- Email: [email protected]
Home dialysis: Lessons in patient education
pATiovr~ducMo~ ANd COlMEtiNq
ELSEVIER
Patient Education and Counseling 26 (1995) 17-24
Home dialysis: Lessons in patient education Rosemarie Royal
Free Hospital.
Department
of’ Nephrology
A. Baillod
and Transplaniation,
Pond Street,
London
N W3 2QG.
UK
Abstract
The conceptof home haemodialysisfor the regular treatment of renal failure wasfirst put into practice in 1964,30 yearsago. It proved extremely successful. This paper describesthe epidemiologyof renal failure, the reasonsfor home haemodialysisand the educational role necessaryto ensureits success.Continuous ambulatory peritoneal dialysis (CAPD), or autonomousdialysis,is a self-careperitonealtreatment which developedafter 1978for a wider agerange of patients. Its rapid expansionneededa professionalapproachto patient education.Also discussed are the problems patients encounter with conceptual skills, as opposedto the easy acquirementof practical skills and the paper demonstrateshow persons,without formal medicaland nursing education, can mastercomplex treatment skills, Key,rou&: Haemodialysis;Renal failure; CAPD
1. Introduction Dialysis is a process during which the blood and body tissues of the patient are made clean of waste. It replaces the function of diseased kidneys and is one of the treatments available for chronic irreversible renal failure. The treatment has taken place in the home since 1964. This paper describes the important contribution patient education made to the success of dialysis treatment and the lessons to be learned from this very complex treatment. The normal kidney excretes waste products and maintains the body’s water, electrolyte and acid base balance. It also produces hormones which help regulate blood pressure, production of red blood cells and bone physiology. Normal kidneys have a large reserve and can be severely damaged before patients and doctors are aware of any
problem. Chronic renal failure (CRF) due to congenital or acquired disease may be irreversible and progress to end stage renal failure (ESRF), at which point the function of the kidney is reduced to 10% or less of normal. At under 5% of normal function death will occur, if replacement treatment is not introduced. 2. Epidemiology The incidence of ESRF increases with age. In children, where the commonest causes are congenital and familial, the incidence is four new patients per million population per year; in the elderly it can be 100 new patients per million population per year. Glomerulo-nephritis is the commonest cause of ESRF and its incidence increases with age, becoming a significant cause in adolescents and adults. Diabetes, renovascular atherosclerosis
0738-3991/95/$09.50 0 1995 Elsevier Science Ireland Ltd. All rights reserved SSDI 0738-3991(95)00721-B
18
R.A. Baillod / Patient Educ. Cows. 26 (1995) 17-24
and hypertension cause substantial increases in ESRF in the fifth and later decades of life [l-3]. However, 30% of patients remain without a specific diagnosis. Some races have a higher incidence of ESRF. In the USA, the number of people from negro origins receiving dialysis treatment is proportionally higher than their percentage in the general population [4]. In the areas of the United Kingdom where large communities of Asian people have settled, there has been noted an increased need for dialysis due to hypertension and diabetes [5&l. 3. Treatment A kidney transplant is regarded as the best method of renal replacement. However, inspite of significant advances in tissue grafting, it has become more difficult to provide enough transplants because the gap between demand and supply of kidneys has widened. For example, in the United Kingdom and Ireland, 1858 cadaver kidneys were donated in 1993, but the waiting list for kidneys has continued to rise and, in January 1994, it was 4848 patients [7]. Therefore, dialysis remains the most important treatment for the majority of patients. Acute renal failure was successfully treated by haemodialysis in 1945 and peritoneal dialysis in 1946, but difficulties in access, especially to the blood stream, prevented its regular use for ESRF until 1960. The first successful chronic renal failure patient started his treatment in 1961. He lived a further 10 years on regular dialysis treatment
PI.
There are two methods of dialysis. The first and most commonly used is haemodialysis, in which blood is taken outside of the body, and whilst separated by a semi-permeable membrane, the artificial kidney known as the dialyser, the blood is washed with a physiological solution known as the dialysate. The second method, called peritoneal dialysis is, in part, a reversal of the haemodialysis procedure, as the physiological washing solution is introduced into the patient’s abdominal cavity and the semi-permeable membrane, the peritoneum, separates the patient’s blood as it is washed within the body.
Haemodialysis and peritoneal dialysis were developed simultaneously in the early 1960s. Haemodialysis was more commonly used because peritoneal dialysis is less efficient and was initially, technically unsatisfactory and expensive. When the treatment concept changed from intermittent to continuous peritoneal dialysis in 1978 [9], the efficiency improved and the cost was reduced. Continuous ambulatory peritoneal dialysis (CAPD), or autonomous dialysis as it is known in some countries, has allowed a significant increase in the number of patients who can be dialysed at home. It is especially beneficial for infants, children and the elderly. However, because of potential complications, it cannot stand alone and remains dependent on back up haemodialysis. Whereas a successful kidney transplant may restore normal function, inspite of great advances the dialysis procedure at its best will only provide the equivalent of 15% of normal kidney function. As a result, medical complications still occur and life-style is significantly restricted. 4. Reasons for home haemodialysis When by 1964 dialysis for ESRF proved to be a successful treatment, the potential overwhelming costs of extending its availability became clearly apparent. Apart from finance, the other limiting factors were lack of trained nephrologists, staff and space within the hospital. It was therefore thought that to cope with the increasing demand, the treatment would have to be done in the home by the relatives instead of doctors. In 1964, two units in the USA and my unit at the Royal Free Hospital, London, simultaneously started home dialysis [IO-121. As anticipated, it solved a number of problems. For example, the home gave the space for the equipment and the family and patients were the staff. Since there were very few dialysis-trained staff, it made little difference if teaching was directed towards inexperienced staff or the patients and family; the latter were obviously more motivated if the alternative was death. The doctors anticipated that home dialysis might give better medical rehabilitation and encourage a higher degree of independence. They found this to be true. Doctors also envis-
R.A.
