The following is an article from Kidney Times, a service of the Renal Support Network:
Returning Control to ESRD Patients Through Self-Care In-Center Hemodialysis EasyLink Access #: 103
By Susan H. Bray, MD, MBE, FACP
Self-care hemodialysis (HD) may be defined as a treatment modality that introduces the patient into an independent continuum of care by achieving greater knowledge of both the renal disease and the dialytic processes. It is a means by which patients can again achieve an active, meaningful lifestyle associated with a feeling of physical and emotional well-being.
Self-care HD is a mechanism of granting empowerment and control to patients who have entered Stage 5 chronic kidney disease (CKD), or end-stage renal disease (ESRD), and are beginning dialysis. The process of beginning a dialysis regimen has been very disempowering to many patients, and they often feel victimized and totally out of control due to the loss of their vital kidney function and the need to be kept alive by artificial means.
In the course of my many years of providing this treatment modality to qualified patients, I have developed a number of important points that should be helpful for those renal healthcare professionals who are considering initiating self-care HD in their own facilities.
Staff CommitmentOf primary importance is the dialysis facility staff. It is imperative that each staff member is totally committed to the concept of self-care in-center HD.
The teaching and provision of care needs to occur in a separate space, not intertwined with maintenance dialysis. That separate space can be an entire building, a different room in the facility, or even a different shift that's totally dedicated to self-care dialysis.
Educating the PatientIt is important to begin the patient's education on Day One of his or her outpatient dialysis treatment. If the patient is settled into a dialysis chair and is treated without first being educated, he or she very quickly settles into the "I am the patient, you take care of me" mentality. It is very difficult to give control to this person after the patient is settled into this way of thinking.
Beginning to educate the patient right away is important, even if the patient just sits, watches, and hears what the nurse or technician is doing and saying. As the patient becomes less uremic and more able to learn and retain what has been learned, he or she formally begins the education process. It is important that each staff member use similar teaching mechanisms and that they teach the aspects of dialysis in the same basic order. This method ensures both a continuity of teaching and retentive learning.
Expanding Role of the Social WorkerEvery member of the staff play key roles in providing and maintaining a successful in-center self-care HD training program. The social worker can do much more than try to get patient transportation or financial issues solved. The social worker can also help the patient in goal-setting, including returning to work or school or vocational training. The Office of Vocational Rehabilitation has been very helpful in getting some of our patients into training sessions and even into college, with the hope that the patient will return to the “work world” and therefore the “tax-paying world.”
The social worker can also be helpful to the person staying at home to maintain the household. It is important that patients return to their hobbies. If they loved to travel before, they can continue to do so, since dialysis can be made available almost anywhere in the world.
The "Eating Police?"Dietitians are not the "eating police!" Rather, they should serve as consultants and encourage patients to eat well and reasonably. The renal dietitian serves to educate patients about the risks of consuming potentially dangerous foods and fluids in excess, and to encourage them to control the fluids and foods that they ingest. Additionally, teaching patients to intravenously administer their own vitamin D analogs and erythropoietin (EPO) to control the effects of anemia can be very empowering. You would be amazed at how much in control patients feel when they can give themselves their own medications through the venous line!
The nurse-driven protocol includes educating patients on the mechanisms of action and possible interaction of the drugs they are taking and stressing the importance of adhering to taking the necessary drugs. We do not allow food to be eaten while the patient is dialyzing for a number of reasons, not the least of which is that it attracts critters. Also, the patient may be sending the blood flow to his or her gut to digest food,thereby allowing the blood pressure (BP) to drop. This, in turn, may cause the patient to cramp or become hypotensive (low BP).
From Cramping to Group NetworkingDuring dialysis, the fluid loss is limited to approximately one kilogram per hour, allowing the patient to avoid cramping. Patients are educated on how to check their dialyzers and to confirm that they have the correct dialyzer.Then the patient, along with the nurse or technician, signs the chart affirming that these steps have been taken. Laboratory values are reviewed and discussed with the patient, and a copy is given to him or her. The patient is taught how to manually check his or her vascular access daily.
