Traditional Dialysis vs. Transitional Care for Urgent Starts

Imagine that you have thought of yourself as being in good health. Maybe you have a family history of diabetes or high blood pressure, but you’ve had no signs that you have either of these conditions. You’ve mostly seen a doctor when you’ve been sick, and it’s been a while since you had your blood tested. You go to your doctor for the flu and find out that you have kidney failure. You meet a new doctor—a nephrologist—who tells you that you need to start dialysis urgently to live. You know nothing about kidney failure or treatment options and there’s no time to prepare or teach you.

You’re scared. How will kidney failure affect your life, your family, your job, the trip you planned, the things you like to do? You have surgery right away to place a hemodialysis catheter for urgent HD. When you’re released from the hospital, you’re referred to the dialysis clinic where the nephrologist practices. The discharge papers tell you who to call to get your schedule. Luckily, the clinic is not far from where you live and work and you have a car.

Traditional Dialysis Care

Background:

Traditional dialysis clinics operate three days a week—Monday, Wednesday and Friday or Tuesday, Thursday and Saturday. Clinics have 2 to 3 daytime shifts, some have shifts that start after 5 p.m., and a few offer nocturnal dialysis for 6 to 8 hours while patients sleep. Most clinics provide full care; some offer self-care where patients may set up their machines, run and document their dialysis sessions. Most clinics are for profit; some are non-profit.

Your experience:

You call the clinic and are told that it’s almost full. The only time available for you is 11 a.m. You’re scheduled for 3.5 hours and are told that you need to allow time after dialysis before you can drive safely home. You can’t have your spouse with you due to privacy issues. You have a full-time job, but as long as you’re on that schedule you can only work in the morning on your dialysis days. You have to ask for leave under the Family and Medical Leave Act—so, your job is protected, but you aren’t paid, and have to pay 100% of your health plan premium. You are under a lot of stress.

When you arrive at the clinic, you sign forms and are taken back to a room filled with people, some of whom are older and look sickly. A few younger ones are reading or listening to music or watching TV with earphones. You weigh in. A nurse assesses you, prepares your catheter for dialysis, and hooks you up to the dialysis machine. You watch your blood leave your body through the lines to the dialyzer and return. You feel chilled, and the blanket you brought doesn’t offer much relief. Every 30 minutes a technician comes by, looks at your machine, asks how you’re feeling, and records your blood pressure. Now and then a machine alarms and a technician mutes it. When your machine alarms, you worry what it means, and it scares you.

The clock moves slowly. The chair that started out feeling OK now is uncomfortable. The social worker and dietitian come by to introduce themselves. They say they’ll be back to talk with you another day; they don’t want to bother you during your first treatment. You have a bad cramp in your calf, and you feel lightheaded and nauseated. The technician checks your blood pressure and gives you saline. Finally, it’s time to get off dialysis. You feel fuzzy headed and a little dizzy. The technician checks your BP, pulse and temperature and walks you to the scale to weigh. You’re told to wait in the waiting room until you feel OK. When you think you’re OK to drive, you leave for home. Once at home you’re too tired to eat and you take a nap.

It’s the same routine three days a week. The nurse talks with you about your medications, any symptoms you’re having before, during and after dialysis. The dietitian talks with you about how much you can drink and what to eat. She asks what foods you like to see how they fit into your diet. She tells you that she’ll be sharing your blood test results with you and will make suggestions to keep them in range. The social worker talks with you about your health and mental health background, education, your support system, your job, and financial concerns. He tells you there are sources of help and offers to help you apply if you need to. He asks how you’re coping and suggests ways to help you cope. Along the way different staff talk with you about PD and home HD as well as transplant and they give you brochures to read.

Although you were grateful at first that dialysis could keep you alive, now you feel overwhelmed and unprepared to live the rest of your life dependent on dialysis:

• You worry about how you’ll be able to return to work when your leave is over if you have to miss work most of three days during each work week.

• You worry that you won’t be able to pay your bills if you take Social Security Disability.

• You feel anxious and depressed, but put on a “happy face” to hide your feelings. You don’t tell anyone how you feel because all of the staff seem very busy. You feel like you’re in a deep, dark hole with no light at the end of the tunnel.

• Your doctor and the staff ask if you want to try PD, home HD, or transplant? You want to try for a transplant to get back to a normal life, but don’t know if PD or home HD might fit better with your lifestyle and values. It’s scary to think about taking charge of your dialysis. You think it’s safer to stay put where professionals can take care of you.

• Your clinic doesn’t have an evening or nocturnal shift so you ask for the latest shift so you can work. The nurse manager adds you to the waiting list for that shift.