Bailiod
/ Patient
Educ.
aged that in the future patients would be able to do their own dialysis treatment, in the same way that diabetics give their own insulin. Home haemodialysis attracted considerable interest and criticism. It was thought by many to be reckless and inhumane. Critics were eventually proved wrong by the good results that were obtained [13]. This success depended on two important aspects. Firstly, technical advances. In order to do the treatment safely the equipment had to be ‘fail safe’, especially as the treatment was often done overnight. Equipment developed rapidly and many of the features we see and take for granted today, such as alarm limits and back-up monitors on all types of medical equipment, were initially developed for the complicated treatment of home haemodialysis in 1964. The second factor was the outstanding contribution of education which enabled patients and relatives to carry out a treatment previously restricted to doctors and nurses. 5. Role of education in treatment and success of home dialysis
The role of education is to inform patients about the nature of their disease and its potential complications. Since dialysis is life sustaining, failure to educate the patient can easily result in death. Patients need to comprehend all the aspects of their management and treatment, including diet, dialysis and medication. It is necessary for patients to learn specific concepts about their illness in addition to practical skills. The latter, although complex and numerous, are easier to learn and understand than the theoretical aspects, These concepts are common to both haemodialysis and CAPD. 5.1. Concepts and theory Concept 1. The first concept is that dialysis is not a cure - it is a replacement treatment. This may never be totally accepted or understood and patients still retain hopes, even 20 years after starting dialysis, that their kidneys will get better. Concept 2. Patients need to realise that dialysis, diet and medication have equal importance for sustainable good health. It is not sufficient for them to comply with taking their medication.
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19
Concept 3. The most difficult concept for patients and many health care workers to understand is the relationship of fluid balance to body weight. Each patient in a steady metabolic state has an ideal body weight which is determined by clinical assessment. This weight varies throughout the life of a dialysis patient, as patients in positive nutritional balance may gain flesh weight, whilst during an intercurrent illness their body or dry weight may fall. As dialysis patients pass little or no urine, they retain fluid if their fluid intake exceeds their losses. To assess the fluid retained, the patient is weighed and each kg gained is considered to be 1 1 of excess water. The water is removed by ultrafiltration as part of the dialysis process and as a result the patient can be returned to their ideal body weight. In haemodialysis, the patient dialyses three times each week, therefore adjustment of weight takes place every 2-3 days, but in CAPD the adjustment is daily. Patients are asked to restrict their fluid intake to minimise the acute weight gains between dialysis. One of the difficulties encountered is that patients often believe these changes in weight are due to food rather than the fluids, so they reduce their food intake resulting in true body weight loss. Even when adjusted back to the previous ideal body weight, the patient remains water overloaded. In particular, patients often find it difficult to identify and accept the weight loss which occurs during an intercurrent illness. For most patients, the choice of their weight seems entirely ‘mythical and arbitrary’. Concept 4. A great misconception is that you only break your diet if you eat food which is not allowed. However, the diet is balanced to give high energy and good nutrition and failure to eat the whole diet is bad for the patient and is equivalent to ‘breaking the diet’. Large changes in biochemistry and a too rapid removal of fluid makes the patient feel unwell. Sensible patients learn that it is wise to keep to their diet and fluid restrictions. Renal patients feel thirsty and this is significantly worsened by salt in their food. Although patients may not add salt to their food, they often take it inadvertently, especially if they eat commercially available prepared foods. Huge fluid weight gains, due to uncontrol-
20
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lable thirst, can be life-threatening, as it causes acute fluid collection in their lungs. Patients are taught very early in their training that potassium kills by stopping the heart. Patients have to learn the normal and abnormally high and dangerous levels of blood potassium. Their diet book and lessons are very detailed regarding foods containing potassium. Concept 5. Much of the medication prescribed for dialysis patients appear to them as having no obvious or immediate medical benefits and some medicines are unpleasant to take. For other patients, the number of tablets and the timing are very daunting. If patients are to comply and benefit from their treatment, it is very important to educate them on the reasons for the medication. For example, hypotensive drugs taken before a dialysis session will result in a dangerous fall in blood pressure during the dialysis treatment and therefore patients have to learn to omit the dose before dialysis. Patients need to be able to identify and name each medication and its action. Some medication is varied frequently according to blood results, therefore patients need to carry with them a treatment card on which alterations can be added. 5.2. Practical
skills of home haemodialysis
In the context of this congress ‘Patient education 2000’, home haemodialysis, even though it has been practised now for over 30 years, remains amazing. It is obviously a very complicated treatment and in many ways is little removed from intensive care therapy. Because home treatment was necessary, methods have been devised to allow it to happen. The following outlines the basic skills required: Learning how to use equipment. Today’s equipment is very well designed and automated. With a good routine, learning the mechanics is a minimal part of the patients’ education. They can learn it either by explanation and understanding, or by following a strict protocol. I recommend that patients develop their own training manuals using their own words to ensure that they understand. Manual dexterity and comprehension are necessary to learn how to unwrap and handle sterile items without contaminating them. This is not
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difficult, as workers in pharmaceutical and similar industries throughout the world and often with little education, do this routinely. Handling items such as syringes and sterile fluids becomes automatic and patients are able to adapt their skills with training. As part of the ‘setting up’ for dialysis, patients have to make nursing observations such as pulse, temperature, blood pressure and weight. Accessing the blood circulation. Patients have to access the blood stream in order to circulate blood through the equipment. Without doubt, the most stressful and difficult skill the patient has to acquire is how to insert large-bore needles into artificially dilated veins in their forearms. The veins become dilated following the surgical construction of an arteriovenous fistula. Incredibly, almost all patients will learn to do this, although a few will rely on help. In rare situations, if patients cannot tolerate needles, an alternative form of blood access has to be devised. Controlling the dialysis. The dialysis treatment lasts 3-5 h, during which time the treatment has to be observed to be taking place and that the planned goals of the dialysis are achieved without incident. This is usually done by strict adherence to protocol and detection of faults before starting treatment. In training patients, it is important to ensure that they will seek advice at any noted deviation from their normal routine, however minor it may seem. During the dialysis, patients control the process, react to and interpret alarms and adjust the equipment. In the haemodialysis treatment, the membrane pressures are increased to remove water by ultrafiltration. The procedure needs to be carefully monitored as there is the possibility of leaving patients fluid overloaded, or alternatively, causing circulatory collapse if too much fluid is removed. In the past, the monitoring was done by measuring the blood pressure and weighing the patient at hourly intervals and then adjusting the pressure across the dialysis membrane to increase or reduce their rate of water removal. Fortunately, the current equipment is extremely accurate and reliable and the patient is now only required to dial in at the beginning of the dialysis the volume of water they wish to remove. Patients are taught to give themselves
R.A.
