Hi, I am new to this page and group. I am specifically interested in any studies showing the mortality rate of Solo HHD patients vs HHD with a care partner. My initial search has yielded no results. Has anyone read about a study like this? I know dialysis companies are trying to make Solo HHD appealing but the patients who are completely independent seem to have a higher rate of death during treatment than those who have assistance. Any help or opinions would be greatly appreciated.
LJ
I am not aware of studies comparing home HD with and without a care partner. I suspect those who choose to do home HD without a partner do so because they don’t have anyone or anyone willing to be their partner partner and can’t afford to pay someone to help them (Medicare doesn’t cover the cost of a partner). Some worry about burdening a spouse, family member or friend with their home dialysis. The burden can be reduced if the patient is trained to independently do his/her dialysis and the care partner is just there to help with limited things. The risks with home HD are less when a home HD patient does dialysis longer or more often and they run a lower blood flow rate and remove less fluid during each treatment. These two differences from in-center HD reduce the risk of low BP. There is a risk of needle dislodgement at home or in-center so secure taping is important. Some clinics require patients to use a monitor that will detect leaking from the dialysis access. Other clinics have remote monitoring. All of these things reduce the risks.
I’ve heard from patients who do home HD without a partner that they do all they can to reduce their risks and know when and who to call if needed. They They choose to accept the risk to have control over when and where they do dialysis where they can make the rules about eating or visitors.
Here’s a blog that was written a few years ago. It mentions non-US countries where patients doing home HD are encouraged to be self-sufficient and not need a partner. Check out the references and comments.
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LJDoe, as Beth correctly points out, there are no studies on this yet. Solo home HD is still too new for any program to have large enough numbers to even try to look. Survival studies require BIG numbers. That will take years.
But, I also think you are making the wrong comparison.
Rather than compare solo home HD to partnered home HD, the correct comparison would be standard in-center HD to solo home HD.
Of course, we don’t have those data, either, and they will also take years to accumulate. That said, capable adults have the right to decide what treatment suits their values and quality of life best–even if that might mean that they don’t live as long. The folks most afraid of solo home HD are, I think, the attorneys for large dialysis organizations. That’s what legal releases are for.
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Thank you for your responses. I am concerned about the safety and liability of solo hd. I know hhd has improved outcomes… but at what cost? We live in a society where we have the world at our finger tips yet people do not believe you when you explain the risks. Then they want to sue when something bad happens. I thought if I could site a study it would help. I appeciate both of you taking time to respond.
LJ
Do you know if there have been lawsuits filed by families of deceased patients who died while doing home hemodialysis alone? As Dori said, dialysis corporations’ lawyers may be so fearful that patients have been prevented from doing solo home HD. The question I’d ask is have any lawsuits been filed when the patient had signed a waiver of liability? What was the result? I’ve heard of suits against clinics/corporations for poor care provided to in-center patients, but haven’t heard of legal cases filed against corporations/clinics for problems when a trained patient does home HD whether solo or with a partner.
I haven’t thought of it from that perspective. I will check into that. It’s concerning how they are pushing solo for known people who already do not follow doctors orders or instructions from the nurse or tech. And with the amount of work involved i.e. treatment, cannulation, cycler swaps, drawing/processing/shipping labs, maintenance, documention, etc it is prohibitive, especially in just 6 weeks. It takes months to train an in-center tech! The state surveyors scrutinize to the minutiae. What nurse wants to risk having the program/clinic being cited or losing their license? We live in a litigious society. The whole subject is overwhelming. I just needed some perspective from outside of my bubble. Thank you for your response.
LJ
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It seems overwhelming what patients are asked to learn and do, but if the training nurse has experience in teaching HHD and understands how to teach adults with different learning styles, it can and has been done since the 1960s. Medicare allows 25 training sessions for HD and many patients learn what they need to know in that time or less. Keep in mind that a tech is learning how to do a job while a patient is learning how to save their life and live with as high quality as possible. I think that makes a huge difference.
You might want to join Home Dialysis Central’s Facebook group to get an idea of how well trained most of the patients are who are doing home HD. It’s a closed group and you have to answer a few questions to be admitted. All I ask is that you keep an open mind.
Hi LJDoe,
I have been on solo HHD Nocturnal for 14 years now here in Australia without any major problems . During the training period my wife “carer” came in for an oversight of operations and shown a handful of procedures in case of any problems but the emphasis is put on independent dialysis. I never wanted my wife to be a carer and prefer to stay as her husband . The training provides all you need for any eventuality and the training period is when you are likely to make the novice errors so are overseen by staff anyway. Of course it’s a bit nerve wracking when left to your own devices for a couple of weeks but time soon sorts that out ; I really don’t give it a second thought now . The main issues for solo flying are : going flat due to removal of too much fluid ; solved by ( as Beth Witten states) doing longer more frequent sessions and the fear of cannulas falling out ; solved by taping carefully . As time passes the operation of the machines becomes second nature so can really see no requirement for a “Care” partner with the exception of having a fear of self cannulating ; solved by decent training process.
I wish you luck and hope you can enjoy a continuing “Normal” relationship with your partner.
Thank you Nelson​:blush:
Do you know if there have been lawsuits filed by families of deceased patients who died while doing home hemodialysis alone?
There have been lawsuits and there are attorneys who advertise that they will represent people who have been harmed. You can search for “dialysis lawsuits” to find information. Here’s a website where you can find cases.
There needs to be clear and convincing evidence of wrongdoing and/or failure to follow regulations and standards of practice. Family members have to find a plaintiff’s attorney who specializes in medical malpractice who is willing to take a case that could be costly to fight. Lawyers representing a dialysis provider have almost unlimited funds to defend their client.