address in this interview. And
I mean, I will make a couple of comments, but
the reality is that the healthcare system is in a
(39:51):
lot of trouble, and to talk about what we ought
to do and how we can make things better is
it's almost, in a sense, the court before the horse,
because in my view, you know, we should have met
a care for all. You know, it's been languishing in
(40:14):
Congress for years and years and years. Bernie Sanders has
a great bill and Senate in Promila, Jayapaul in the House,
and they're not going to pass. We can't even assure
that people have the right to vote anymore. We can't
stop them from picking picking up people on the streets
(40:34):
who are not criminals and disappearing them and having masked people,
kidnap people and send them to foreign countries in prisons
when they haven't even had a chance to be before
a judge or to be charged with a crime. I mean, so,
how are we going to fix the healthcare system in
(40:55):
that environment? I don't think there's a whole lot that
we can do, frankly, until we fix a lot about
what's going on right now in this country. And unfortunately,
I also don't think that as much as I as
I have extremely strong feelings against a lot of things
(41:19):
that are going on in the country right now, I
don't think it's going to be solved by an election
or two. I do think people should vote, for sure,
and I work to help in elections in the over
many years and in the past. In fact, I was
in nineteen eighty three, before perhaps some of your listeners
(41:42):
were born, even I was the co leader of a
drive in San Jose, California here called Jobs with Peace,
which called for reducing the military budget in order to
provide better jobs in social services and programs to meet
people's needs. And it passed in San Jose. People said
(42:05):
it wouldn't pass because it's a military industrial area. But
it passed in the city overwhelmingly, with something like sixty
two percent or something like that. But the thing is,
at that time, these resolutions passed in a lot of
big cities, but it didn't mean anything. We don't have
(42:27):
a government that was responsive to that. And it's not
just a question of voting. I mean, there's a lot
wrong with how the structure of the system is, and
certainly in healthcare it's particularly bad because everything I mean,
even even though when I was in medical school and
(42:48):
so forth in the sixties, medicine was private and it
was small doctoral offices and small groups medical groups, but
they were autonomous and they had the right to make
a lot of decisions about how to care for people
and how much time to spend on them. And so
if we saw it, well, now most doctors are just
(43:09):
highly paid workers for hospital chains and insurance companies and
so forth and so on. They don't have the time.
I mean, like you said, you said fifteen minutes, but
some places doctors only have seven to ten twelve minutes
to spend with each patient, and most of that has
(43:30):
to be spent dealing with the computers and computer programs
and so forth, and so you know, I mean, you
might start. We could start by trying to get men
or care for everybody so that everybody would have coverage,
everybody could go to any doctor they wanted, and everybody
would be able to avoid waiting too long for symptoms
(43:53):
and diseases. As I said, Pace tries to see people
as many as often as it seems is appropriate, and
it's fine if the patient wants to be seen more often,
that's fine too. That's not where the cost in medical
care is from. The cost is in I mean, just
as an example, Medicare itself operates on a two percent overhead.
(44:17):
The administrative costs two percent. The private insurance for the
Medicare eligible people it's called Medicare advantage, that operates on
about a twenty percent cost overhead. But they get people
to switch. In some cases, they're now forcing people to switch.
They're forcing certain union contracts to accept switching people without
(44:38):
them even doing voluntarily to the private sector and therefore
losing that eighteen percent of the money that should be
going to care. And so these are the kinds of
problems that we face because we don't the public doesn't
really have control of the political system. It sure worse
(45:00):
because it's not even worse because they've figured out how
to blame you know, immigrants and people of color and
homeless people and all this kind of stuff. They don't
have anything to do with what's happened in the healthcare
system or to the housing stock or anything else. It's
so we have a lot more problems.
Speaker 1 (45:22):
Yes, back to stay Brian, know that we could probably
do a whole show on the healthcare system and how
broken it is. And I know firsthand how broken, uh
it is. I've seen it, and I've talked to plenty
of doctors that are they're leaving. They're leaving because they're
(45:48):
just done, you know, they're retirement age and they're done
with dealing with the insurances and the red tape and
just making their lives more difficult and reading their patients.
I remember, you know, was little girl my pediatrician coming
to the house. I remember those days hiding right.
Speaker 2 (46:14):
Right when my father, my father had a heart attack,
and we there was a doctor. We had a doctor family, uh,
physician on the maybe it was a patent. I think
it was a family position on the block where we lived,
and we were friends with the family. You know, my
father had a heart attack and he come running over
(46:37):
from his house to to take care of my father.
He wasn't as a regular doctor even but you know,
that's the way. That's the way healthcare it was and
the way it might be ought to be. But there's
a there's a lot would have to change for us
to and we're not here to talk about that, but
I but I do want to say that that fighting
(46:58):
for for a medicare for all program that would fund
everybody's healthcare would not be more expensive than what we
have right now, and it's what we need to do
as for starters, and then after that we can start
figuring out how do we reorganize some of the issues
that are causing problems for quality care and quality of
(47:21):
health and so forth. So yes, yes, yes, it's it's
a big mess, but it's part of a larger mess
that we're into right now.
Speaker 1 (47:32):
Yeah, yes, that is true. Why would you like the
readers to take away from your books practice saffort?
Speaker 2 (47:44):
Yeah, well, I think you've said it. You know, respect
and also the importance of autonomy to people As we age,
people have to feel that they still have a role
in their own lives, in their family, in their community,
and so forth. So what we can do is try
(48:06):
and ensure that there are opportunities there that they can
play that role. It's it's it's it's not making them
more dependent, it's making them more independent. If we can
create that, that those opportunities, and that's what the PACE
model does for disabled elders. And it would be great
if healthcare in general could do that for everyone, not
(48:30):
even just for elders, but particularly for elders, because we'd
start losing you know, are are we slow down, We
lose our coordination, ituse our reflexes. We lose a lot
even when we're not even if we don't have dementia.