Bail od
intravenous drugs during the treatment excorporeal blood stream.
I Paiieni
Educ.
via the
6. Success or failure of home haemodialysis Success in home haemodialysis is dependent on the quality of teaching and the patient’s willingness to do the treatment. Most patients are very anxious but overcome this with time. Unwilling patients will sabotage the treatment regardless of all efforts made by the care workers. Failure will also occur if the blood access and training in this area is less than ideal. The anxiety created by not being able to insert needles is devastating. The equipment has to be in perfect working order and well maintained to be reliable. One would never consider home haemodialysis for patients with serious medical problems such as ischaemic heart disease which could be exacerbated during the dialysis treatment. 7. Practical
skills for CAPD
CAPD is an ideal home-based dialysis treatment. For children and the elderly it gives a more stable day-to-day biochemistry, fluid balance and cardiac circulation. In brief, the practical skills of CAPD are to make the basic nursing observations of pulse, blood pressure and weight on a daily basis and to make exchanges of peritoneal fluid. To do this, the patient is required to open and connect two sides of a specially designed connecting system without contamination which would lead to peritonitis. Whilst the technical skills are few and less complex compared to haemodialysis, it is necessary to appreciate the anxiety and weariness that results from the unceasing discipline of CAPD, which needs extremely high standards of sterility far in excess of the standards required for haemodialysis. The exchange is done four times a day, and therefore amounts to 1500 times per year. The high standard must be maintained indefinitely. By following a strict protocol which defines the order in which hand washing, opening of items, connection and disconnection occurs, the patient can achieve a sterile exchange of the bags of peritoneal fluid. Peritonitis is caused by contamination of the peritoneal fluid either by
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21
accident or carelessness. The design of the equipment, especially the connectors, has improved in the past decade and this has significantly reduced the possibility of contamination during the exchanges. No fool-proof method has yet been designed and patients need to recognise that regardless of their infinite care, it is almost inevitable that a frequent repeated procedure has the possibility of an accidental error. Unfortunately, patients find it difficult to appreciate that they cannot see bacteria and frequently make the comment that ‘everything looked clean’. Learning to see and recognise an error in their procedure and responding by reporting it, is difficult to teach and accept. Regardless of embarrassment or inconvenience, patients must report accidents immediately as it is immensely important that patients take appropriate antibiotic treatment immediately in order to arrest bacterial growth before peritonitis occurs. Patients, in their efforts to help the busy staff, often try to think out problems for themselves, especially when they have ‘apparently’ been given so much responsibility. However, in new situations their decisions are frequently wrong, so patients are taught that they are not allowed ‘to think’ only to seek advice and discussion from trained CAPD staff. In peritoneal dialysis, patients are able to remove fluid by changing their dialysis fluid to higher osmotic strengths to increase ultrafiltration. The techniques of fluid removal are quickly appreciated and learnt by patients. The use of higher osmotic fluids tend to make the function of the peritoneum deteriorate, so patients have to be guided into managing some of their fluid balance by restricting their fluid intake. 8. Success and failure of CAPD Parents are wonderful with the treatment of their children as they have the benefit of being physically and mentally fit and, in addition, they are highly committed to their child’s care. They are always reliable regarding reporting errors. Adolescent patients are capable of doing all the mechanical skills and always learn quicker than their parents. However, they do not have the
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R.A. Baillod / Patient Educ. Couns. 26 (1995) 17-24
The development of dialysis in the 60s was a shared experience between the staff and patients. Everyone was obliged to teach and share their knowledge. New nurses and doctors had to accept that existing patients knew more than they did about the practical procedure of haemodialysis. It is from this historical background that the teaching of patients in dialysis units is considered the automatic thing to do. There is so much for everyone to learn and patients are with staff on a regular basis for long periods. The United Kingdom dialysis nurses, as part of their official qualification course for dialysis, have to learn to communicate and teach patients and other new staff. All health care workers in the field of dialysis recognise the need to educate patients to prevent loss of life and medical complications. The teaching is done with skill and enthusiasm. However, it is important to note that there is a difference between teaching and actually learning and staff have to be able to assesshow much a patient has learnt. For myself, teaching has been the basis of my clinical life for the past 30 years, so it is difficult for me to consider that in other areas of medicine, education of the patient is not considered one of the most essential aspects of their clinical management.
as sick patients learn very little. In addition, patients are often overwhelmed at first, for they cannot believe what is happening to them, even if dialysis treatment has been discussed many times prior to their needing treatment. For many they see it as a loss of their life and they suffer a period of bereavement. Haemodialysis patients are seen three times a week and CAPD patients daily, during the training period. For both treatments, an initial training period in the hospital is usual. However, the major training achievements are made at home when the patient is settled with their equipment arranged to suit their needs and they are removed from the distractions of other patients. Dialysis training is very comprehensive and is rather like going back to school. The patients make notes and keep records of their treatment and nursing observations. Technical manuals on the operation of equipment are used and booklets and videos on various aspects are also available. In fact, manufacturers of equipment are keen to produce teaching aids. No rigid training period of programme can be imposed, especially for haemodialysis as the subject matter is unusual and the patients ability so varied. Physical fitness and age rather than educational background influences the learning ability. Younger patients always learn much faster than older patients. Illiterate patients compensate in other ways and their willingness to learn overcomes their lack of education. More importantly, there is the need to use appropriate language for the individual patient and be able to recognise when inappropriate words are chosen for explanation. Many patients have limited vocabulary in their own language and elaborate words confuse them. Technical skills are not language dependent, as patients learn by observation and practise. To understand and consolidate ideas it is necessary to repeat concepts and ask patients questions. This is exceptionally difficult for patients who do not speak the language of the country they live in.
