The Choice of Dialysis for the Older Person with End Stage Kidney Disease. A Decision Aid for Patients

Transcription

1 Making Choices: The Choice of Dialysis for the Older Person with End Stage Kidney Disease A Decision Aid for Patients NOTE: This Decision Aid will be produced in A5 format. 1

2 This decision aid was developed by: Leanne Brown Nephrology Nurse Practitioner & PhD Student Queensland University of Technology, Queensland. Glenn Gardner Professor of Nursing at Queensland University of Technology, Queensland. Ann Bonner Professor of Nursing at Queensland University of Technology, Queensland Reviewed by Expert Panel: Dr Nicholas Gray Directory of Nephrology, Sunshine Coast Hospital and Health Service District Dr Balaji Hiremagular Nephrologist, Gold Coast University Hospital Lesley Salem Rural Nurse Practitioner Dr Deidre Fetherstonhaugh PhD Director/Senior Research Fellow Australian Centre for Evidence Based Aged Care (ACEBAC) Paul Swift Consumer, Kidney Health Australia 2

3 Hello! This workbook and CD will provide you with the information you need to consider treatment choices and discuss these with your clinical team if, in the future, your kidneys no longer function enough to keep you alive. Instructions 1. Keep minutes free 2. Get your family to sit with you if you want 3. Have a pen or pencil ready to use 4. Place the CD in the player 5. Press play 6. Follow the directions, don t turn the page until you are asked Evidence that supports the statements in this workbook is referenced by small numbers next to the statements. A list of this evidence appears at the back of the workbook. This Workbook is for you if: You have kidney disease and your kidney function is less than 20%, You want to consider the options available to you when your kidneys deteriorate, or You want your decision known to your family members and the clinicians who are/will be looking after you. You have been told you are not suitable for a kidney transplant 3

4 You will learn about: End Stage Kidney Disease (ESKD) and its effects and management Treatment choices available to you if you reach ESKD The pros and cons of these treatment choices How to weigh the pros and cons of these choices for your personal circumstances 4

5 What do your kidneys do? Your kidneys clean the waste and extra fluid from your blood; your urine (pee) is made up of these waste products and fluids, Control your blood pressure, Balance chemicals in your blood, Keep your bones healthy, and Help you make red blood cells. ESKD occurs when your kidney function (measured in a blood test) is less than 15% If you have ESKD you may: Have puffy legs and ankles, Feel sick and vomit, Have problems concentrating or remembering things, Get itchy, or Feel tired all the time. ESKD is not curable and will get worse over time 5

6 How can kidney disease affect your life? Common things that bother people with kidney disease are listed below. Please check all the things that bother you. Breathing Shortness of Breath Needing to prop yourself up to sleep Daily Activity and Lifestyle Short of breath when walking or exercising Difficulties with daily activities Less Energy Difficulty sleeping Headache Restless or jumpy legs Nausea Itchy skin Swollen ankles or legs Chest pain Burning sensation and pain in feet Pain 6

7 Emotional Feeling anxious Feeling depressed or unable to cope Feeling irritable or angry Feeling embarrassed Social Unable to participate in social activities Feeling isolated Change in job or money situation Thinking Difficulty concentrating Forgetfulness Others Are there other effects that kidney disease has had on your life that you are aware of? Any Other Questions 7

8 Managing Kidney Disease Some of the things that people do to manage kidney disease are listed below. Please those you have used in the past year: Medications: Fluid tablets to get rid of excess fluid Tablets to help with restless or jumpy legs Tablets to help with nausea Tablets or cream to help with itchy skin Tablets or spray to help with chest pain Tablets to help with anxiety or depression Tablets to help manage pain Tablets to help sleep Tablets to help with cramps Daily activities or lifestyle Do things more slowly Reduced the number of things you do Changed the type of things you can do Sleep during the day Reduced working hours or stop working Changed diet or reduced fluid intake 8

