Home Dialysis – The Human Touch
Each month Satellite Healthcare will revisit a person or topic to provide
an update for our readers on personal progress or new industry advancements.
The benefits of home dialysis and patient quality of life are topics always
worth revisiting and of growing importance in the world of nephrology.
Satellite Healthcare Chief Brigitte Schiller, MD, FACP, FASN, and Satellite
social worker Christen Perry, LCSW, recently shared their perspectives
on these two vital issues.
Home hemodialysis – though even today a relative rarity compared
with in-center hemodialysis – is proving its effectiveness not only
in managing renal disease, but in vastly improving quality of life and
ability to realize personal hopes and dreams.
Dr. Brigitte Schiller recently reached out to patients, nephrologists and
other caregivers in an
American Kidney Fund webinar: Humanizing Dialysis. Patient testimonials movingly illustrated the life-changing
freedom self-care at home can bring.
Social Work Today, Perry highlighted social vulnerabilities that can accompany “invisible”
chronic kidney disease, as friends and family members sometimes go astray
in relating to a serious illness that might show no outward signs.
Both emphasized that a positive sense of self, nurtured by individualized
care in a safe and loving environment, is key to the best possible quality of life.
Dr. Schiller said treatment, in conjunction with clinical science, must
be based on “how much do we allow our patients to live as normal
a life as possible.”
Yet, in-center hemodialysis continues to far outweigh home hemodialysis
– about 90 percent ICHD to 10 percent HHD – although patients
report much enhanced quality of life with in-home treatment.
Video testimonials underscored the power of home dialysis in enabling patients
to live their best lives:
- Annette’s overnight home hemodialysis routine takes about 45 minutes
a day to prepare and allows her to enjoy gardening, dancing, sci-fi movies
and genealogy. At 70, she has ambitious travel plans and now hopes to
at least match her mother’s current age of 90. She enjoys occasional
visits with her care team of dietitian, social worker, nurse and doctor.
- With in-center hemodialysis, Patrick says, “You were stuck there.
Your life was actually centered around that and it shouldn’t be.”
Now, “You hook up before you go to bed… you wake up, you
unhook. You’ve got the rest of the day to do exactly what you want
to do.” Patrick, whose blood pressure is now normal and whose joint
pain is gone, is on the transplant list and fully optimistic he will be
around for it.
- Young dad Elias has more time and energy at home with his family, without
exhausting trips to in-care: “It gives you part of your life back.”
“We all have stories and we all have dreams,” Dr. Schiller
said. Ultimately, the nephrologist and care team must “devise the
best care possible that fits that patient’s story.”
But even with success, snags can appear, when such comments as "You
don't look sick" rattle patients. Though well-meaning, it doesn’t
ring true for people still struggling with a life-threatening disease.
As Perry points out, team social workers play a crucial role in coping
strategies, centered on cultivating a strong sense of self-worth and purpose.
The patient learns, for example, to thank the off-center well-wisher while
suggesting a preferable comment for next time: "You look good. How
are you feeling?"
“Though individuals can feel their disease is a part of them, they
must not allow it to define who they are,” Perry writes. “Help
them accept their new circumstances, minimize the symptoms they can, and
pursue goals that provide a real sense of purpose to combat the moments
when they feel vulnerable.”