10. Training
11. Benefits of home haemodialysis
self-discipline of adult maturity and cannot be relied upon to do repetitive procedures, or to admit errors. Male patients are more likely to take risks regarding adapting regimes or taking short cuts. They often find it difficult to report errors, but after suffering peritonitis, finally appreciate the reasons for the teaching. However, once peritonitis has occurred, even if successfully treated, there is damage to the peritoneal membrane. Some organisms cannot be eradicated. Others destroy the dialysis function of the peritoneal membrane and CAPD has to be abandoned and the patient changed to haemodialysis. 9. Attitude to education of patients
patients
To achieve a semblance of success, it is important to first improve the patient’s general health,
The basic material and maintenance costs are identical for home and hospital haemodialysis
R.A. Baillod
I Patient
Educ. Courts.
treatment. Haemodialysis is a staff-intensive treatment and home care eliminates the cost of staff. However, individual dialysis machines are very expensive ($30 000). Today’s equipment is much more efficient and the treatment times have been reduced so that six or more patients can be treated on an individual machine. It has therefore been necessary to reconsider the cost effectiveness of home haemodialysis. Against this, home-based patients are more disciplined because of their responsibilities and they can do more dialysis treatment. This results in a better quality of health and reduction of complications leading to hospital in-patient episodes. Home dialysis is particularly cost effective if, as a result of adapting dialysis times, the patient can be in full-time employment and therefore contribute socially and financially to society. Home haemodialysis has required technical efficiency producing better medical care and rehabilitation. The patients personalise their treatment and have control of the quality of their health. In addition, they have new skills and respect for themselves. 12. Benefits of CAPD CAPD has very low equipment costs but the disposable items are more expensive, making the overall expenditure equivalent to home haemodialysis. The major contribution of CAPD is that it has greatly increased the availability of dialysis treatment. Haemodialysis of infants is technically difficult and requires very highly skilled nursing and one-to-one nursing care. CAPD at home by parents is ideally suited to infants. For children a home-based CAPD is a painless and very acceptable treatment and it allows full-time schooling. In haemodialysis the biochemistry is rapidly changed at each dialysis treatment, causing exhaustion in elderly patients such that they have hardly recovered from the previous treatment by the time the next treatment is due. CAPD is a continuous treatment and patients are in a steady biochemical state which eliminates the exhaustion periods and therefore gives a better quality of life. Unlike haemodialysis, the success and cost of CAPD is much more dependent on patient behaviour. If a patient makes a simple technical
26 (1995)
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23
error it can result in peritonitis which, if rapidly treated, may be a minor event. However, if treatment is delayed and there is inadequate identification of the organism, it can result in loss of the peritoneum and the need for acute abdominal surgery with possible life-threatening events. This is extremely expensive. CAPD patients’ treatment is interfaced with haemodialysis and patients may for medical reasons move between the two modes of dialysis treatment several times during their life. 13. Conclusion The lessons learnt from the education of home dialysis patients have enormous significance for this conference. In the past 30 years it has been shown that a wide range of ordinary individuals, without medical or nursing backgrounds, are able to master one of the most complex medical treatments and increase the quality of their own health. CAPD, which is an entirely home-based treatment, has expanded the range and age of patients doing their own treatment. Patients, if suitably educated, are able and can be relied upon to perform their treatment with outstanding success, thereby releasing money and staff to further expand the treatment to others in need. References [I] Fassbinder W, Brunner FP, Brynger H, Enhrich JHH, Geerlings W, Raine AEG, Rizzoni G, Selwood NH, Tufveson G, Wing AJ. Combined report on regular dialysis and transplantation in Europe, XX 1989. Nephrol Dial Tranpslant 1991; 41: l-47. [2] Geerling W, Tufveson G, Brunner FP, Ehrich JGG, Fassbinder W, Landais P, Mallick N, Margretier R, Raine AEG, Rizzoni G, Selwood N. Combined report on regular dialysis and transplantation in Europe, XXI 1990. Nephrol Dial Transplant 1991; 6 Suppl 4: l-42. [3] Raine AEG, Margreiter R, Brunner FP, Ehrich JGG, Geerlings W. Landais P, Loirat C, Mallick NP, Selwood NH, Tufveson G. Valderrabano F. Report on management of renal failure in Europe, XXII 1991. Nephrol Dial Transplant Suppl 1992; 7-35. [4] Whittle JC, Whelton PK. Weidelr AJ. Klag MJ. Does racial variation in risk factors explain black-white differences in the incidence of hypertension end-state renal disease. Arch Int Med 1991; 151: 1359-1364.
24
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[5] Clark TJ, Richards NT, Adu D, Michael J. Increased prevalence of dialysis - dependent renal failure in ethnic minorities. Nephrol Dial Transplant 1993; 8: 146-148. [6] Cowie CC, Port TK, Wolfe RA, Savage PT, MOB PP, Hawthorne VM. Disparities in incidence of diabetic end stage renal disease according to race and type of diabetes. Engl J Med 1989; 321: 1074-1079. [7] UKTSSA Annual Report April 1992-March 1993. Maslands Ltd., 1993. [8] Drukker W. Haemodialysis - a historical review. In: Drukker W, Parson FM, Maher JF, editors. Replacement of renal function by dialysis. The Hague: Martinus Nijhoff, 1983. [9] Popovitch RP, Moncrief JW, Decherd JP, Bomar B, Pyle WK. The definition of a novel portable/wearable equi-
Couns.
[IO] [ll] [12]
[13]
26 (1995)
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librium peritoneal dialysis technique [abstracts]. Am Sot Artif Intern Organs 1976; 6: 64. Curtis FK, Cole JJ, Fellow BJ, Tyler LL, Scribner GH. Haemodialysis in the home. Trans Am Sot Artif Intern Organs 1965; 11: 7. Hampers CL, Merrill JR, Cameron E. Haemodialysis in the home - a family affair: Trans Am Sot Artif Intern Organs 1965; 11: 3. Baillod RA et al. Overnight haemodialysis in the home. In: Kerr DNS, editor. Proceedings of the European Dialysis and Transplant Association, Volume II, Boosten En Stols N.V., 1986. Baillod RA. Home dialysis. In: Drukker W, Parson FM, Maher JF, editors. Replacement of renal function by dialysis. The Hague: Martinus Nijhoff, 1983.
