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How many patients could be on home HD?
“I wish I had an answer to that because I'm tired of answering that question” - Yogi Berra
My guess is > 20% (U.S., more in other countries) There is no point in arguing about exact number – we are so
far south of what is possible Where should we be recruiting patients?
Patients new to dialysis In-center patients Failing transplants PD dropouts
Barriers to patient recruitment
Urgent in-hospital catheter dialysis start and “commitment” to center HD pathway Acute event precipitating ESRD Unrecognized ESRD Poor medical judgment Patient in denial
Patients in no condition to make informed choice Patients not informed of choice Patients not adequately informed e.g., fear of needling but
buttonhole technique not explained Training center not available
Overcoming the barriers to recruitment
Early discussion of the options: it is never too early to start educating the patient
Ease in-center patients stepwise into home self-care Education in-center on setting up machine, self-cannulation etc Self-care in-center Home HD Home nocturnal HD
Keep asking about home as the patient continues in-center
Overcoming patient fears
Education The worst fear is fear of the unknown Gentle and patient and repeated education to explain these
very complex procedures Chance to talk to other patients Chance to see equipment and procedures live “You can observe a lot by just watching” – Yogi Berra Include appropriate family members and friends
Support Provide and emphasize ongoing support, with 24/7
coverage “You are not alone”
WellBound
Large scale “Centers of Excellence” model Dedicated, expert clinical staff; independent of in-center
hemodialysis Primary focus is on dialysis options education, wellness
programs and care coordination Support all self-care dialysis options
Peritoneal dialysis All FDA approved home hemodialysis systems
Collaborative partnership with nephrologists
CKD Patient Education
In the WellBound home training centers, patients receive ESRD options education either in groups or individually
Sessions last 2-3 hours, with RN, dietician and social worker; MD invited
Standardized PowerPoint presentation approved by medical directors
Sessions are at set regular times – patient does not need to make an appointment
Patients are encouraged to attend more than once if wish All options are presented, including conventional in-center HD,
PD, renal transplant, and the various regimens of home HD
How long should the training period be?
As long as it takes Christchurch, NZ
Median training time 35 days Training is a long-term investment
“An ounce of prevention is worth a pound of cure” Example
8 weeks to train Went home on HD Came back for further 2 weeks training within 3 months Now on therapy for > 2 years
Patient (and partner) selection
Safety is the first consideration Compliance is the second (but good luck predicting it!) Cannot consider the patient separately from the partner
(presuming there is one) The pair need to be considered as a work unit Someone, or some combination of the two, has to be
responsible for the entire procedure What are the absolute contraindications to home HD?
I don’t know Limited life expectancy: disseminated untreatable
malignancy?
Is this patient a candidate for home HD?
59 year old male ESRD due to multiple myeloma with light chain nephropathy Diabetes
Outcome
Died after 12.1 months No hospitalizations Remained at home throughout illness on daily home HD Family and patient certainly thought it was the best possible
outcome
We have to be able to say no
Nurses are precious – the most valuable asset a training center has is training time
The worst mistake is to train a patient who will never make it home
Second worst is to train a patient who will not have a worthwhile technique survival, either because of death or because of poor quality of life at home
The patient who is non-compliant/angry in-center
The situation needs to be assessed in a non-biased way Are they burnt out with rigid dialysis schedule? Are they frustrated in attempting to lead a normal life around
the rigid schedule? Are they underdialyzed and feeling lousy? Have they had problems e.g., bad sticks, crashing because of
poor treatment? The anger may be justified
Patient referrals
Doctors are encouraged to send all patients, not just those thought suitable for home dialysis
No nephrologist has comparable time to discuss dialysis options and other issues such as access
Doctors may believe patients have specific contraindications to one or other form of therapy: may be relative, may be temporary
Patients have a right to know of all modalities Patient choice may be very different from doctor’s bias Patient may change decision after hearing class and talking to
other patients
What do patients choose, given all the options?
Up until September 30, 2006, 1,020 patients were given options education in the WellBound centers. Of these, 46% chose a home therapy 54% chose in-center HD
As of September 30, 2006, 385 patients were being treated within WellBound
81% (312) on PD 19% (73) on HHD
In-center Hemodialysis
54% Chose in-center hemo
Primary Reasons: Fear of performing self-care No helper or support at home Physician said it would be best Lack of space at home for supplies or equipment
Why do patients choosing home choose PD?
80% chose PD
Primary reasons 82% stated “freedom” 6% stated “easy to do” 2% stated “fear of needles and/or blood”
Other reasons: Distance from center Desire for control over their care Wanted a treatment that provided more of a steady
state Family members’ input
Home HD
Primary reasons for choosing home HD: Dissatisfied with in-center care and/or outcomes PD drop-outs
Most common choice is short daily After 18 – 24 months some are switching to nocturnal Only 9 chose HHD as a first modality option
Allow a full menu of choices of home HD regimens
82% (60) on Short Daily 48: 6 days/week 6: 5 days/week 2: 4 days/week 4: every other day
18% (13) on Nocturnal 9: 6 nights/week 1: 5 nights/week 1: 4 nights/week 2: every other night
Access
Best access is an AV fistula with buttonhole (same site) technique
2 serious Staph aureus septicemias in young males – need to emphasize skin prep and sterile technique
Patient retention
Partner needs to be treated like a living-related donor
Full understanding of what they are committing to
Chance to say no in private
Patients need to make an informed choice
Do not want to spend time training only to have them want to switch
Need to understand long-term commitment to follow-up, record-keeping etc
Final thoughts…
Conventional 3/week dialysis is not optimal dialysis and maybe not even adequate dialysis
So we should stop bullying the patients about their “non-compliance”
It is our fault, not theirs, that phosphate is high, that BP is high, that weight gain is high, etc, etc
We need to get as many patients as possible on daily dialysis and therefore as many as possible on home dialysis
A final final thought….
“The future ain't what it used to be” – Yogi Berra
