Renal Supportive Care Karen Jenkins  Consultant Nurse Julie Daniels Renal Social Worker Department of Renal Medicine East ...
Aims of Session <ul><li>Overview of Renal Palliative care </li></ul><ul><li>Patient pathways </li></ul><ul><li>Symptom con...
Geography of Renal services <ul><li>Provides regional renal services across East & West Kent – covering 1.25 million popul...
The   Renal NSF: Part 2 <ul><li>Quality requirement 1: Prevention and early detection of chronic kidney disease (CKD) </li...
Definition of  5 Stages of CKD NICE Sept 2008
The Need for Renal Palliative Care <ul><li>People with CKD often have complex medical problems </li></ul><ul><li>Not all p...
Renal Palliative Options Consultant Referrals Withdrawal from  treatment  Dialysis Failing Transplant Not having treatment...
Withdrawal from Treatment Dialysis Transplantation
Impact of Dialysis
Decision Making <ul><li>The patient has decided to cease ‘active’ treatment </li></ul><ul><li>Identifying issues which hav...
Mental Capacity Act 2007 <ul><li>Starts from the assumption that the person making the decision has capacity </li></ul><ul...
Plan of Care <ul><li>Include all those involved in patients care needs </li></ul><ul><li>Give realistic choice i.e. fit fo...
Withdrawing from treatment <ul><li>Patient numbers: 2006:  8 ; 2007: 19 ; 2008: 20 </li></ul><ul><li>Average survival 1- 3...
Average Age  HD Withdrawal PD Withdrawal Mean 76 yrs  ± 6 Median 76yrs Range 62-89yrs Mean 70 yrs  ±  10 Median70yrs Range...
Time Frame in service 2004-2005 HD Withdrawal PD Withdrawal N= 43 Mean 12 days  ±14 Median 7 days Range 1-30 days N=6 Mean...
Place of death withdrawal from treatment
Symptom Control <ul><li>Stop most renal drugs </li></ul><ul><li>Nausea/Vomiting : </li></ul><ul><li>  - Haloperidol 0.5 -2...
Analgesia in Advanced CKD Drug eGFR <10mls/min Paracetamol Normal dose NSAIDS Normal dose Combined paracetamol 500mg &/or ...
Is stopping dialysis a form of suicide or a choice to cease medical intervention?
Supportive Care Not having dialysis
Considering the Options <ul><li>Patients attend or have one to one education sessions to discuss treatment options: haemod...
Thought Process <ul><li>Opting not to have dialysis or to withdraw not an easy decision </li></ul><ul><li>Implications nee...
Factors affecting decision making <ul><li>Religious beliefs </li></ul><ul><li>Cultural background </li></ul><ul><li>Person...
Dialysis or Not? Survival in elderly patients with stage 5 CKD <ul><li>Murtagh et al  (2005)  carried out a study to compa...
Study Conclusions <ul><li>Patients with ESRD over 75yrs who currently have dialysis have substantial survival advantage ov...
Supportive Care Numbers <ul><li>Patient numbers: 2006: 85 ; 2007: 124 ; 2008: 150 </li></ul><ul><li>Mean age 81yrs  ±  8, ...
Plan of Care <ul><li>Where seen – clinic/home </li></ul><ul><li>Assessment of all care needs by all relevant HCP </li></ul...
Place of death supportive care
Symptom Control <ul><li>Pain </li></ul><ul><li>Dyspnoea </li></ul><ul><li>Pruritis </li></ul><ul><li>Nausea </li></ul><ul>...
Causes of pain <ul><li>Often from co-morbid conditions: </li></ul><ul><ul><li>Ischaemic pain from peripheral vascular dise...
Fluid Overload <ul><li>Increase diuretics -  Frusemide, Bumetanide, Metolazone </li></ul><ul><li>Avoid Spironolactone  - i...
Other Symptoms <ul><li>Nausea/Vomiting : </li></ul><ul><li>  - Haloperidol 0.5 -2.0mg daily, </li></ul><ul><li>  - Cyclizi...
0% 20% 40% 60% 80% 100% Fatigue Pruritus Drowsiness Dyspnoea Poor concentration Pain Loss of appetite Swelling legs Dry mo...
Symptom prevalence <ul><li>More than 1 in 3 conservatively-managed patients will have: </li></ul><ul><ul><li>poor mobility...