ELSEVIER
Patient Education and Counseling 26 (1995) 17-24
Home dialysis: Lessons in patient education Rosemarie Royal
Free Hospital.
Department
of’ Nephrology
A. Baillod
and Transplaniation,
Pond Street,
London
N W3 2QG.
UK
Abstract
The conceptof home haemodialysisfor the regular treatment of renal failure wasfirst put into practice in 1964,30 yearsago. It proved extremely successful. This paper describesthe epidemiologyof renal failure, the reasonsfor home haemodialysisand the educational role necessaryto ensureits success.Continuous ambulatory peritoneal dialysis (CAPD), or autonomousdialysis,is a self-careperitonealtreatment which developedafter 1978for a wider agerange of patients. Its rapid expansionneededa professionalapproachto patient education.Also discussed are the problems patients encounter with conceptual skills, as opposedto the easy acquirementof practical skills and the paper demonstrateshow persons,without formal medicaland nursing education, can mastercomplex treatment skills, Key,rou&: Haemodialysis;Renal failure; CAPD
1. Introduction Dialysis is a process during which the blood and body tissues of the patient are made clean of waste. It replaces the function of diseased kidneys and is one of the treatments available for chronic irreversible renal failure. The treatment has taken place in the home since 1964. This paper describes the important contribution patient education made to the success of dialysis treatment and the lessons to be learned from this very complex treatment. The normal kidney excretes waste products and maintains the body’s water, electrolyte and acid base balance. It also produces hormones which help regulate blood pressure, production of red blood cells and bone physiology. Normal kidneys have a large reserve and can be severely damaged before patients and doctors are aware of any
problem. Chronic renal failure (CRF) due to congenital or acquired disease may be irreversible and progress to end stage renal failure (ESRF), at which point the function of the kidney is reduced to 10% or less of normal. At under 5% of normal function death will occur, if replacement treatment is not introduced. 2. Epidemiology The incidence of ESRF increases with age. In children, where the commonest causes are congenital and familial, the incidence is four new patients per million population per year; in the elderly it can be 100 new patients per million population per year. Glomerulo-nephritis is the commonest cause of ESRF and its incidence increases with age, becoming a significant cause in adolescents and adults. Diabetes, renovascular atherosclerosis
0738-3991/95/$09.50 0 1995 Elsevier Science Ireland Ltd. All rights reserved SSDI 0738-3991(95)00721-B
18
R.A. Baillod / Patient Educ. Cows. 26 (1995) 17-24
and hypertension cause substantial increases in ESRF in the fifth and later decades of life [l-3]. However, 30% of patients remain without a specific diagnosis. Some races have a higher incidence of ESRF. In the USA, the number of people from negro origins receiving dialysis treatment is proportionally higher than their percentage in the general population [4]. In the areas of the United Kingdom where large communities of Asian people have settled, there has been noted an increased need for dialysis due to hypertension and diabetes [5&l. 3. Treatment A kidney transplant is regarded as the best method of renal replacement. However, inspite of significant advances in tissue grafting, it has become more difficult to provide enough transplants because the gap between demand and supply of kidneys has widened. For example, in the United Kingdom and Ireland, 1858 cadaver kidneys were donated in 1993, but the waiting list for kidneys has continued to rise and, in January 1994, it was 4848 patients [7]. Therefore, dialysis remains the most important treatment for the majority of patients. Acute renal failure was successfully treated by haemodialysis in 1945 and peritoneal dialysis in 1946, but difficulties in access, especially to the blood stream, prevented its regular use for ESRF until 1960. The first successful chronic renal failure patient started his treatment in 1961. He lived a further 10 years on regular dialysis treatment
PI.
There are two methods of dialysis. The first and most commonly used is haemodialysis, in which blood is taken outside of the body, and whilst separated by a semi-permeable membrane, the artificial kidney known as the dialyser, the blood is washed with a physiological solution known as the dialysate. The second method, called peritoneal dialysis is, in part, a reversal of the haemodialysis procedure, as the physiological washing solution is introduced into the patient’s abdominal cavity and the semi-permeable membrane, the peritoneum, separates the patient’s blood as it is washed within the body.
Haemodialysis and peritoneal dialysis were developed simultaneously in the early 1960s. Haemodialysis was more commonly used because peritoneal dialysis is less efficient and was initially, technically unsatisfactory and expensive. When the treatment concept changed from intermittent to continuous peritoneal dialysis in 1978 [9], the efficiency improved and the cost was reduced. Continuous ambulatory peritoneal dialysis (CAPD), or autonomous dialysis as it is known in some countries, has allowed a significant increase in the number of patients who can be dialysed at home. It is especially beneficial for infants, children and the elderly. However, because of potential complications, it cannot stand alone and remains dependent on back up haemodialysis. Whereas a successful kidney transplant may restore normal function, inspite of great advances the dialysis procedure at its best will only provide the equivalent of 15% of normal kidney function. As a result, medical complications still occur and life-style is significantly restricted. 4. Reasons for home haemodialysis When by 1964 dialysis for ESRF proved to be a successful treatment, the potential overwhelming costs of extending its availability became clearly apparent. Apart from finance, the other limiting factors were lack of trained nephrologists, staff and space within the hospital. It was therefore thought that to cope with the increasing demand, the treatment would have to be done in the home by the relatives instead of doctors. In 1964, two units in the USA and my unit at the Royal Free Hospital, London, simultaneously started home dialysis [IO-121. As anticipated, it solved a number of problems. For example, the home gave the space for the equipment and the family and patients were the staff. Since there were very few dialysis-trained staff, it made little difference if teaching was directed towards inexperienced staff or the patients and family; the latter were obviously more motivated if the alternative was death. The doctors anticipated that home dialysis might give better medical rehabilitation and encourage a higher degree of independence. They found this to be true. Doctors also envis-
R.A.