9 Others Are there other things that you do to manage or cope with your kidney disease? 9

10 You are receiving this decision aid as you are either suffering from, or are likely to soon be suffering from, end stage kidney disease (ESKD). It is necessary at this point to consider what treatment you would like to undertake. You are receiving the decision aid now as it takes time to consider your treatment choices. At the moment you may not have many symptoms and could be finding it difficult to understand why you need to make a decision right away. It can take between 6 and 12 months to prepare for dialysis. Guidelines recommend the need for education about treatment options when the kidney function is around 20%. It is also important to understand that your symptoms can be managed as they start to occur. Treatment Choices You need to make a decision about which treatment you want to receive so that when your kidneys are at end stage you are ready for one of the two possible options described below: 10

11 1. Dialysis 1 2 or 2. Non-dialysis management (Supportive Care) The next few pages describe these treatment choices 11

12 Choice 1: Dialysis Dialysis; Removes waste and extra fluid from your blood, Can be carried out two different ways: 1. Peritoneal dialysis, and 2. Haemodialysis. Peritoneal Dialysis Peritoneal dialysis is a type of dialysis that can be done at home. It involves an operation to put a tube in the cavity of your stomach, Normally surgery is 1 to 2 months before you need to start on dialysis Fluid goes in and out of your stomach cavity four times a day, or alternatively it can be done overnight whilst you are in bed This form of dialysis needs to be done everyday (seven (7) days per week) Regular health reviews will occur to ensure your symptoms are controlled and quality of life maintained Haemodialysis Haemodialysis can be done at home or at the dialysis centre. It involves an operation to join two blood vessels (vein and artery) together in your arm. This is called a fistula You generally need to be referred for this surgery 6 months before starting dialysis Needles are placed in your fistula and your blood is cleaned by a machine If you don t have a fistula a plastic tube is inserted into a blood vessel (vein) in your neck so your blood can be circulated through the machine and cleaned This form of dialysis will take 4 to 5 hours each session and you will need 3 sessions every week Regular health reviews will occur to ensure your symptoms are controlled and quality of life maintained. 12

13 The life expectancy of people with end stage kidney disease on dialysis is less than life expectancy of healthy people the same age. I have provided some data for comparison: For the age category 65 74: 97 out of 100 people are still alive 9 For the age category 75 84: 92 out of 100 people are still alive 9 For the age category 85 +, 85 out of 100 people are still alive 9 13

14 Pros of undertaking dialysis May lengthen life by a year or more: For the age group 65 to out of 100 patients will be alive after one year 3 For the age group 75 to out of 100 patients will be alive after one year 3 For the age group out of 100 patients will be alive after one year 3 14

15 Pros of undertaking dialysis (cont.) If you have no significant medical problems you will live longer when receiving dialysis than not receiving dialysis 4-6 Symptom Relief Dialysis can remove excess fluid which may relieve breathlessness and swollen legs/ankles. 15

16 Cons of undertaking dialysis There are several pre existing health problems that can affect your life span should you undertake dialysis. Angina, or history of heart attacks Very poor mobility If you already have these health problems then dialysis may not help you live any longer than non-dialysis management. 5 You may not live for longer than 1 year from onset of the disease. For the age group 65 to out of 100 patients will not live for more than one year 3 For the age group 75 to out of 100 patients will not live for more than one year 3 For the age group out of 100 patients will not live for more than one year 3 16

17 Cons of undertaking dialysis (cont.) If you are a resident of a nursing home and you choose dialysis your mobility may get worse. 7 After 3 months, 61 out of 100 had decreased mobility and were less able to attend to their own hygiene and care After 1 year, 97 out of 100 had decreased mobility and were less able to attend to their own hygiene and care 17

18 Undertaking Dialysis may not improve your Symptoms 8 You may still experience pain after commencing dialysis You may still suffer from restless legs You may still experience itchiness after starting dialysis You may still have difficulty sleeping You may still experience tiredness or fatigue 47% of patients report pain 30% suffer from restless legs 55% of patients still experience itchy skin 44% experience sleeping problems 71% experience tiredness Other Concerns You may have to travel some distance to reach the nearest dialysis centre Hospital Admissions You may spend more time in hospital as an inpatient Discomfort of Dialysis Dialysis can make you feel tired and washed out 25 days per patient year 6 You have to maintain a strict fluid and diet restriction 18