I can tell you about word finding issues. My wife
and I are both in our ladies and and you know,
(48:52):
we laugh about it, but half the time we can't
remember that we know the names of somebody it's standing
in front of us. We can't remember it. You know,
five minutes from now, I'll remember it.
Speaker 1 (49:04):
Yeah, Yeah, I'm having I'm encountering that sometimes myself.
Speaker 2 (49:11):
Yeah. So so so people. People have to get used
to the idea that slowing down doesn't mean the end
of life. Slowing down doesn't mean you can't have a
quality of life. It just means that you have to
slow down, go with the go with the flow, and
and yeah, take it easy, you know, and and and
like that. But you know, ensuring autonomy and independence it
(49:35):
does does involve respecting life and respecting elders and the
idea that they are just a sort of an albatross
or a drag or people we have to take care of.
That's that's not necessarily true, and it was It's not
something we should fixate on. What we ought to fixate
on is how to make any fun.
Speaker 1 (49:57):
Okay, I agree one hundred percent, Doctor Mark Day, Brian
enjoyed chatting with you so much. Where can people purchase
your wonderful book I'll fly away stories about amazing disabled olders.
Where can they purchase that?
Speaker 2 (50:17):
It should be available everywhere. You can get it online,
and you can get it at the local bookstores. If
they don't have it in stock, they can order it
for you. It's not any problem to to get it
ordered and online. I tend to prefer I recommend people
(50:40):
consider going to a place called bookshop dot org because
they give a substantial amount of their income profits goes
to helping to sustain independent bookstores which are struggling because
people won't read books and as much anymore, and because
(51:01):
the big guys like Amazon pretty much are able to
crowd out the small guys, you know, And that's that's
what's going on in a lot of aspects of the economy.
Speaker 1 (51:16):
Yes, bookshop dot org, I've here a lot of people,
a lot of guests while recommending that lately. And how
can people connect with you? Do you have a website?
Speaker 2 (51:27):
Yeah, well I have a website, but that's not the
way it connected with me. I'm happy. I'd love to
have people go to my website if they want. It's
just Marksafer dot net m A R C S A
p I R dot N E T. But if anybody
wants to write to me, it's uh uh my name
(51:47):
at gmail dot com. Pretty simple, Okay. I'm happy people read.
If people do read the book, if they get the
book and read the book, love to hear their comments,
including criticisms of these issues. It's concern, but I think
(52:08):
I think most readers have really loved the books and
their reviews have been wonderful.
Speaker 1 (52:13):
Yes, yes, I definitely know that people would love your book.
They read and I, you know, like the title. I
love the cover of it. It's a very informative, inspiring book.
It's it's really phenomenal, and I thank you for writing it,
(52:37):
doctor Staper, and for.
Speaker 2 (52:40):
You, I want to thank you. I want to thank
you for interviewing me. And I must say this is
one of been one of the most engaging interviews that
I've had of several that I've been doing.
Speaker 1 (52:54):
Oh, thank you very much.
Speaker 2 (52:56):
You got into the subject matter. Thank you very much
for doing that.
Speaker 1 (53:00):
Oh You're welcome. It's close to my heart and reading
this book if it's just so close, you know, to
my heart. My heart is for the caregivers, for the elderly,
you know, people who are disabled. I just have a
love for them. And I thank you for all that
(53:22):
you have done in your lifetime to help other people.
And just you know, thank you for being who you
are and what you have done and spending time with
me today.
Speaker 2 (53:37):
Yeah, I appreciate your sharing your story about it, about
your what you went through with your husband. That's really good.
Speaker 1 (53:44):
Well, thank you. Try to tell the audience, excuse me.
All the information about doctor Mark Staper will be in
the blog that Genie White, the Station manager writes and
produces the show. And I want to Anglowean Coldwell, who's
CEO with passionate World Talk Radio Network, who makes us
all possible. And I want to thank you the listeners.
(54:06):
Thank you for listening. Subscribing if you don't already subscribe
the Chatting with Betsy, please do those for free. I'm
on Spotify, Amazon Music, iHeart tim a few. If you
have Alexa, you can Callgraham Alexa for Chatting with Betsy.
Take me whereever you go to and please share the
(54:29):
show to help other people. I know people would love
to read alef wi Away. It's very inspiring. We need
to treat the elderly with respect and dignity because folks,
if we're lucky enough, we will all be elderly one day.
It's not to be taken for granted as a privilege.
Please treat the elderly with respect and dignity because that's
(54:53):
how you would want to be treated. And I always
believe in treating others the way I want to be treated.
It's how I always treat people, and I will always
treat people that way because that's just who I am.
And if you want to follow me, I'm on Facebook
bets Worzel w or Z e l And as I
(55:14):
always say at the end of my show, in a
world where you could be anything, please be kind and
shine your life break because we need it now more
than ever before. This is Betsy Worthal. You're a host
of Chatting with Betsy Atasha World Talk Radio Network, a
subsidiary of Global Media Network LLC. Chat with you soon,
(55:36):
Bye bye now
Hello, everyone, this is It's the Worsal. You're a host
of Chatting with Betsy un Patsion World Talk Radio Network,
a subsidiary of Global Media Network LLC our mantrs to educate, enlighten,
and entertain. The views of the guests may not represent
those of the hosts of the station. Folks. Before I
(00:22):
introduce my guest today, I want to do two public
service announcements. One is September is World Alzheimer's Awareness Months,
and if you have any concerns about your memory, please
consult your primary care physician. And September is also Suicide
(00:42):
Prevention Months. Do you have any mental health concerns struggles,
please consult your primary care physicians for referrals in your area.