Bailiod
/ Patient
Educ.
aged that in the future patients would be able to do their own dialysis treatment, in the same way that diabetics give their own insulin. Home haemodialysis attracted considerable interest and criticism. It was thought by many to be reckless and inhumane. Critics were eventually proved wrong by the good results that were obtained [13]. This success depended on two important aspects. Firstly, technical advances. In order to do the treatment safely the equipment had to be ‘fail safe’, especially as the treatment was often done overnight. Equipment developed rapidly and many of the features we see and take for granted today, such as alarm limits and back-up monitors on all types of medical equipment, were initially developed for the complicated treatment of home haemodialysis in 1964. The second factor was the outstanding contribution of education which enabled patients and relatives to carry out a treatment previously restricted to doctors and nurses. 5. Role of education in treatment and success of home dialysis
The role of education is to inform patients about the nature of their disease and its potential complications. Since dialysis is life sustaining, failure to educate the patient can easily result in death. Patients need to comprehend all the aspects of their management and treatment, including diet, dialysis and medication. It is necessary for patients to learn specific concepts about their illness in addition to practical skills. The latter, although complex and numerous, are easier to learn and understand than the theoretical aspects, These concepts are common to both haemodialysis and CAPD. 5.1. Concepts and theory Concept 1. The first concept is that dialysis is not a cure - it is a replacement treatment. This may never be totally accepted or understood and patients still retain hopes, even 20 years after starting dialysis, that their kidneys will get better. Concept 2. Patients need to realise that dialysis, diet and medication have equal importance for sustainable good health. It is not sufficient for them to comply with taking their medication.
Couns.
26 (1995)
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Concept 3. The most difficult concept for patients and many health care workers to understand is the relationship of fluid balance to body weight. Each patient in a steady metabolic state has an ideal body weight which is determined by clinical assessment. This weight varies throughout the life of a dialysis patient, as patients in positive nutritional balance may gain flesh weight, whilst during an intercurrent illness their body or dry weight may fall. As dialysis patients pass little or no urine, they retain fluid if their fluid intake exceeds their losses. To assess the fluid retained, the patient is weighed and each kg gained is considered to be 1 1 of excess water. The water is removed by ultrafiltration as part of the dialysis process and as a result the patient can be returned to their ideal body weight. In haemodialysis, the patient dialyses three times each week, therefore adjustment of weight takes place every 2-3 days, but in CAPD the adjustment is daily. Patients are asked to restrict their fluid intake to minimise the acute weight gains between dialysis. One of the difficulties encountered is that patients often believe these changes in weight are due to food rather than the fluids, so they reduce their food intake resulting in true body weight loss. Even when adjusted back to the previous ideal body weight, the patient remains water overloaded. In particular, patients often find it difficult to identify and accept the weight loss which occurs during an intercurrent illness. For most patients, the choice of their weight seems entirely ‘mythical and arbitrary’. Concept 4. A great misconception is that you only break your diet if you eat food which is not allowed. However, the diet is balanced to give high energy and good nutrition and failure to eat the whole diet is bad for the patient and is equivalent to ‘breaking the diet’. Large changes in biochemistry and a too rapid removal of fluid makes the patient feel unwell. Sensible patients learn that it is wise to keep to their diet and fluid restrictions. Renal patients feel thirsty and this is significantly worsened by salt in their food. Although patients may not add salt to their food, they often take it inadvertently, especially if they eat commercially available prepared foods. Huge fluid weight gains, due to uncontrol-
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lable thirst, can be life-threatening, as it causes acute fluid collection in their lungs. Patients are taught very early in their training that potassium kills by stopping the heart. Patients have to learn the normal and abnormally high and dangerous levels of blood potassium. Their diet book and lessons are very detailed regarding foods containing potassium. Concept 5. Much of the medication prescribed for dialysis patients appear to them as having no obvious or immediate medical benefits and some medicines are unpleasant to take. For other patients, the number of tablets and the timing are very daunting. If patients are to comply and benefit from their treatment, it is very important to educate them on the reasons for the medication. For example, hypotensive drugs taken before a dialysis session will result in a dangerous fall in blood pressure during the dialysis treatment and therefore patients have to learn to omit the dose before dialysis. Patients need to be able to identify and name each medication and its action. Some medication is varied frequently according to blood results, therefore patients need to carry with them a treatment card on which alterations can be added. 5.2. Practical
skills of home haemodialysis
In the context of this congress ‘Patient education 2000’, home haemodialysis, even though it has been practised now for over 30 years, remains amazing. It is obviously a very complicated treatment and in many ways is little removed from intensive care therapy. Because home treatment was necessary, methods have been devised to allow it to happen. The following outlines the basic skills required: Learning how to use equipment. Today’s equipment is very well designed and automated. With a good routine, learning the mechanics is a minimal part of the patients’ education. They can learn it either by explanation and understanding, or by following a strict protocol. I recommend that patients develop their own training manuals using their own words to ensure that they understand. Manual dexterity and comprehension are necessary to learn how to unwrap and handle sterile items without contaminating them. This is not
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difficult, as workers in pharmaceutical and similar industries throughout the world and often with little education, do this routinely. Handling items such as syringes and sterile fluids becomes automatic and patients are able to adapt their skills with training. As part of the ‘setting up’ for dialysis, patients have to make nursing observations such as pulse, temperature, blood pressure and weight. Accessing the blood circulation. Patients have to access the blood stream in order to circulate blood through the equipment. Without doubt, the most stressful and difficult skill the patient has to acquire is how to insert large-bore needles into artificially dilated veins in their forearms. The veins become dilated following the surgical construction of an arteriovenous fistula. Incredibly, almost all patients will learn to do this, although a few will rely on help. In rare situations, if patients cannot tolerate needles, an alternative form of blood access has to be devised. Controlling the dialysis. The dialysis treatment lasts 3-5 h, during which time the treatment has to be observed to be taking place and that the planned goals of the dialysis are achieved without incident. This is usually done by strict adherence to protocol and detection of faults before starting treatment. In training patients, it is important to ensure that they will seek advice at any noted deviation from their normal routine, however minor it may seem. During the dialysis, patients control the process, react to and interpret alarms and adjust the equipment. In the haemodialysis treatment, the membrane pressures are increased to remove water by ultrafiltration. The procedure needs to be carefully monitored as there is the possibility of leaving patients fluid overloaded, or alternatively, causing circulatory collapse if too much fluid is removed. In the past, the monitoring was done by measuring the blood pressure and weighing the patient at hourly intervals and then adjusting the pressure across the dialysis membrane to increase or reduce their rate of water removal. Fortunately, the current equipment is extremely accurate and reliable and the patient is now only required to dial in at the beginning of the dialysis the volume of water they wish to remove. Patients are taught to give themselves
R.A.