As the patient progresses in knowledge, individual tests are given for each step in setting up the machine and the monitoring of dialysis. After the patient has passed a test, he or she moves to the next stage of the learning process. Patients are also encouraged to participate in network activities through either the Internet, support group meetings, or such organizations as the Renal Support Network, the American Association of Kidney Patients, and the National Kidney Foundation.
Barriers to Self-Care DialysisInitially, patients have many concerns about trying self-care HD. Over the years, these patients have been queried as to what some of those concerns are. The most common comment is that "no one ever told me about it." Therefore, I am convinced that continuous education is needed by both the medical care team and the patient, who is as an integral member of the team.
Other barriers to self-care HD include: .... Fear of self-cannulation (needle sticking).
.... Being comfortable after settling into a maintenance dialysis facility.
.... Poor self-confidence.
.... Poor dexterity.
.... Limited vision.
.... Fear of machinery.
.... Drug or alcohol addiction.
.... Mental instability.
"Ongoing Education"The time frame for educating the patient in setting up his or her own machine, self-cannulation, and monitoring the treatment is variable. Some people can get it done in a matter of weeks. For others, it can take months.
Some patients are in an "ongoing education" scenario. They move back and forth in the continuum, but they are trying and are involved in their care to the extent that they can be.
Self-Care CriteriaFacilities also need to fulfill certain criteria for self-care dialysis. These include:
.... Separate space exclusively for self-care.
.... Staff, including the medical director and nephrologists, who totally embrace the principles and expectations of self-care dialysis.
.... Dedicated teaching staff members.
.... Ongoing in-services for dialysis-related conditions.
The Desire to LearnThere are certain selection criteria that we have developed over the years. The single most important criterion is the patient's desire to learn. As long as someone has this desire, the staff can creatively work with that patient. It helps greatly if the patient has a stable medical condition, a well-functioning vascular access, basic manual dexterity, some vision, and an agreement to remain in compliance with the expectations of the nephrologist and other members of the renal healthcare team.
It would be beneficial if patients could begin their dialysis education before they reach Stage 5 CKD. This could go a long way toward allaying patient fears and clarifying what to expect when ESRD requiring dialysis or a kidney transplant is reached. Education leads to a sense of increased control and empowerment. It will also lead to better compliance and adherence with the dialysis and medication regimen. This, in turn, will pave the way to improved physical and emotional health and an overall better quality of life (QoL).
"A Much Lower Mortality Rate"It has been our experience that the emotional and physical support of the patient during the education process has led not only to a better QoL in general, but also to fewer hospitalizations and to a much lower annual mortality rate.
In our self-care dialysis facility, there are 46-50 patients who live in an inner-city environment and who have a mortality rate of approximately 2% per year. [Editor's note: This annual mortality rate is far below the 23% nationwide rate.] They also have a transplantation rate that is above the norm.
ConclusionPatients progressing through the stages of CKD can begin their education about kidney disease and dialysis before they become uremic. Self-care in-center HD can and should be proposed as a modality to all patients who voice an interest in learning about their disease and their care. Those who choose this modality should look forward to returning to a good QoL associated with return of a sense of control over their own healthcare.
It is also important to remember that the nephrology team helping to provide care and education for the patient includes not only the physician, nurse, patient care technician, social worker, dietitian, and other office staff members, but the patient him- or herself. Studies have shown that patients who take charge of their own healthcare live longer, healthier lives.
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About the Author
Susan H. Bray, MD, MBE, FACP, is Clinical Associate Professor of Medicine at Drexel University College of Medicine, Philadelphia, PA. She is also a practicing nephrologist, teaches renal fellows and medical students, and supports the self-care in-center hemodialysis concept. Bray founded the Chestnut Hill Dialysis Center in Philadelphia in 1980, which has been a beacon for self-care in-center and home dialysis.
Last Updated April 2007
http://kidneytimes.com/article.php?id=20070207125202
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