And if you are in crisis, please call the hotline
nine to eight eight and I'm going to tell you
about my guest today. My guest today is doctor Mark
(01:05):
M A R C steperg SAPI R. He is a
retired primary care geriatric public health physician, is an essayist
and political activist. He was the first medical director of
the Center for Elders Independents for Disabled Elders for nine years.
(01:26):
He also previously worked for United farm Workers and was
a panel member of the MEDS held Doctors for Single
Payer Healthcare. A graduate at Brandess University in Stanford Medical School,
he also holds a master's degree in public health from
the University of California at Berkeley. He is the author
(01:49):
of five plays and writes fiction, poetry, and music. Very
talented writer, author. And I want to welcome doctor Mark
Say birthday, Jiva, Betsy.
Speaker 2 (02:06):
Welcome, Dr d thank you, thank you so much for
inviting me to talk with you.
Speaker 1 (02:12):
Oh, you're welcome in my pleasure. I had to ask
because I love a song, I'll Fly Away, one of
my favorite songs. How did you pick that title? I'll
start with that.
Speaker 2 (02:28):
Yes, well, you know the stories are based in a
program of all inclusive care for disabled elders known as PACE,
and I was the medical director for nine years there.
It's the one that we have here in the San
(02:49):
Francisco Bay area known as the Center for Elders Independence.
And so I began writing stories while I was doing
that about many of the participants who I got to
know very well. And in deciding on what the title
(03:10):
of the book, I initially had a different title called
in Concert, but I switched over to I'll Fly Away
because of how much I was impressed by the music
and the social content that took place in the adult
(03:31):
day health centers that we had, and that the participants
took such joy in. And there was a lot of
gospel music, in fact that a gospel choir, and one
of the stories is about the formation of the gospel
choir and an acting group that we had at Center
for Elder's Independence. And so I was aware of this
(03:52):
gospel song both from attending certain funerals and church services
with some of my patients participants, although I was poorn
up Jewish, and also from the fact that it was
(04:14):
in the film Oh Brother, where Art Thu was a
very extensive musical background film, and and I used it
for that reason, but because of the concept of approaching
death and flying away. It turned out it wasn't until
(04:36):
after I had actually written the book that I found
out that the book, the story the Excuse Me, the
song I'll Fly Away was written by a young man
who was the the son. He was a white fellow
in the in back in Indiana, I believe, the son
(04:57):
of a cotton former, and he picked cotton his youth
and at the same time he wrote a lot of
gospel songs. This song was taken from prisoners, not from
a religious environment, who were singing about their desire to
(05:19):
fly away from prison. But he changed it into a
gospel song that became widely sung in both African American
and in and in white churches in various Protestant denominations.
It's probably not quite as as prominent as Amazing Grace,
(05:43):
but it's a very prominent song, and I thought it
was very fitting for for the for the program that
I was working in, and it's a very powerful involvement
with the lives of its participants.
Speaker 1 (06:00):
Yes, I get into music before I forget to ask
this question of what motivated you to write your book
with the various stories of the individuals that you encountered
over the years.
Speaker 2 (06:20):
Well, as I say, it's a social program as well
as a medical program. In fact, the people who sponsored
who manage it, would like to highlight that it is
essentially deeply engaged with the social lives of the people
who joined this program. And so when I was early
(06:44):
on as the medical director there at CI, I decided
that I would like to begin a reading and reminiscences group.
We know that reminiscences and memoir writing is very helpful
for elderly people. And at this point, I'm an old
(07:06):
man of eighty four and this is my second more
actually myself, and it's extremely useful for elders. So I
started this reading and reminiscences group where we read short
excerpts from various authors. A couple, for example, were Toshio Mori,
(07:28):
a Japanese American well known out here in Oakland in
the forties nineteen forties, and lengthston Us, who was very
famous African American writer. And we would just read excerpts
from some of their works that I had chosen based
on the fact that I thought that they would evoke
(07:50):
memories in people's lives. And then we go around the
room and they were usually I don't know, six to
twelve or fifteen people in the room who they wanted
to be part of the reading group and a discussion
group from a day center where there might be fifty
people that day, and they would tell their stories. And
(08:12):
these stories were amazing, and they were such fun to
hear about people's lives, and you find a lot of
that in the book, a lot of those stories. And
so then I started writing essays based on this experience
that I was having with the reading and reminiscences group.
When I decided to retire when I got to the
(08:33):
age of sixty from this position, the manager, well, the
executive director of CEI, said to me, well, you're the
only one that's been here the whole time in this program.
I would like if you would write a history of
the program. And I said, well, I'm not really that
(08:54):
interested in writing the history of the program, but I'm
very interested in writing about some of the stories about
the participants in the program. He said, Okay, that'll be fine.
Just include some section on the administrative development of the program,
which I did, but I've taken that out of this book.
And this is just a book of the stories about
(09:14):
the people. And so that was its origins, and so
many of the stories got written after I left CI,
and then I've chosen from the many, I wrote a
selection that I thought would create a whole environment, a
(09:35):
sense of the environment's social environment of this community based
program that provided everything from physical therapy, occupational therapy, social
activities in the day center, clinical clinical care twenty four
hours seven twenty four to seven, including hospitalization, and you know,
(10:02):
all based on largely on Medicare and Medicaid funding, and
so that's where the idea came from and that's how
it evolved.
Speaker 1 (10:16):
Well, i'll tell you what. I read this book a
while back, so I don't remember everything is there. Read
a lot of books for my show.
Speaker 3 (10:24):
But in reading the book, Doctor s Acer, I was
envious that this program that you have is sounds so
wonderful that I was jealous because I wished it was
here where I lived for.
Speaker 1 (10:43):
My mother in law. My mother in law went to
adult daycare three times a week, two or three times
a week, but it was not anything like your program.