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intravenous drugs during the treatment excorporeal blood stream.
I Paiieni
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via the
6. Success or failure of home haemodialysis Success in home haemodialysis is dependent on the quality of teaching and the patient’s willingness to do the treatment. Most patients are very anxious but overcome this with time. Unwilling patients will sabotage the treatment regardless of all efforts made by the care workers. Failure will also occur if the blood access and training in this area is less than ideal. The anxiety created by not being able to insert needles is devastating. The equipment has to be in perfect working order and well maintained to be reliable. One would never consider home haemodialysis for patients with serious medical problems such as ischaemic heart disease which could be exacerbated during the dialysis treatment. 7. Practical
skills for CAPD
CAPD is an ideal home-based dialysis treatment. For children and the elderly it gives a more stable day-to-day biochemistry, fluid balance and cardiac circulation. In brief, the practical skills of CAPD are to make the basic nursing observations of pulse, blood pressure and weight on a daily basis and to make exchanges of peritoneal fluid. To do this, the patient is required to open and connect two sides of a specially designed connecting system without contamination which would lead to peritonitis. Whilst the technical skills are few and less complex compared to haemodialysis, it is necessary to appreciate the anxiety and weariness that results from the unceasing discipline of CAPD, which needs extremely high standards of sterility far in excess of the standards required for haemodialysis. The exchange is done four times a day, and therefore amounts to 1500 times per year. The high standard must be maintained indefinitely. By following a strict protocol which defines the order in which hand washing, opening of items, connection and disconnection occurs, the patient can achieve a sterile exchange of the bags of peritoneal fluid. Peritonitis is caused by contamination of the peritoneal fluid either by
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accident or carelessness. The design of the equipment, especially the connectors, has improved in the past decade and this has significantly reduced the possibility of contamination during the exchanges. No fool-proof method has yet been designed and patients need to recognise that regardless of their infinite care, it is almost inevitable that a frequent repeated procedure has the possibility of an accidental error. Unfortunately, patients find it difficult to appreciate that they cannot see bacteria and frequently make the comment that ‘everything looked clean’. Learning to see and recognise an error in their procedure and responding by reporting it, is difficult to teach and accept. Regardless of embarrassment or inconvenience, patients must report accidents immediately as it is immensely important that patients take appropriate antibiotic treatment immediately in order to arrest bacterial growth before peritonitis occurs. Patients, in their efforts to help the busy staff, often try to think out problems for themselves, especially when they have ‘apparently’ been given so much responsibility. However, in new situations their decisions are frequently wrong, so patients are taught that they are not allowed ‘to think’ only to seek advice and discussion from trained CAPD staff. In peritoneal dialysis, patients are able to remove fluid by changing their dialysis fluid to higher osmotic strengths to increase ultrafiltration. The techniques of fluid removal are quickly appreciated and learnt by patients. The use of higher osmotic fluids tend to make the function of the peritoneum deteriorate, so patients have to be guided into managing some of their fluid balance by restricting their fluid intake. 8. Success and failure of CAPD Parents are wonderful with the treatment of their children as they have the benefit of being physically and mentally fit and, in addition, they are highly committed to their child’s care. They are always reliable regarding reporting errors. Adolescent patients are capable of doing all the mechanical skills and always learn quicker than their parents. However, they do not have the
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The development of dialysis in the 60s was a shared experience between the staff and patients. Everyone was obliged to teach and share their knowledge. New nurses and doctors had to accept that existing patients knew more than they did about the practical procedure of haemodialysis. It is from this historical background that the teaching of patients in dialysis units is considered the automatic thing to do. There is so much for everyone to learn and patients are with staff on a regular basis for long periods. The United Kingdom dialysis nurses, as part of their official qualification course for dialysis, have to learn to communicate and teach patients and other new staff. All health care workers in the field of dialysis recognise the need to educate patients to prevent loss of life and medical complications. The teaching is done with skill and enthusiasm. However, it is important to note that there is a difference between teaching and actually learning and staff have to be able to assesshow much a patient has learnt. For myself, teaching has been the basis of my clinical life for the past 30 years, so it is difficult for me to consider that in other areas of medicine, education of the patient is not considered one of the most essential aspects of their clinical management.
as sick patients learn very little. In addition, patients are often overwhelmed at first, for they cannot believe what is happening to them, even if dialysis treatment has been discussed many times prior to their needing treatment. For many they see it as a loss of their life and they suffer a period of bereavement. Haemodialysis patients are seen three times a week and CAPD patients daily, during the training period. For both treatments, an initial training period in the hospital is usual. However, the major training achievements are made at home when the patient is settled with their equipment arranged to suit their needs and they are removed from the distractions of other patients. Dialysis training is very comprehensive and is rather like going back to school. The patients make notes and keep records of their treatment and nursing observations. Technical manuals on the operation of equipment are used and booklets and videos on various aspects are also available. In fact, manufacturers of equipment are keen to produce teaching aids. No rigid training period of programme can be imposed, especially for haemodialysis as the subject matter is unusual and the patients ability so varied. Physical fitness and age rather than educational background influences the learning ability. Younger patients always learn much faster than older patients. Illiterate patients compensate in other ways and their willingness to learn overcomes their lack of education. More importantly, there is the need to use appropriate language for the individual patient and be able to recognise when inappropriate words are chosen for explanation. Many patients have limited vocabulary in their own language and elaborate words confuse them. Technical skills are not language dependent, as patients learn by observation and practise. To understand and consolidate ideas it is necessary to repeat concepts and ask patients questions. This is exceptionally difficult for patients who do not speak the language of the country they live in.