Quality of Life
Service Evaluation Audit of Practice 2005
Service evaluation 2005 <ul><li>18 month period </li></ul><ul><li>Demographics  </li></ul><ul><li>Primary renal diagnosis ...
Questionnaire results information   <ul><li>100% of patients stated that the information received was relevant when decidi...
Support <ul><li>80 % Choice of where they were seen </li></ul><ul><li>87% Supported by renal staff </li></ul><ul><li>27% O...
Outcome Data Withdrawal (18 pts) CMT Initial (56 pts) CMT Final (56 pts) Age 72.8 yrs 81yrs 82yrs Gender 10:8 32:24 eGFR -...
Study summary <ul><li>Hb levels maintained </li></ul><ul><li>Appropriate reductions  made in medications </li></ul><ul><li...
Summary  <ul><li>Education – patients/carers/HCP’s </li></ul><ul><li>Support patient’s wishes </li></ul><ul><li>Avoid acut...
Any Questions
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Renal Supportive Care Karen Jenkins Consultant Nurse

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  • People with chronic kidney disease (CKD) are required to make many choices about their treatment throughout their journey of this disease. Opting not to have dialysis or to withdraw from treatment is a difficult decision and the implications need to be shared with patients through the counselling process, to enable them to make an appropriate decision. It is important that patients understand that the decision to take the ‘no-dialysis’ option is reversible, they need to be reassured that whenever they make a choice, they still retain the right to re-discuss their options and receive full supportive care from the resources of renal services
  • 20/10/10
  • Renal Supportive Care Karen Jenkins Consultant Nurse

    1. 1. Renal Supportive Care Karen Jenkins Consultant Nurse Julie Daniels Renal Social Worker Department of Renal Medicine East Kent Hospitals University NHS Trust
    2. 2. Aims of Session <ul><li>Overview of Renal Palliative care </li></ul><ul><li>Patient pathways </li></ul><ul><li>Symptom control </li></ul><ul><li>Research/Statistics </li></ul><ul><li>Renal LCP </li></ul><ul><li>Service provision </li></ul>
    3. 3. Geography of Renal services <ul><li>Provides regional renal services across East & West Kent – covering 1.25 million population </li></ul><ul><li>Canterbury 39 inpatient beds mixture of use </li></ul><ul><li>Haemodialysis (250 – 2007) 329 current - total capacity by Sept 2009 430 patients </li></ul><ul><ul><li>Canterbury centre unit </li></ul></ul><ul><ul><li>Satellite Units </li></ul></ul><ul><ul><li>Margate </li></ul></ul><ul><ul><li>Medway </li></ul></ul><ul><ul><li>Maidstone </li></ul></ul><ul><ul><li>Dover </li></ul></ul><ul><ul><li>Ashford </li></ul></ul><ul><li>Home therapies </li></ul><ul><ul><li>Peritoneal dialysis 71 </li></ul></ul><ul><ul><li>Home haemodialysis 6 </li></ul></ul><ul><li>Transplantation 240 </li></ul><ul><li>Conservative management – current active 98 </li></ul><ul><li>Patients approaching ESRD circa 350 </li></ul>
    4. 4. The Renal NSF: Part 2 <ul><li>Quality requirement 1: Prevention and early detection of chronic kidney disease (CKD) </li></ul><ul><li>Quality requirement 2: Minimising the progression and consequences of CKD </li></ul><ul><li>Quality requirement 3: Acute renal failure </li></ul><ul><li>Quality requirement 4: End of life care </li></ul>
    5. 5. Definition of 5 Stages of CKD NICE Sept 2008