I was really I was thinking, Nan, I wish this
could be cloned and be everywhere. It sounds like wonderful.
Speaker 2 (11:06):
It is. It is. It is everywhere, Betsy, but it's
it's not super pervasive because it's it's only for disabled folks,
So it's you have to be elderly, but you also
have to be disabled. And that's why the Medicare and
(11:29):
Medicaid can provide a lot of money for for the
services that it provides, because these folks are all eligible
to be in nursing homes and there are people that
would rather live in the community and continue to have
a good social life and lives with their families and
so forth, and so this program enables them to do that.
(11:53):
But it is everywhere. There are I think about one
hundred programs across the country. I'm sure there are some
the New York area. But unfortunately, it's not a program
that that that can be funded for just people who
are elderly, because that's not the way our healthcare system
(12:17):
is working as a full profit healthcare system, and you
don't often find programs as comprehensive as that are not
based on trying to make money off of the health
and well being or a disease of people.
Speaker 1 (12:35):
That's true. How does someone find out if there is
a program like that in their area? What would they
look up? Doctor Saber?
Speaker 2 (12:43):
Yeah, well, well, there is a national Pace Association. The
various the various programs are not necessarily affiliated with each
other except through that they are doing exact same model.
It's written in law, and they all do the same thing.
They have adult day health centers. They have all these
(13:06):
services in the adult day's health centers, including all the
transportation and home care when people need it. And it's
so they're run by teams of health professionals, but they
will also include on the teams the people from the
who work in an adult day health center, or work
(13:26):
in people's homes, or even a driver of a van
or the lead driver or some driver may be part
of the team that meets several times a week to
talk about what's going on with their charges. And so
it's a very capable, powerful medical program that can do
(13:47):
early interventions. They can see. We can see people in
this model five or six times a week when they're
just very sick or just coming out of the hospital.
If we need to so they've planned, their airplant can
be changed on a dime, and they can be seen
very often, which is very It's unheard of in the
(14:08):
American health care system. In fact, there's a lot of
forces trying to restrict the number of times people can
be seen. This model doesn't view that as a as
a good way to do healthcare at all. We think
the more you see a person, the more you know
about what's happening with them, and the cent you're sensitive
(14:28):
to changes in how their environment or their lives are going.
And that includes social aspects in their lives as well
as medical.
Speaker 1 (14:40):
That's very true. I feel bad. And what I really liked.
One of the many things I liked was your personal
relationship with the participants. You were really involved, and I
think that's wonderful because don't see that now. You know,
(15:03):
doctors only have so many like maybe ten fifteen minutes
if you go into their office and they're pressed for time.
And I just think that the work that you have
done is really wonderful and I want to thank you,
doctor Staffer for what you have done in your community.
Speaker 2 (15:27):
Well, thank you, thank you for that. But I got
to say that it was a great learning experience for me.
I was I was both learning and teaching at the
same time, and doing medicine and enjoying the social interactions
with these folks. They are a lot, to say, a
lot of creative energy. There. There are people, you know,
(15:53):
creating all kinds of interesting things. And that's why I
mentioned the theater group that evolved that of our program,
and what they call the Heavenly Choir that was singing
gospel music, and so there were there were many aspects
of the program that were very enriching for me personally.
(16:15):
So on the one hand, I feel like I was contributing.
But on the other hand, I was getting back so much,
and that's hopefully something that you can sense in the
in the in the pub in some of these stories.
Speaker 4 (16:29):
I mean, I learned so much from people, and now
about you know, I learned, I learned I was not
when I started. I was a primary care doc, family
primary care doc. When I started doing this, I'd been
at fifteen years doing medicine in community clinics and in
(16:49):
health departments and so forth, and so I was not
a geriatrician per se. So I had to learn geriatrics
on the job, and it is a specialty with particular
nuances that are not necessarily part of general training.
Speaker 2 (17:08):
But a lot of what I learned was from the participants,
these elves, the people that I was taken care of,
you know, approaches to issues like dealing with complex family
problems or with death and dying, and there's just so
much that was enriching or as I say, these stories
(17:32):
about people's lives. I wish I could tell some of
the stories here, but you know, the very first stories
about a woman who she just didn't want intervention, or
when she even when she was had a diagnosis of cancer,
she wanted to be left alone. She was very religious,
(17:52):
and she was in her late eighties, and she felt
like her life had been wonderful. This is a woman
who was a great great grandmother many times over, and
she had a very loving family. And when when she
was dying, they took me into their family. And there
(18:12):
were so there were always ten fifteen people in the
hospital visiting her and so forth. And I mean, I
just and the amazing thing was even earlier on when
she wasn't sick, finding out that she was a woman
who came from Sheresport, Louisiana. And we were at a
picnic in the out of an island here called Alamita,
(18:39):
that that the that the agency had, and and I
brought my guitar and I was singing some songs and
asked if people have had any knowledge about an old
folk singer being dead now, but the very famous named
lud Billy and this woman she just piped So yeah,
(19:01):
I know him. He married his sister, married my brother,
and after he got out of prison, he used to
come and sit up on a porch and play, and
all the people family and all the community people come
over and it was some Elton. So this just came
out of no place. And this is an example of
the kind of things that just were so enriching for
(19:24):
everybody in the program, the other participants, but me, I
speak for myself, and so I mean it created an
identity out of someone who in most medical settings will
just appear to be, you know, a patient too, you
don't know that much about. And the stories are full
(19:45):
of stories like that, the couple that very in their
nineties who drove across the desert and their air conditioning
went out and all that, and what happened, and how
the other doctor was able to get them back home
without having the surgery that doctors out in Texas were
(20:09):
threatening he needed to have, and so forth. It's just
it's just it was a very enriching life for me there.