10. Training
11. Benefits of home haemodialysis
self-discipline of adult maturity and cannot be relied upon to do repetitive procedures, or to admit errors. Male patients are more likely to take risks regarding adapting regimes or taking short cuts. They often find it difficult to report errors, but after suffering peritonitis, finally appreciate the reasons for the teaching. However, once peritonitis has occurred, even if successfully treated, there is damage to the peritoneal membrane. Some organisms cannot be eradicated. Others destroy the dialysis function of the peritoneal membrane and CAPD has to be abandoned and the patient changed to haemodialysis. 9. Attitude to education of patients
patients
To achieve a semblance of success, it is important to first improve the patient’s general health,
The basic material and maintenance costs are identical for home and hospital haemodialysis
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treatment. Haemodialysis is a staff-intensive treatment and home care eliminates the cost of staff. However, individual dialysis machines are very expensive ($30 000). Today’s equipment is much more efficient and the treatment times have been reduced so that six or more patients can be treated on an individual machine. It has therefore been necessary to reconsider the cost effectiveness of home haemodialysis. Against this, home-based patients are more disciplined because of their responsibilities and they can do more dialysis treatment. This results in a better quality of health and reduction of complications leading to hospital in-patient episodes. Home dialysis is particularly cost effective if, as a result of adapting dialysis times, the patient can be in full-time employment and therefore contribute socially and financially to society. Home haemodialysis has required technical efficiency producing better medical care and rehabilitation. The patients personalise their treatment and have control of the quality of their health. In addition, they have new skills and respect for themselves. 12. Benefits of CAPD CAPD has very low equipment costs but the disposable items are more expensive, making the overall expenditure equivalent to home haemodialysis. The major contribution of CAPD is that it has greatly increased the availability of dialysis treatment. Haemodialysis of infants is technically difficult and requires very highly skilled nursing and one-to-one nursing care. CAPD at home by parents is ideally suited to infants. For children a home-based CAPD is a painless and very acceptable treatment and it allows full-time schooling. In haemodialysis the biochemistry is rapidly changed at each dialysis treatment, causing exhaustion in elderly patients such that they have hardly recovered from the previous treatment by the time the next treatment is due. CAPD is a continuous treatment and patients are in a steady biochemical state which eliminates the exhaustion periods and therefore gives a better quality of life. Unlike haemodialysis, the success and cost of CAPD is much more dependent on patient behaviour. If a patient makes a simple technical
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error it can result in peritonitis which, if rapidly treated, may be a minor event. However, if treatment is delayed and there is inadequate identification of the organism, it can result in loss of the peritoneum and the need for acute abdominal surgery with possible life-threatening events. This is extremely expensive. CAPD patients’ treatment is interfaced with haemodialysis and patients may for medical reasons move between the two modes of dialysis treatment several times during their life. 13. Conclusion The lessons learnt from the education of home dialysis patients have enormous significance for this conference. In the past 30 years it has been shown that a wide range of ordinary individuals, without medical or nursing backgrounds, are able to master one of the most complex medical treatments and increase the quality of their own health. CAPD, which is an entirely home-based treatment, has expanded the range and age of patients doing their own treatment. Patients, if suitably educated, are able and can be relied upon to perform their treatment with outstanding success, thereby releasing money and staff to further expand the treatment to others in need. References [I] Fassbinder W, Brunner FP, Brynger H, Enhrich JHH, Geerlings W, Raine AEG, Rizzoni G, Selwood NH, Tufveson G, Wing AJ. Combined report on regular dialysis and transplantation in Europe, XX 1989. Nephrol Dial Tranpslant 1991; 41: l-47. [2] Geerling W, Tufveson G, Brunner FP, Ehrich JGG, Fassbinder W, Landais P, Mallick N, Margretier R, Raine AEG, Rizzoni G, Selwood N. Combined report on regular dialysis and transplantation in Europe, XXI 1990. Nephrol Dial Transplant 1991; 6 Suppl 4: l-42. [3] Raine AEG, Margreiter R, Brunner FP, Ehrich JGG, Geerlings W. Landais P, Loirat C, Mallick NP, Selwood NH, Tufveson G. Valderrabano F. Report on management of renal failure in Europe, XXII 1991. Nephrol Dial Transplant Suppl 1992; 7-35. [4] Whittle JC, Whelton PK. Weidelr AJ. Klag MJ. Does racial variation in risk factors explain black-white differences in the incidence of hypertension end-state renal disease. Arch Int Med 1991; 151: 1359-1364.
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[5] Clark TJ, Richards NT, Adu D, Michael J. Increased prevalence of dialysis - dependent renal failure in ethnic minorities. Nephrol Dial Transplant 1993; 8: 146-148. [6] Cowie CC, Port TK, Wolfe RA, Savage PT, MOB PP, Hawthorne VM. Disparities in incidence of diabetic end stage renal disease according to race and type of diabetes. Engl J Med 1989; 321: 1074-1079. [7] UKTSSA Annual Report April 1992-March 1993. Maslands Ltd., 1993. [8] Drukker W. Haemodialysis - a historical review. In: Drukker W, Parson FM, Maher JF, editors. Replacement of renal function by dialysis. The Hague: Martinus Nijhoff, 1983. [9] Popovitch RP, Moncrief JW, Decherd JP, Bomar B, Pyle WK. The definition of a novel portable/wearable equi-
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[13]
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librium peritoneal dialysis technique [abstracts]. Am Sot Artif Intern Organs 1976; 6: 64. Curtis FK, Cole JJ, Fellow BJ, Tyler LL, Scribner GH. Haemodialysis in the home. Trans Am Sot Artif Intern Organs 1965; 11: 7. Hampers CL, Merrill JR, Cameron E. Haemodialysis in the home - a family affair: Trans Am Sot Artif Intern Organs 1965; 11: 3. Baillod RA et al. Overnight haemodialysis in the home. In: Kerr DNS, editor. Proceedings of the European Dialysis and Transplant Association, Volume II, Boosten En Stols N.V., 1986. Baillod RA. Home dialysis. In: Drukker W, Parson FM, Maher JF, editors. Replacement of renal function by dialysis. The Hague: Martinus Nijhoff, 1983.