Горизонт N45/826

RUSSIAN DENVER / HORIZON
20
Olga Zagulova,
founder of Therussiannextdoor.com
blog, was born in
Moscow, Russia. She relocated
to Colorado at the age of fifteen
and has been living in USA since
then. Olga graduated University
of Denver with a Bachelor Degree
in International Business
and has held several management
positions since she joined
a global relocation company in
2007. She currently resides in
Colorado along with her husband
and daughter and successfully
manages her career along
with her passion for writing.
Growing up I have always
wondered why older people toasted
Health for every birthday and
special occasion. It seemed overrated
and I often sort of nodded
appreciating the thought behind
it but not comprehending the true
significance of what being healthy
meant.
I’m not one to usually complaint
about how this year or that year
was better or worse than the other,
but I can’t help but anxiously send
this year to hell when the clock hits
midnight on December 31 st . I want
to cheer to health, have a shot of
something strong and dream that
when I wake up in the morning
on the New Year, all the troubles of
this crappy year will naturally stay
behind.
It just happens that in 2015 my
grandfather’s progressive ALS has
gotten significantly worse and my
family was faced with all kind of
medically related shenanigans
that we had to sort out. Having
absolutely zero background in the
medical field and being the main
Interpreter of the family, I became
the Project Manager of my grandfather’s
destiny. I’m not going to
bore you with all the choices we
had to make and the reasoning behind
them, but I felt that I owed it
to people to write about my experience
and what options people have
when it comes to medical care for
critically-ill patients in USA. I also
want to highlight the cultural differences
that became obvious to
me and which should always be
considered when making decisions
related to your loved ones
well-being.
See, when choosing care in my
home country, it is very easy. There
are no choices. If you are severely
ill, with no hope for recovery, you
can either stay at a Hospice, which
is paid for by the government, or
go home to be cared for by your
loved ones. Let me describe what
staying at a Hospice for free means
in Russia. You get to share an outdated,
all white room full of metal
beds, with several other dying patients.
You don’t have an emergency
button you can press when you
need a nurse. You will likely spend
most of your time wet or pooped
under, unless you pay extra for
a nurse to check you more regularly.
The food is meant to fill you
up but God forbid bring you any
pleasure from consuming it. Relatives
are typically responsible for
bringing in fruits, vegetables, juices
and snacks. I have also never heard
of nurses bathing a patient, all the
hygiene care is expected to be provided
by the immediate family, but
I’m sure there are some exceptions
to this. Bottom line, most medically
related experiences in Russia
have so much room for improvement,
I could spend all day going
through the wish list.
The alternative to the dark and
gruesome Hospice option is to
take a patient home and guarantee
needed care by family members.
There are no financial programs
to compensate relatives for their
time and effort, there are no incentives
or free equipment provided,
and there isn’t a way to get skilled
nursing at home paid for by the
government. The most assistance
you may get is out of pocket care
or a regional nurse stopping by to
check on a patient from time to
time.
Now, let’s talk about America,
as my goal is not to highlight what
is currently wrong in Russia but
to rather point out how different
the experience is in the USA. The
abundance of care options blew my
mind away and confused my heck
out of my family when we were
asked to make a decision about my
grandfather’s well-being. What I
have discovered is that there are a
number of programs, each tailored
to individual needs and wants, and
choosing the right program is only
a matter of preference and cultural
acceptance.
When you are discharged from
a regular emergency-like hospital,
you are normally offered to be
transferred into an acute hospital
N45/826 от 12.04.2015 e-mail: info@gorizont.com Simply the best
Medical Shenanigans
for additional rehabilitation treatments.
These centers are less aggressive
than regular hospitals,
yet still provide full medical care
a critically-ill patient requires. You
are expected to stay at such facility
for 1–2 months before being
asked to choose the next place to
move to. These transitional centers
are modern, clean and designed to
keep a patient safe and comfortable.
You are offered a daily menu
for food options and the hygiene
care is one any Russian patient
could only dream of. The nurses
do everything from grooming and
bathing to shaving and turning
you every few hours to avoid body
soars.
The first two hospital facility
options are pretty straight forward
and depend on the patient’s immediate
medical needs. Next steps
get a bit more confusing. We were
asked for a Medical Power of Attorney
and a Living Will, which
our family never thought of putting
together. Since we didn’t have
one, a Case Manager, who is assigned
to each patient at a facility,
asked whether we know what my
grandfather’s wishes for passing
were. Our eyes just about popped
out and I had to explain that in
our culture it is not common to
talk about death. In fact, now that
my grandfather is nearing the end
of life, as they say, we really cannot
talk about it. Culturally, we are
used to «hiding» death sentences
and not openly disclosing the severity
of sickness to the patient. If I
was to ask my grandfather what his
wishes for passing were, he would
say that I was «burying him alive.»