And the only reason I stopped doing it after almost
a decade was because it was getting harder for me
at sixty to keep up with the with the complexity
(20:29):
of it all, you know, because these were people who
were very disabled and needed a lot of medical care.
In plus they were administrative responsibilities in the managerial realms.
Speaker 1 (20:41):
I feel doctor Safer that that I did get in
reading your book, that you learned so much from the
patients that you were involved with. It was kind of
like to me a give and take. You know, you
gave the care and you took a knowledge away from
(21:04):
your patients. And I really like to stress. And I've
said this on my show many times before. We can
learn so much about a person if we take the
time to listen people that are elderly, they are history books.
(21:25):
I say, talk to them, learn from them because they
hold a lot of knowledge, experience and knowledge that we
need to know.
Speaker 2 (21:36):
Yeah, relationships tend, they tend to become pretty superficient unless
we do that.
Speaker 1 (21:47):
Yes, And I love that you had a music and
theater groups. And there's a lot to be said for music.
I haven't music therapists. It is scientifically been proven that
music helps those who have dementia. They will start singing
(22:11):
it almost like brings them back to life. They'll crap,
they'll move their feet if they can, and you could
just see their expression change. I know in my own
experience with caregiving, my husband had early on set Alzheimer's.
I would play his favorite music, especially if he was agitated,
(22:34):
to calm him down and to for him to eat
and then be able to give him a showers music
works wonders. It really does. You could just see the
difference absolutely.
Speaker 2 (22:49):
One of the stories, one of the stories in the
in the book, I named the woman almost but she
had dementia, quite advanced dementia, and yet she was a
fantastic singer in that in that music group. She never
(23:09):
forgot any of the songs, the gospel songs that she
had some when she was younger, and she had this
ethereal beautiful voice. It was it was almost miraculous to
hear somebody who when you conversed whe her, you could
tell that she was had lost a lot of her
(23:31):
cognitive ability and you didn't really remember where she was
or who you were and so forth. And to hear
her singing almost as if she were a professional performer.
It was such a beautiful voice.
Speaker 1 (23:48):
Yeah, it is incredible. My husband used to he would hum,
and I'm thinking he could hum a tune, and I
just found it incredible that part of the brain works
he remembers the tune, but he doesn't know how to
use a fork. It's really and lets you witness it,
(24:09):
you know, it's just really incredible. Time we went to
the dentist and I said to the hygienists. I said, listen,
just put it on Johnny Cash. Matt loves Johnny Cash,
and you shouldn't have a problem. So she put on
Johnny Cash and that did very well. And told you know,
I'm near the end of a little antsy, but music
(24:30):
really helps. I've seen the firsthand witness to it, so
I know that music does work. And I also one
of the many things that I did get from your
book is to respect the wishes of our parents, are grandparents.
(24:57):
You know, some people don't want prolonged a medical treatment.
They and that's their choice, and even though if we
may not agree with it, we should honor and respect it.
I just feel, you know, might get to be a
certain age. I'll be honest with you. Don't come to
(25:18):
I don't want treatment if I have if I have
a terminal disease and it's not going to help. I
want quality. I want quality of life doctor daper over quantity.
Speaker 2 (25:34):
And I always thought that's fantastic. Yeah, I think that's
the way. That's the way I look at it. Also
as a person who is elderly, and in the book
there's stories about the conflicts we had with This is
an interesting thing that happens. It's good to be talking
about this with you, Betsy, because a lot of times
(25:56):
people don't talk about end of life until there's already
some tragic crisis going on, at which point it becomes
kind of difficult because, for example, if you're the daughter
or son who's been caring for your mom, use that example,
through terrible disability and disease and doing all the care,
(26:18):
which can be very tedious, and actually we have with dementia,
we have caregivers that die before the people who have
dementia dying just from the stress of all the workload
and the emotional stress of it. But anyway, if you've
been doing that your whole life and no one has
(26:40):
ever talked to you with the person you've taken care of,
the parent you've taken care of, about their wishes, and
they haven't expressed their wishes to you in terms of
what kind of care they want, you may decide that
you want to let somebody decide that you should decide. Well,
they've given you the right to be their spokesperson. That's
(27:03):
the way, that's the right thing to do. But what
if they've already had the desire to not be overtreated
or to not be put on machines for when if
their heart stop, when their heart stops, and so forth.
If if that hasn't been talked about and decided with
(27:23):
the person and the caregiver recognizing that they have a
right to make these decisions, then either way, then then
then it can create a tremendous complex conflict towards the
end of life. And you don't want that. You want
(27:44):
people to be able to kind of smooth things out
and be able to handle these crises in a way
that they don't. Nobody gets all upset, you know, into
conflict over it. So there are stories like that in
the book, and that happened, and that's why we had
an ethics committee to help people discuss these things. But
(28:07):
in these programs, in the PACE model, they always ask
people when they joined the program, well, what would you
want to be done for you if you say, suddenly
have a heart attack and your heart stops. So that's asked,
do you want to be resuscitated? Do you want to
(28:27):
play on a machine? You're not? And it's also includes
things like feeding tubes, taking a tube through your stomach
that you will never be eating eating again. Well, if
it's if you lost the ability to swallow from a
small stroke. It could be reversible, but in many circumstances,
(28:48):
once somebody can no longer swallow, it's not reversible. And
so putting a feeding tube in the means that that's
permanent and they will never again taste food if they
can't swallow. Now, is that acceptable to stay alive? Is
that quality lofe acceptable? Well, so some people say yes,
I just want to stay alive, and other people will say, well, no,
(29:11):
I've had my good share of quality of life and
that's not the way I want to go out. So
these discussions are intrinsical within this model, even though on
the average people in the model might live four or five, six,
ten years for twenty years, even I when I left
(29:34):
Center for Elder's Independence, there were still people there that
joined when the program opened when I became the first
medical director, who were still alive, and that was nine
years later. So it's totally unpredictable. This is not a hospice.