Transitional Care Unit (TCU)

Background:

TCUs provide 1 to 2 months of a standardized orientation program in a separate area with a small number of machines and patients. With better staffing ratios, more frequent dialysis, and a schedule of what will be offered to a patient each week, a TCU allows new patients to become stable with gentle dialysis, start to cope with dialysis, and learn about their options, nutrition, and how to pay for treatment. They get help to keep their jobs or are referred to vocational rehabilitation for help to find a new job. Families can sit with patients during dialysis to support and learn. Patients in a TCU get more one-on-one nursing, nutritional, psychosocial support as they consider different treatment options. TCUs often have patient navigators who help with referrals for surgery and transplant evaluation and they get mentoring from patients who can talk with them about their experience with different types of dialysis and transplant.

Your experience:

When you call the clinic, you are told that for the first month you’ll do your dialysis in a small area with just a few other patients. They tell you this area is just for people like you who are new to dialysis. In this area, the dialysis machines are just like the ones people use for home HD. You will do dialysis 4 days a week on Monday, Tuesday, Thursday, and Friday for 2 to 3.5 hours based on what your doctor prescribes for your unique needs. They ask what time works best for you. You ask for an early time so you can go to work after. They schedule you for 6:30 a.m. At worst you’ll be leaving by 10 a.m., so with flextime, you don’t need to miss much work if you feel well enough after dialysis. If not, you ask to switch to a late afternoon shift, so you can work before dialysis—and the clinic makes that happen because they understand how important keeping a job is for you, your family, the clinic, and society at large.

During that first month, you’re anxious and depressed, but have one-on-one time with dialysis staff who don’t seem rushed. You get to know other TCU patients, and you and they support each other. The social worker spends several hours each week in the TCU talking with you and helping everyone overcome the shock of kidney failure. Your family can sit with you during dialysis and learn about dialysis at the same time you are. You see that the machine doesn’t look too hard to set up and operate. Staff tell you what they’re doing as they do it. They use your HD catheter and encourage you to get a fistula or graft or consider PD. They have you talk with patients on home HD and PD as well as a patient who had a transplant.

You’re starting to feel more confident and hopeful. You can see a benefit to being in charge of your own dialysis and being able to schedule dialysis when around work and family activities. Your family knows more about dialysis and is more aware of what their role might be if you choose home dialysis and they may be more willing to help you if you choose to do PD or home HD. You ask when you could start home training and you’re able to move right from the TCU into a home training program. You can keep your job, your health plan from work, and if you want to, you can get Medicare from Month 1. You are a little anxious about the future, but you have confidence that you can do it with support from your clinic.

TCU History and Outcomes

The first TCU (called “dialysis orientation unit”) was at Northwest Kidney Centers (NKC) in the early 1980s. Its goals were to encourage self-care, to rehabilitate patients and promote a higher quality of life. The TCU transitioned 62% into home training, 24% into self-care training, and only 10% transitioned to in-center dialysis. As more complex patients started dialysis in the 1990s, NKC still had 25% of its TCU patients transitioning to home training.

Canada has several clinics with “home first” programs. At Humber River Hospital, 56% of TCU participants and 50% of urgent start TCU participants transitioned to home dialysis, vs. 21% of TCU nonparticipants.¹

Satellite Dialysis has an Optimal Transitions program that includes 4 components during the first month of dialysis:

1. Life Plan: Getting to know each patient to help him/her make the best choice of treatment for them.

2. Education: Teaching about treatment options.

3. Stabilization: Dialyzing 5 days a week for 1-4 weeks to help patients feel well enough to make an informed treatment decision.

4. Self-care: Experience with PD and home HD to see what it’s like to reduce fear and help to motivate the patient to choose a home option.

Metrics collected include percent of patients choosing home dialysis, reduction in hospital admissions/readmissions at 90 days and 1 year, improvement in quality of life (working patients), increasing how many patients are educated about all options, increasing the number of patients with a dialysis plan individualized to them, and increasing the transplant rate.²

UVA Dialysis started a Transitional Start Unit about a year ago.

1. During the first week, the staff get to know the patient. The social worker helps the shocked patient cope with kidney disease and dialysis and answers questions.

2. The second and third week, the staff talk with the patient about options

3. The last week, staff work with the patient on a plan to transition to the treatment of choice.³

The home dialysis machine used by TCUs is the NxStage. That company stated on its website that of the 60 patients who graduated from 10 TCUs between October 2018 and April 2019, 70% chose home dialysis—25% chose home HD and 45% chose PD. Patients stated their reasons as greater control over dialysis and their schedules, health outcomes education, less driving time to dialysis, and the ability to travel with their equipment.⁴

Conclusion:

You’ve read a little about TCUs, how they differ from traditional in-center programs, some outcomes, and why TCU participating patients chose a home treatment. Consider—which way would you want to start dialysis? With the Trump Administration’s push for more patients on home dialysis and with transplants, TCUs look like an innovative way to provide the education, support and empowerment needed to help more new patients consider taking on the challenge and responsibility of doing dialysis at home and possibly improve outcomes at the same time. I challenge more dialysis providers to start a transitional care unit.