It took a while until I was able to
communicate our position to the
medical staff and quite honestly, I
left feeling inadequate. What our
message conveyed to them was
that we were being dishonest with
the patient and were not honoring
his wishes by not asking for
his requests upfront. In American
culture people like clarity and promote
individual rights. Everyone is
given a choice and is encouraged
to communicate it to the family in
a written format far in advance. In
contrast, Russians prefer to protect
patient’s feelings by not discussing
such sensitive subjects in the
midst of illness. Addressing future
funeral preferences or simply acknowledging
that the end is near
is perceived as offensive and disrespectful.
When you are discharged from
a rehab facility, a patient can either
move into a Nursing Home
or Hospice, or choose to go home
with either Home Health Care services
or Hospice at home services.
Let’s look at each option at a time.
Nursing Home provides the
most medical care and attention
out of all the options. It is a
24/7 facility focused on prolonging
life with outmost comfort for
the patient, while supporting all
of patient’s medical needs. Still, it
is a nursing home, where a patient
stays alone, surrounded by strangers.
In a case like ours, where a patient
does not speak or understand
English and is limited in his ability
to communicate all together due
to illness complications, it is the
absolute last resort for the family.
Culturally, nursing homes are
not well accepted and are feared
by the elders. For Russians, taking
your loved one to a nursing home
is often viewed as betrayal of your
duties and obligations as a family.
Financially, nursing homes are
typically paid for by the government
and your income/pension
gets taken away in order to help
cover for these costs.
Hospice is a facility designed to
create the most comfort and quality
of life for the last stage of life. It
is suggested as a place to send your
loved one when a patient has less
than 6 months left to live. There
are many hospices tailored to
various needs and preferences but
ultimately it is a facility that only
provides the absolute necessary
medical attention and is not meant
to treat any particular illness. The
costs for Hospice stay are normally
paid for by the state.
Hospice at Home program is
very limited in its offering. What it
provides is 1–2 hour per day visit
by a registered nurse and CNA.
There is also an on-call nurse available,
which is able to come out for
an emergency or consult a family
via phone. As you can imagine that
is hardly enough care for anyone in
a critical condition. Just as Hospice
facility, this program is only meant
to provide comfort and support
during the end of life experience.
It is not tailored to heal or rehab a
patient.
Home Health Care program is
one that is the hardest to get approved
for but is also the best option
for those who want to keep
their loved ones at home. There
is a specialty program called Private
Duty Nursing, which, if approved
by Medicaid, is able to offer
a patient a 12 hour per day skilled
medical attention. In addition,
some Home Health Care Agencies
are able to offer CNA or PCP hours
to help families with other duties,
such as cooking, cleaning, grocery
shopping or night visits. The most
challenging part of this program is
finding an agency that can provide
the needed staff and waiting for all
the approvals to come in.
Our Case Manager at the rehab
facility wasn’t proactive and did not
put any effort into finding a suitable
solution for our family. As a result,
we wasted several weeks trying to
complete our own research on the
available options, only to find out
we were already preapproved for
this long term care program and
could have easily started looking
for the proper staff far in advance.
Finally, there is an alternative
to all of the above options and that
is to ask the state to receive the allocated
funds for the medical assistance
and make own arrangements
for the needed care. What
this program provides is freedom
to find the necessary staff and an
ability to keep the patient at home.
There is also the most risk associated
with this option, such as the
responsibility of having to find,
source and vet each caregiver. It is a
lot to manage and ensure that there
are alternative options available in
case a caregiver fails to show up. In
all other options, Hospice/Home
Health Care Agencies guarantee
immediate staff replacement.
What have I learned from this
experience? One must absolutely
have a Living Will prepared in
advance, so that relatives do not
wonder what patient’s wishes are
and are not faced with having to
ask tough questions at a really bad
timing. Each person should have a
Medical Power of Attorney completed.
Any one of us could get
into a horrible accident and lose an
ability to communicate. You must
have a person appointed who is
trusted and able to made serious
medical decisions on your behalf,
whether it is your child, grandchild
or a close family friend.
If you find yourself in a position
where you must make a decision,
always place your values and those
of your loved ones first. There are
many programs available, both financial
and medical to help families
cope with the challenges and
provide the much needed relief.
Do not give up your principles and
don’t settle for what appears to be
most logical. Some choices are not
meant to be logical, they are meant
to be heart-felt instead.
Finally, do not expect anyone
besides your immediate family to
help you make the tough decisions.
Case Manager’s goal at any facility
is to offer you the available options.
As much as they like to present
themselves as your advocate, their
true role is to promote the facilities
of their choice. They will rarely go
the extra mile to research all the
options. It is your duty as a family
member to make an objective educated
decision in the best interest
of your loved one. Whatever decision
you make, I hope it gives you
and your family a peace of mind.
Lastly, don’t be shy and ask for
information from anyone and
everyone. I am blessed to have
wonderful family and friends who
were able to share their medical
expertise with me and guide us
in the right direction. Support is
everything when you are lost for
answers.