People are not joining this program to die, even though
(29:57):
in general people will die in the program, because very
few people decide to sign out of it. They love
it so much.
Speaker 1 (30:06):
I feel doctor Sabra and I've been doing the show
almost six years, and I very pro active with talking
about end of life care dignity and end of life
and how doing your living well medical directive is actually
a gift to your family so they don't have to
(30:30):
make those decisions because you made it for them. It's
very important because you can't even stress that enough.
Speaker 2 (30:39):
Yes, I completely agree with you, but they may still
have to make difficult decisions, even if some of it
has been explicitly written out and spoken out and so forth.
But you might as well try and get as much
as much clarity on the views of the person who's
going to go through this advance so that so that
(31:02):
there's not so much conjecture. And it's my opinion because
I've been taking care of them and they owe it
to me to do what I say, and so forth
and so on. You know, it's like this is one
of the one of the stories is about a mistake
that I made where we did get the person. We
did get the person's wishes when they came in the program,
(31:22):
and we review them periodically if they go into hospital,
We review them when they go in, when they come out,
and so forth, to make sure that they haven't changed
their mind about something, which obviously there is their right
to do and and so what. But in this case,
I was early in the program. I was just you know,
(31:46):
was the first year myself as a medical director, and
when I got the healthcare issues which we put on
a you know, a form and so forth, I forgot
to send it home. We forgot to have it discussed
at a family intake meeting when when the person was
admitted to the program. And as a result, the young
(32:07):
the young daughter who was responsible all the care, she
felt that we were trying to compel her mother to
have these wishes. Well that wasn't true. It was their
mother's wishes. But she didn't want to let go of
her mom and so she had to brain somebody for it.
This was my mistake that we didn't have a discussion early,
(32:30):
because sometimes people get very upset when they find out
that their mother didn't want to be put on a
machine or or have a feeding tube or something else
some other interventions.
Speaker 1 (32:46):
Yes, I remember that story, and you know, I think
that you know, I know, doctors take the oath you
know to you know, of to do well by you
know people, you know, to prolonged life but I think
it comes to us a time where you know you
(33:11):
have to, as I guess as a physician, you go
over the pros and cons with the family of you
know about treatment. You know, is this treatment really going
to help prolong and get this person a quality of life?
And a lot of family members, as you know, doctor Seber,
(33:33):
because you've been a doctor for many, many years, they
don't want to let go. And folks, I'm a Jersey girl,
so I'm just gonna and I'm very blunket. But sometimes
you've got to let go, and it's not up to you,
it's what your loved one wants. Now. I had my
(33:53):
husband go as soon as he was diagnosed. We went
and we did our living wills. He did not want
to see eating too. And his last year of life
he lost a lot of weight, and the neurologist said, well,
you know, I'm macnepic eating to him And I said,
why why would I do that to him? Prolonged his
life for what? And by then he was very much
(34:17):
in progressing and I would not do that to him.
I honored his wish. Sometimes it's hard, it's difficult and
heartbreaking to see someone deteriorate and see someone die. But
I loved mad enough to let him go, and they
(34:37):
knew it was his time was starting to come to
his time acceptance. That's the thing I got to say.
Speaker 2 (34:44):
I think that's I think that shows how much you
loved him. Frankly, you know, that's the phrase you were
the mantra, the phrase that you were looking for. There
is what the doctors supposedly. But I mean it's not
anything in legal terms, but it's above all, do no harm.
(35:08):
But that's but do no harm. It doesn't mean that
that that people should be their lives should be long prolonged,
if they're if they're suffering is extreme, or if they
don't want to uh to suffer more. Doctors are just
supposed to avoid doing harm to people. And like you
(35:31):
said at the very beginning of the interview, it's about
quality of life. I mean, that's what we all want,
is quality of life. We want to stay alive, but
we want it to be a meaningful in a sense
that we're not just unremitting and and terrible, excruciating pain
(35:52):
or suffering of any kind. That's you know, that's if
it gets to the point we're the only way you
can survive is by being drugged all the time, so
where you to where you're not even aware of what's
going on around you. And then is that a quality
of life. Well, it's up to the individual to decide.
(36:13):
As a doctor, I just I have always been related
to the idea of doing what what the patient wants.
But I think it's also important for the doctor to
be realistic for people what the expectations are given whatever
they're facing, to tell them what you think is going on.
(36:34):
One thing I learned, like from that first story with
with the patient with cancer big more treatment the women
with advanced cancer is very severe, was that that you
can't predict death. And so it's even though I can
(36:55):
tell people what I know is happening to them, to
mean that I can say I know when you're going
to die, I don't. Doctors have an algorithm that supposedly
tells them if somebody has X number of weeks or
so so much to live, but it's not always right,
(37:18):
and so you don't want to just operate on that basis.
It makes much more sense to operate on the basis
of quality of life and what the patient and their
and their loved ones feels is the most meaningful thing
to do. But the person who's going through it is
always should be that, if they're cognitively able to, is
(37:41):
the person who should be allowed to have that autonomy.
And and that's what we got to respect. And in fact,
I'm going to put an answer the book in our
magazine pretty soon here and it's already been laid out,
and I put a title of respect Life is the
(38:01):
title of the ad for the book, and I mean,
I think that's that's why I wrote the book. I
think the book is about respecting life, as is this model,
this program of the program of all inclusive care for
the elderly. And as I said, people can see if
there's a program like that near them by going to
(38:22):
the National Pace Association website. But don't forget it's you've
got to be certifiable disabled enough that you would need
nursing home level of care, and this is a way
to avoid that. So it's just not about simply being
old and having you know, certain a few needs. It's
(38:47):
got to do with activities. A data living you can't perform,
and instrumental activity is a daily living you can't perform,
and so forth.