    6. 6. The Need for Renal Palliative Care <ul><li>People with CKD often have complex medical problems </li></ul><ul><li>Not all patients are suitable for dialysis/can tolerate dialysis </li></ul><ul><li>Patients choose not to have dialysis </li></ul><ul><li>Dialysis is a life saving treatment, but can sometimes be harrowing and futile </li></ul><ul><li>Coping with the dependency of a permanent treatment </li></ul><ul><li>Importance of quality of life </li></ul>
    7. 7. Renal Palliative Options Consultant Referrals Withdrawal from treatment Dialysis Failing Transplant Not having treatment Supportive Care/ Conservative Management
    8. 8. Withdrawal from Treatment Dialysis Transplantation
    9. 9. Impact of Dialysis
    10. 10. Decision Making <ul><li>The patient has decided to cease ‘active’ treatment </li></ul><ul><li>Identifying issues which have influenced patients decision making </li></ul><ul><li>Acute medical episode may have determined future of permanent treatment </li></ul><ul><li>Inability to sustain dialysis – medical decision </li></ul><ul><li>Quality of life </li></ul>
    11. 11. Mental Capacity Act 2007 <ul><li>Starts from the assumption that the person making the decision has capacity </li></ul><ul><li>Do they have all relevant information to make that decision </li></ul><ul><li>Are the HCP the best people to explain key issues around withdrawal </li></ul><ul><li>Is there a better day/time to speak about withdrawal e.g straight after dialysis or 24 hrs later </li></ul><ul><li>The 5 principles of the MCA </li></ul>
    12. 12. Plan of Care <ul><li>Include all those involved in patients care needs </li></ul><ul><li>Give realistic choice i.e. fit for transfer home/hospice </li></ul><ul><li>Enable patients to stay on renal ward if that’s their wish and support relatives/carers </li></ul><ul><li>Assess care needs quickly to avoid delay in community support if going home is an option </li></ul><ul><li>Renal LCP in place </li></ul><ul><li>DNAR in place </li></ul><ul><li>GP involvement/DN /Hospice/Palliative Register </li></ul>
    13. 13. Withdrawing from treatment <ul><li>Patient numbers: 2006: 8 ; 2007: 19 ; 2008: 20 </li></ul><ul><li>Average survival 1- 30 days from stopping dialysis </li></ul><ul><li>Influencing factors: age, co-morbidity, quality of life, ADL, sustainability of dialysis </li></ul>
    14. 14. Average Age HD Withdrawal PD Withdrawal Mean 76 yrs ± 6 Median 76yrs Range 62-89yrs Mean 70 yrs ± 10 Median70yrs Range 56-81yrs
    15. 15. Time Frame in service 2004-2005 HD Withdrawal PD Withdrawal N= 43 Mean 12 days ±14 Median 7 days Range 1-30 days N=6 Mean 9 days ± 12 Median 5 days Range 1-33 days
    16. 16. Place of death withdrawal from treatment
    17. 17. Symptom Control <ul><li>Stop most renal drugs </li></ul><ul><li>Nausea/Vomiting : </li></ul><ul><li> - Haloperidol 0.5 -2.0mg daily, </li></ul><ul><li> - Cyclizine 50mg tds </li></ul><ul><li> - Metoclopramide 5-10mg tds </li></ul><ul><li>Agitation : Midazolam 50% of normal dose 2.5-5mg stat sc & then infusion 5-10mg over 24hrs via syringe driver </li></ul><ul><li>Secretions : Glycopyrronium 200-400mcg stat, 600-1200mcg/24hrs </li></ul><ul><li>Itching : Chlorpheniramine 4mg tds/qds; Aqueous cream with menthol </li></ul>
    18. 18. Analgesia in Advanced CKD Drug eGFR <10mls/min Paracetamol Normal dose NSAIDS Normal dose Combined paracetamol 500mg &/or 30mg codeine/dihydrocodeine 4 tablets in 24hrs Tramadol Avoid if possible but may use 50mg 12hrly Morphine 1.25-2.5mg 6-8hrly Hydromorph 1.3mg every 8hrs Methadone 50% of normal dose Fentanyl 50% of normal dose Alfentanil Normal dose
    19. 19. Is stopping dialysis a form of suicide or a choice to cease medical intervention?