19 Summary: Pros of undertaking dialysis If you have no significant medical conditions you will live longer if you receive dialysis. May lengthen life by a year or more: 4-6 For the age group 75 to out of 100 patients will be alive after one year 3 19

20 Summary (cont.): Cons of undertaking dialysis There are several pre existing health problems that can affect your life span should you undertake dialysis: Angina, or history of heart attacks Very poor mobility If you already have these health problems then dialysis may not help you live any longer than non-dialysis management. 5 For the age group 75 to 84, - 20 out of 100 patients will not live for more than one year 3 If you are a resident of a nursing home and you choose dialysis your mobility may get worse. After 3 months, 61 out of 100 patients had a decrease in their mobility and ability to attend to own hygiene and care 7 20

21 Choice 2: Non-dialysis management Non-dialysis management: Is focused on controlling symptoms and suffering Ensures your quality of life is maintained for as long as possible Ensures you receive medication to keep you well for as long as possible Uses pain medication and sedatives at end-of-life Where can I receive non-dialysis management: Clinic visits Home visits when necessary Your place of death is a decision for you and your family to make 21

22 Pros of non-dialysis management Treatment is aimed at keeping you well and symptom free for as long as possible: You may receive care in your own home You may have less episodes of hospital admissions ( 16 days per patient year) 6 You are 4 times more likely to die at home than in hospital 6 You may still live for between 9 and 14 months even if your kidney function is working less than 10% 4-6 Your quality of life will be no worse than those on dialysis 10 No surgery is required Cons of non-dialysis management 1. You may die sooner than if you undertook dialysis Your symptoms may get worse and affect your last few months of life 11 22

23 Summary of Choices - Dialysis Choice Dialysis What s involved Your blood is cleaned by a machine or by fluid being put into your abdomen Surgery to create fistula in arm or to put tube in abdomen Treatment at hospital or home Regular health reviews will occur to ensure your symptoms are controlled and quality of life maintained Pros You may live more than one year You may live longer than if you choose not to have dialysis Cons If you have medical conditions such as angina, poor mobility or live in a nursing home then dialysis may not prolong your life Your symptoms may not be relieved by dialysis You may spend more time in hospital You have to have some type of surgery 23

24 Summary of Choices Non-dialysis Management Choice Non-dialysis Management What s involved Symptom control and maintenance of quality of life Regular review by health professionals at clinic appointments or home Pros No surgery is required You may still live for between 9 & 14 months Quality of life is no worse than when receiving dialysis Less likely to die in hospital if that is your wish Cons You may die sooner than if you undertook dialysis Your symptoms may get worse in the last two months of life 24

25 5 Steps to Making Your Choice about Treatment 1. What are the pros and cons of dialysis and non-dialysis management? 2. How important are each of the pros and cons to me? 3. What questions do I need to ask or discuss before deciding? 4. Who should decide about my treatment choices? 5. What is my overall leaning (preference) about my treatment choices? 25

26 1. My pros and cons 2. Color my values Example Pros Live longer Not ready to die yet Relief of symptoms Don t want to feel ill and struggle with breathing Lengthen life longer than a year 60th wedding anniversary Other Pros Religious beliefs. Family want me around longer 3. My Questions What can I do to prevent me needing dialysis? 26

27 # 1 Cons Medical condition or mobility Am fit and well still able to exercise every day Discomfort Concerned about this Complications Other Cons May end up in hospital with an infection Time spent in hospital on the dialysis machine 4. Who should decide about my treatment? I should decide after considering the opinions of others X The health professionals and I should decide together My health team should decide I m not sure 5. My Leaning (preference) Dialysis Unsure Non-dialysis 27

28 1. My pros and cons 2. Colour my values Example Pros Live longer Lived a good long life Relief of symptoms Not too concerned about this happy to take pills Lengthen life longer than a year Grandsons 21st birthday Other Pros Husband wants everything done 3. My Questions How long will I live? What happens if I feel really sick? 28