Speaker 1 (38:58):
I have to ask your doctor, Saber what can the
healthcare system that can they better support the needs of
the aging populations, because as you know, I mean, I'm
a baby boomer. I'm going to be sixty eight December,
and we baby boomers, I think we're going to change
(39:18):
how we want to live out the rest of our lives.
But how can the healthcare system better support us and
our aging?
Speaker 2 (39:31):
This is a lot of aging. This is an extremely
important question, but I gotta sadly say that it's not
a question that I can address in this interview. And
I mean, I will make a couple of comments, but
the reality is that the healthcare system is in a
(39:51):
lot of trouble, and to talk about what we ought
to do and how we can make things better is
it's almost, in a sense, the court before the horse,
because in my view, you know, we should have met
a care for all. You know, it's been languishing in
(40:14):
Congress for years and years and years. Bernie Sanders has
a great bill and Senate in Promila, Jayapaul in the House,
and they're not going to pass. We can't even assure
that people have the right to vote anymore. We can't
stop them from picking picking up people on the streets
(40:34):
who are not criminals and disappearing them and having masked people,
kidnap people and send them to foreign countries in prisons
when they haven't even had a chance to be before
a judge or to be charged with a crime. I mean, so,
how are we going to fix the healthcare system in
(40:55):
that environment? I don't think there's a whole lot that
we can do, frankly, until we fix a lot about
what's going on right now in this country. And unfortunately,
I also don't think that as much as I as
I have extremely strong feelings against a lot of things
(41:19):
that are going on in the country right now, I
don't think it's going to be solved by an election
or two. I do think people should vote, for sure,
and I work to help in elections in the over
many years and in the past. In fact, I was
in nineteen eighty three, before perhaps some of your listeners
(41:42):
were born, even I was the co leader of a
drive in San Jose, California here called Jobs with Peace,
which called for reducing the military budget in order to
provide better jobs in social services and programs to meet
people's needs. And it passed in San Jose. People said
(42:05):
it wouldn't pass because it's a military industrial area. But
it passed in the city overwhelmingly, with something like sixty
two percent or something like that. But the thing is,
at that time, these resolutions passed in a lot of
big cities, but it didn't mean anything. We don't have
(42:27):
a government that was responsive to that. And it's not
just a question of voting. I mean, there's a lot
wrong with how the structure of the system is, and
certainly in healthcare it's particularly bad because everything I mean,
even even though when I was in medical school and
(42:48):
so forth in the sixties, medicine was private and it
was small doctoral offices and small groups medical groups, but
they were autonomous and they had the right to make
a lot of decisions about how to care for people
and how much time to spend on them. And so
if we saw it, well, now most doctors are just
(43:09):
highly paid workers for hospital chains and insurance companies and
so forth and so on. They don't have the time.
I mean, like you said, you said fifteen minutes, but
some places doctors only have seven to ten twelve minutes
to spend with each patient, and most of that has
(43:30):
to be spent dealing with the computers and computer programs
and so forth, and so you know, I mean, you
might start. We could start by trying to get men
or care for everybody so that everybody would have coverage,
everybody could go to any doctor they wanted, and everybody
would be able to avoid waiting too long for symptoms
(43:53):
and diseases. As I said, Pace tries to see people
as many as often as it seems is appropriate, and
it's fine if the patient wants to be seen more often,
that's fine too. That's not where the cost in medical
care is from. The cost is in I mean, just
as an example, Medicare itself operates on a two percent overhead.
(44:17):
The administrative costs two percent. The private insurance for the
Medicare eligible people it's called Medicare advantage, that operates on
about a twenty percent cost overhead. But they get people
to switch. In some cases, they're now forcing people to switch.
They're forcing certain union contracts to accept switching people without
(44:38):
them even doing voluntarily to the private sector and therefore
losing that eighteen percent of the money that should be
going to care. And so these are the kinds of
problems that we face because we don't the public doesn't
really have control of the political system. It sure worse
(45:00):
because it's not even worse because they've figured out how
to blame you know, immigrants and people of color and
homeless people and all this kind of stuff. They don't
have anything to do with what's happened in the healthcare
system or to the housing stock or anything else. It's
so we have a lot more problems.
Speaker 1 (45:22):
Yes, back to stay Brian, know that we could probably
do a whole show on the healthcare system and how
broken it is. And I know firsthand how broken, uh
it is. I've seen it, and I've talked to plenty
of doctors that are they're leaving. They're leaving because they're
(45:48):
just done, you know, they're retirement age and they're done
with dealing with the insurances and the red tape and
just making their lives more difficult and reading their patients.
I remember, you know, was little girl my pediatrician coming
to the house. I remember those days hiding right.
Speaker 2 (46:14):
Right when my father, my father had a heart attack,
and we there was a doctor. We had a doctor family, uh,
physician on the maybe it was a patent. I think
it was a family position on the block where we lived,
and we were friends with the family. You know, my
father had a heart attack and he come running over
(46:37):
from his house to to take care of my father.
He wasn't as a regular doctor even but you know,
that's the way. That's the way healthcare it was and
the way it might be ought to be. But there's
a there's a lot would have to change for us
to and we're not here to talk about that, but
I but I do want to say that that fighting
(46:58):
for for a medicare for all program that would fund
everybody's healthcare would not be more expensive than what we
have right now, and it's what we need to do
as for starters, and then after that we can start
figuring out how do we reorganize some of the issues
that are causing problems for quality care and quality of
(47:21):
health and so forth. So yes, yes, yes, it's it's
a big mess, but it's part of a larger mess
that we're into right now.