    20. 20. Supportive Care Not having dialysis
    21. 21. Considering the Options <ul><li>Patients attend or have one to one education sessions to discuss treatment options: haemodialysis/peritoneal dialysis/ transplantation/conservative management </li></ul><ul><li>Conservative management viewed as an equal treatment option – recent in UK, not an option in the USA, just starting to be recognised in Europe </li></ul>
    22. 22. Thought Process <ul><li>Opting not to have dialysis or to withdraw not an easy decision </li></ul><ul><li>Implications need to be shared in a counselling process </li></ul><ul><li>Many reasons and influencing factors why patients make this choice </li></ul><ul><li>Implications of decision need to be understood by both patients and professionals </li></ul><ul><li>No dialysis is NOT a ‘no treatment’ option </li></ul><ul><li>Services needed to support these patients </li></ul>
    23. 23. Factors affecting decision making <ul><li>Religious beliefs </li></ul><ul><li>Cultural background </li></ul><ul><li>Personal relationships ( single/married/partnerships) </li></ul><ul><li>Recent bereavement </li></ul><ul><li>Family circumstances – close/estranged </li></ul><ul><li>Fear of the unknown </li></ul><ul><li>Age </li></ul><ul><li>Distance to travel </li></ul><ul><li>QOL </li></ul><ul><li>Co-morbidities </li></ul>
    24. 24. Dialysis or Not? Survival in elderly patients with stage 5 CKD <ul><li>Murtagh et al (2005) carried out a study to compare survival in elderly CKD Stage 5 patients managed with and without dialysis, and to identify which of several key variables might be associated with survival </li></ul><ul><li>Retrospective study across 4 Renal units – Guy’s, Kings, St Helier, St Georges, of patients aged 75yr+ known to each unit </li></ul><ul><li>Data collected – demographic, co-morbidity (using Davies co-morbidity score –malignancy, IHD, PVD, LV dysfunction, DM, Systemic collagen vascular disease </li></ul><ul><li>Inclusions all patients reaching eGFR < 15 ml/min and 75 or over </li></ul><ul><li>Exclusions eGFR < 15 ml/min at presentation /advanced incurable solid organ malignancy </li></ul>F E Murtagh, N Sheerin J Marsh, P Donohoe et al ASN Abstract Nov 2005
    25. 25. Study Conclusions <ul><li>Patients with ESRD over 75yrs who currently have dialysis have substantial survival advantage over those not dialysed </li></ul><ul><li>But much of this survival advantage is lost in those with high co-morbidity (Davies co-morbidity score) </li></ul><ul><li>Comment – consider co-morbidities when discussing dialysis </li></ul>
    26. 26. Supportive Care Numbers <ul><li>Patient numbers: 2006: 85 ; 2007: 124 ; 2008: 150 </li></ul><ul><li>Mean age 81yrs ± 8, median 83yrs, Range 47-98yrs </li></ul><ul><li>Average time in service 2004-2007 206 days ± 202 Median 240 days, Range 1-805 days </li></ul><ul><li>Mean eGFR 13ml/min/1.73m ² </li></ul>
    27. 27. Plan of Care <ul><li>Where seen – clinic/home </li></ul><ul><li>Assessment of all care needs by all relevant HCP </li></ul><ul><li>Joint domiciliary visits </li></ul><ul><li>Collaborative working DN/Community matron/GP/ Hospice </li></ul><ul><li>Acceptance of family and carers </li></ul><ul><li>Time Frame </li></ul><ul><li>Renal LCP Sept 2008 www.mpcil.org.uk </li></ul><ul><li>DNAR </li></ul>
    28. 28. Place of death supportive care
    29. 29. Symptom Control <ul><li>Pain </li></ul><ul><li>Dyspnoea </li></ul><ul><li>Pruritis </li></ul><ul><li>Nausea </li></ul><ul><li>Restless legs </li></ul><ul><li>Agitation </li></ul><ul><li>Fluid overload </li></ul>
    30. 30. Causes of pain <ul><li>Often from co-morbid conditions: </li></ul><ul><ul><li>Ischaemic pain from peripheral vascular disease </li></ul></ul><ul><ul><li>Neuropathic pain from peripheral neuropathy </li></ul></ul><ul><ul><li>Bone pain from e.g. osteoporosis or renal bone disease </li></ul></ul><ul><ul><li>Musculo-skeletal pain </li></ul></ul><ul><ul><li>Angina </li></ul></ul><ul><ul><li>Murtagh et al Journal of Pain and PalliativeCare Pharmacotherapy, 2007: 21 (2); 5-16 </li></ul></ul><ul><ul><li>Davison 2003 </li></ul></ul>
