As you can imagine, at MEI, we
spend a lot of time observing and thinking about the decision-making
processes used by people who face the need to choose a type of dialysis,
either while waiting for a transplant or if they don’t qualify for or
want one. Keep in mind that no one wants to need dialysis, any
more than anyone wants to need chemotherapy or radiation. NONE
of the modalities tend to look good to those who need them! So—as with
many elections—the choice may be a matter of the least-bad option. A
recent social media thread illustrates that we still have quite a way to
go before modality choices are made in a way I would consider
ideal: by considering what matters most and choosing an
option that will give people the lives they want.
Why Not Home?
Let’s start with reasons some people gave for “choosing” standard
in-center HD. I use the quotation marks because a lack of
real choice was a theme, despite a Medicare rule since
2008 (16 years now!) requiring
clinics to inform patients about ALL of their options and where to
get them, including options a clinic does not
offer. This is still not happening—in particular, it’s
quite clear that home HD is an option some remain
unaware of:
-
“No choice in hemo no
kidneys.” -
“Only way for me to go.”
-
“I had no choice but hemo, because my
peritoneum doesn’t absorb properly.” -
“No choice after pd failed.”
-
“I didn’t have a choice, I
was on PD but had to have my catheter removed, so now I’m on
hemo.”
In some cases, a forced HD choice occurred due to PD
issues—catheters, failure to meet adequacy standards, etc. Even so,
transfers to home HD were seldom mentioned:
-
“Pd did not work it was a
disaster.” -
“How well I was hitting my clearances. I was on PD for a year
but it didn’t work so I’m on in center hemo
now.” -
“Had done the tube stuff before my first transplant. Dr in
the hospital recommended I use hemo now.” -
“I am currently sticking with in center hemo because I did PD
years ago and kept getting peritonitis. Then it became
a fungal peritonitis and they said I couldn’t do PD any more. Home hemo
sounds attractive in terms of feeling better, but it sounds very
time consuming, and I don’t want to put my old fistula
through the wear and tear of venipuncture more than 3 times a
week. I would love in center nocturnal hemo 3x/week, but the
closest place is an hour away.”
In other cases, fear—of supplies in the home,
self-cannulation, or “something going wrong”—led people to make the
seemingly “safe” choice of standard in-center HD—likely
without knowing that the outcomes for this option are objectively poorer
than for home HD and, in the U.S., are far worse than in Canada,
Europe, Australia, New Zealand, and, especially, Japan:
-
“Do the wacky stuff at center. so that at home, out of site
out of mind. I could not see that in my house with 4
Grandkids. very Mental.” -
“I can’t self stick and pd was not a option
and gets me out of the house.” -
“i like being there in case something goes
wrong. and the fact that the clinic is only a five-minute
drive.”
Finally, instrumental concerns largely about supply
storage in the home scared some people away from PD:
-
“I’m paying the big bucks for my insurance I’m going
to have someone do it for me. And dint want my room to look
like a supply house.” -
“I don’t have space in my house .”
-
“I no longer had a lifestyle or living space
that would support peritoneal dialysis.” -
“It worked best for my life. My house is my
sanctuary and I don’t want a lot of medical stuff in My Sanctuary. So I
now go two days a week in clinic.”
Reasons for Choosing PD or
Home HD
-
FREEDOM & CONTROL
A theme that came through loud and clear was wanting to regain
control over a life that may have been derailed by a chronic illness
where all of the treatments are time-intensive and some have other
restrictions as well.
-
“I chose home hemodialysis because of the
freedom.” -
“Work. I can’t be missing work to come do dialysis. At least with
PD, I have the freedom of doing it
whenever I can.” -
“Initially I wanted to do PD but a couple major
abdominal surgeries put the kibosh on that. I had heard about
nocturnal hemodialysis years before starting dialysis
and talked with my nephrologist about it, but she told me it wasn’t safe
to do alone. When it came time I started in center because everyone
told me solo home hemo wasn’t safe. About 1.5 years in I asked the FA about doing self-care in
center and when she expressed excitement about that I told her I really
wanted to do home hemo, but lived alone. She thought I’d be the
ideal candidate for solo HHD and she talked the training nurse
in to training me. It’s been almost 8 years now.”and I have no
desire to go back in center. It’s a lot of work and there have
definitely been some challenges but I like making my own
schedule and changing it on the fly. I like being in charge of my
treatment.”
-
“Chose pd because I like to pack up
and travel whenever I wanted. I didn’t wanna mess with blood
& needles and I like the fact I can sleep through it and be done in
the morning.” -
“I chose to do PD after I was on hemo for 9
years. I definitely prefer PD. No blood, no needles, I do it at home,
no fluid restriction, I can eat as many potatoes, tomatoes, and
avocados as I want, no nurses or techs trying to rule my
treatments.” -
“Home Hemo because PD freaked me out. Doing
it at home because of awful experience with in-center
treatments.” -
“Did hemo for 5yrs (before getting a transplant) (after
transplanted kidney failed) i did hemo again for about a year but it
wasn’t the same because ZERO output so i tested pd and
after about 2 to 3 months of bumps it’s been great. Numbers are great
and I can do it at home. don’t have to notify the center 30 days
prior to vacation.” -
“Home hemo, my clinic is not close and I like being
on my own schedule.”
-
Better Treatment/Outcomes
Not everyone was unaware of the benefits of home therapies for
wellness and lifestyle. Some chose PD or home HD deliberately to have
the best chance of living well and fully.
-
(Home HD). “Reading, learning and implemented all new
and the best. Thanks to that I am 43 years on dialysis
in very good condition.” -
“Pd, I took for the freedom to work, hated
it. In center, to remove more toxins and feel better.
Home hemo, more freedom, can work with all the benefits
of in center, but no travel, less hours on the machine, less
pull.” -
“I wanted the best treatment there is, and
the benefits I receive. And my family is involved and don’t have to be
afraid of what’s happening. Nxstage Nocturnal Home Hemo for me
is the best out of them all.” -
“Nocturnal is best and easiest on
body.” -
“Nocturnal HHD because it gives us better lab work
and gives us no recovery time and our days and evenings
back.”
A Free Tool to
Match Options to Patient Values
If YOU had to choose a treatment for kidney failure, wouldn’t you
want a way to sort out what is most important to you—and then help to
match a treatment to what really matters? My Kidney Life
Plan is a decision aid—or treatment matcher—to do just
that. Developed to meet all of the International Patient Decision Aid
Standards (IPDAS) criteria, this tool is written at a 5th
grade reading level and includes evidence-based
information about transplant, seven types of dialysis,
and conservative management.
We recommend that My Kidney Life Plan be used FIRST,
to instill critical HOPE—BEFORE potentially scary detailed information
about modalities. The summary page can be added as an Advance
Directive to patient medical records, and helps guide more productive
conversations with clinicians. Using the tool may increase patient
willingness to attend CKD education classes and make an active,
informed choice that lets them live their best lives.
- The Renal Warrior Project. Join Now
- Source: https://homedialysis.org/news-and-research/blog/582-view-from-the-chair-why-did-you-choose-your-dialysis-option