Speaker 1 (47:32):
Yeah, yes, that is true. Why would you like the
readers to take away from your books practice saffort?
Speaker 2 (47:44):
Yeah, well, I think you've said it. You know, respect
and also the importance of autonomy to people As we age,
people have to feel that they still have a role
in their own lives, in their family, in their community,
and so forth. So what we can do is try
(48:06):
and ensure that there are opportunities there that they can
play that role. It's it's it's it's not making them
more dependent, it's making them more independent. If we can
create that, that those opportunities, and that's what the PACE
model does for disabled elders. And it would be great
if healthcare in general could do that for everyone, not
(48:30):
even just for elders, but particularly for elders, because we'd
start losing you know, are are we slow down, We
lose our coordination, ituse our reflexes. We lose a lot
even when we're not even if we don't have dementia.
I can tell you about word finding issues. My wife
and I are both in our ladies and and you know,
(48:52):
we laugh about it, but half the time we can't
remember that we know the names of somebody it's standing
in front of us. We can't remember it. You know,
five minutes from now, I'll remember it.
Speaker 1 (49:04):
Yeah, Yeah, I'm having I'm encountering that sometimes myself.
Speaker 2 (49:11):
Yeah. So so so people. People have to get used
to the idea that slowing down doesn't mean the end
of life. Slowing down doesn't mean you can't have a
quality of life. It just means that you have to
slow down, go with the go with the flow, and
and yeah, take it easy, you know, and and and
like that. But you know, ensuring autonomy and independence it
(49:35):
does does involve respecting life and respecting elders and the
idea that they are just a sort of an albatross
or a drag or people we have to take care of.
That's that's not necessarily true, and it was It's not
something we should fixate on. What we ought to fixate
on is how to make any fun.
Speaker 1 (49:57):
Okay, I agree one hundred percent, Doctor Mark Day, Brian
enjoyed chatting with you so much. Where can people purchase
your wonderful book I'll fly away stories about amazing disabled olders.
Where can they purchase that?
Speaker 2 (50:17):
It should be available everywhere. You can get it online,
and you can get it at the local bookstores. If
they don't have it in stock, they can order it
for you. It's not any problem to to get it
ordered and online. I tend to prefer I recommend people
(50:40):
consider going to a place called bookshop dot org because
they give a substantial amount of their income profits goes
to helping to sustain independent bookstores which are struggling because
people won't read books and as much anymore, and because
(51:01):
the big guys like Amazon pretty much are able to
crowd out the small guys, you know, And that's that's
what's going on in a lot of aspects of the economy.
Speaker 1 (51:16):
Yes, bookshop dot org, I've here a lot of people,
a lot of guests while recommending that lately. And how
can people connect with you? Do you have a website?
Speaker 2 (51:27):
Yeah, well I have a website, but that's not the
way it connected with me. I'm happy. I'd love to
have people go to my website if they want. It's
just Marksafer dot net m A R C S A
p I R dot N E T. But if anybody
wants to write to me, it's uh uh my name
(51:47):
at gmail dot com. Pretty simple, Okay. I'm happy people read.
If people do read the book, if they get the
book and read the book, love to hear their comments,
including criticisms of these issues. It's concern, but I think
(52:08):
I think most readers have really loved the books and
their reviews have been wonderful.
Speaker 1 (52:13):
Yes, yes, I definitely know that people would love your book.
They read and I, you know, like the title. I
love the cover of it. It's a very informative, inspiring book.
It's it's really phenomenal, and I thank you for writing it,
(52:37):
doctor Staper, and for.
Speaker 2 (52:40):
You, I want to thank you. I want to thank
you for interviewing me. And I must say this is
one of been one of the most engaging interviews that
I've had of several that I've been doing.
Speaker 1 (52:54):
Oh, thank you very much.
Speaker 2 (52:56):
You got into the subject matter. Thank you very much
for doing that.
Speaker 1 (53:00):
Oh You're welcome. It's close to my heart and reading
this book if it's just so close, you know, to
my heart. My heart is for the caregivers, for the elderly,
you know, people who are disabled. I just have a
love for them. And I thank you for all that
(53:22):
you have done in your lifetime to help other people.
And just you know, thank you for being who you
are and what you have done and spending time with
me today.
Speaker 2 (53:37):
Yeah, I appreciate your sharing your story about it, about
your what you went through with your husband. That's really good.
Speaker 1 (53:44):
Well, thank you. Try to tell the audience, excuse me.
All the information about doctor Mark Staper will be in
the blog that Genie White, the Station manager writes and
produces the show. And I want to Anglowean Coldwell, who's
CEO with passionate World Talk Radio Network, who makes us
all possible. And I want to thank you the listeners.
(54:06):
Thank you for listening. Subscribing if you don't already subscribe
the Chatting with Betsy, please do those for free. I'm
on Spotify, Amazon Music, iHeart tim a few. If you
have Alexa, you can Callgraham Alexa for Chatting with Betsy.
Take me whereever you go to and please share the
(54:29):
show to help other people. I know people would love
to read alef wi Away. It's very inspiring. We need
to treat the elderly with respect and dignity because folks,
if we're lucky enough, we will all be elderly one day.
It's not to be taken for granted as a privilege.
Please treat the elderly with respect and dignity because that's
(54:53):
how you would want to be treated. And I always
believe in treating others the way I want to be treated.
It's how I always treat people, and I will always
treat people that way because that's just who I am.
And if you want to follow me, I'm on Facebook
bets Worzel w or Z e l And as I
(55:14):
always say at the end of my show, in a
world where you could be anything, please be kind and
shine your life break because we need it now more
than ever before. This is Betsy Worthal. You're a host
of Chatting with Betsy Atasha World Talk Radio Network, a
subsidiary of Global Media Network LLC. Chat with you soon,
(55:36):
Bye bye now
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