    31. 31. Fluid Overload <ul><li>Increase diuretics - Frusemide, Bumetanide, Metolazone </li></ul><ul><li>Avoid Spironolactone - if have heart failure discuss with HF team </li></ul><ul><li>Tissue viability assessment – thin skin, weeping </li></ul><ul><li>Pulmonary oedema </li></ul>
    32. 32. Other Symptoms <ul><li>Nausea/Vomiting : </li></ul><ul><li> - Haloperidol 0.5 -2.0mg daily, </li></ul><ul><li> - Cyclizine 50mg tds </li></ul><ul><li> - Metoclopramide 5-10mg tds </li></ul><ul><li>Agitation : Midazolam 50% of normal dose 2.5-5mg stat sc & then infusion 5-10mg over 24hrs via syringe driver </li></ul><ul><li>Secretions : Glycopyrronium 200-400mcg stat, 600-1200mcg/24hrs </li></ul><ul><li>Itching : Chlorpheniramine 4mg tds/qds </li></ul><ul><li>Hiccups – Chlorpromazine/Haloperidol </li></ul>
    33. 33. 0% 20% 40% 60% 80% 100% Fatigue Pruritus Drowsiness Dyspnoea Poor concentration Pain Loss of appetite Swelling legs Dry mouth Constipation Nausea Cough Poor sleep severe quite a lot somewhat little present but no distress missing data Prevalence and severity of symptoms in month before death (n = 49) Level of distress
    34. 34. Symptom prevalence <ul><li>More than 1 in 3 conservatively-managed patients will have: </li></ul><ul><ul><li>poor mobility, fatigue/weakness, pain, pruritis, poor appetite, dyspnoea, difficulty sleeping, drowsiness, constipation, feeling anxious, restless legs </li></ul></ul><ul><li>End of life </li></ul><ul><ul><li>pain, agitation, myoclonus, dyspnoea, nausea </li></ul></ul>
    35. 35. Quality of Life
    36. 36. Service Evaluation Audit of Practice 2005
    37. 37. Service evaluation 2005 <ul><li>18 month period </li></ul><ul><li>Demographics </li></ul><ul><li>Primary renal diagnosis and co-morbidities </li></ul><ul><li>Medications </li></ul><ul><li>Haemoglobin (Hb) </li></ul><ul><li>Glomerular filtration rate (eGFR) </li></ul><ul><li>Decision making </li></ul><ul><li>Hospice involvement </li></ul><ul><li>Patient survey </li></ul>
    38. 38. Questionnaire results information <ul><li>100% of patients stated that the information received was relevant when deciding to have supportive care </li></ul><ul><li>87% Information assisted in decision making </li></ul><ul><li>Information received via: </li></ul><ul><ul><li>60% clinic </li></ul></ul><ul><ul><li>20% Home </li></ul></ul><ul><ul><li>13% Education sessions </li></ul></ul><ul><ul><li>7% Other (internet) </li></ul></ul>
    39. 39. Support <ul><li>80 % Choice of where they were seen </li></ul><ul><li>87% Supported by renal staff </li></ul><ul><li>27% Offered hospice support </li></ul><ul><li>53% Contact renal team </li></ul><ul><li>47% Contact Primary Care/Hospice team </li></ul><ul><li>67% Social Care Support </li></ul><ul><li>50% believed they did not have any dietary restrictions </li></ul>
    40. 40. Outcome Data Withdrawal (18 pts) CMT Initial (56 pts) CMT Final (56 pts) Age 72.8 yrs 81yrs 82yrs Gender 10:8 32:24 eGFR - 11mls/min - Hb - 10.6g/dl 11.2g/dl Meds - 8 pp (0-17) 6 pp (2-19) Place of Death 6:4:8 - 6:13:8
    41. 41. Study summary <ul><li>Hb levels maintained </li></ul><ul><li>Appropriate reductions made in medications </li></ul><ul><li>Dietary restrictions not enforced </li></ul><ul><li>Majority patients died in home or hospice environment </li></ul><ul><li>Feedback from patients positive </li></ul><ul><li>Effective communication network </li></ul>
    42. 42. Summary <ul><li>Education – patients/carers/HCP’s </li></ul><ul><li>Support patient’s wishes </li></ul><ul><li>Avoid acute admission/ choice in place of death </li></ul><ul><li>End of Life pathway for patients with CKD </li></ul><ul><li>Symptom control </li></ul><ul><li>Collaborative working with allied healthcare providers </li></ul><ul><li>GP – palliative register </li></ul><ul><li>Darzi report influence on service provision </li></ul>
    43. 43. Any Questions

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