29 # 2 Cons Medical condition or mobility Regularly experience chest pain Need help to shower Discomfort Don t want be connected to a dialysis machine 3 times a week for 4 hours a time Complications Other Cons Don t want to end up in hospital Quality of life is more important than quantity 4. Who should decide about this treatment? X I should decide after considering the opinions of others The health professionals and I should decide together My health team should decide I m not sure 5. My Leaning Dialysis Unsure Non-dialysis 29

30 You may still be unsure.. After considering the pros and cons, you may still be unsure Dialysis Unsure Non-dialysis This may be because: You still have questions about the treatment You need to discuss the treatment choices with others You are still not sure what is most important to you in the decision It is important for you to discuss your decision with your family, or close friends, and the health professionals who care for you. 30

31 Suggested Readings Booklets published by the Renal Resource Centre: ( Kidney Failure Treatment Options An Introduction to Haemodialysis An Introduction to Peritoneal Dialysis An Introduction to Conservative Care of Advanced Kidney Disease Kidney Health Australia: ( Living with Kidney Failure (8th edition). Book available from KHA or your local renal health professionals Kidney Ed TV ( Indigenous Kidney Stories How do my kidneys work Kidney Disease Treatments - Fact Sheets: o Home Haemodialysis o Haemodialysis o Peritoneal Dialysis o Treatment Options o Access for Dialysis o Non-dialysis Supportive Care: A treatment option 31

32 Other Contacts Kidney Health Australia Information Centre Kidney Support Network Qld 70 Koorong St, The Gap Qld 4016 Ph (07)

33 Scientific Readings 1. American Kidney Fund. Peritoneal Dialysis Rockville, MD 20852: American Kidney Fund; 2014 [cited 2014 May]. Available from: 2. American Kidney Fund. Hemodialysis Rockville, MD 20852: American Kidney Fund; 2014 [cited 2014May].Availablefrom: 3. McDonald S. ANZDATA Registry 2012 Report: Chapter 3 Deaths. Adelaide, South Australia: Australia and New Zealand Dialysis and Transplant Registry, Joly D, Anglicheau D, Alberti C, Nguyen A-T, Touam M, Grünfeld J-P, et al. Octogenarians Reaching End-Stage Renal Disease: Cohort Study of Decision-Making and Clinical Outcomes. Journal of the American Society of Nephrology April 1, 2003;14(4): Murtagh FE, Marsh JE, Donohoe P, Ekbal NJ, Sheerin NS, Harris FE. Dialysis or not? A comparative survival study of patients over 75 years with chronic kidney disease stage 5. Nephrol Dial Transplant Jul;22(7): PubMed PMID: Carson RC, Juszczak M, Davenport A, Burns A. Is maximum conservative management an equivalent treatment option to dialysis for elderly patients with significant comorbid disease? Clinical Journal of the American Society of Nephrology: CJASN. 2009;4(10): Kurella Tamura MMDMPH, Covinsky KEMDMPH, Chertow GMMDMPH, Yaffe KMD, Landefeld CSMD, McCulloch CEP. Functional Status of Elderly Adults before and after Initiation of Dialysis. The New England Journal of Medicine Oct 15;361(16): PubMed PMID: ; English. 8. Murtagh FE, Addington-Hall J, Higginson IJ. The prevalence of symptoms in end-stage renal disease: a systematic review. Adv Chronic Kidney Dis Jan;14(1): PubMed PMID: Australian Bureau of Statistics. Deaths, Australia, In: Statistics ABo, editor. Canberra Seow Y-y, Cheung YB, Qu LM, Yee ACP. Trajectory of Quality of Life for Poor Prognosis Stage 5D Chronic Kidney Disease with and without Dialysis. American Journal of Nephrology Apr 2013;37(3): PubMed PMID: ; English. 11. Murtagh FE, Sheerin NS, Addington-Hall J, Higginson IJ. Trajectories of illness in stage 5 chronic kidney disease: a longitudinal study of patient symptoms and concerns in the last year of life. Clinical journal of the American Society of Nephrology : CJASN Jul;6(7): PubMed PMID: