Other

• Only meetings for patients attending low clearance in [unit].
• Every 3 months meeting of full team: but weekly discussions of individual patients.
• Twice a week.
• Joint clinic and specialist nursing staff for this patient cohort.
• Transplant and advanced kidney care twice weekly.
• Pre low clearance clinic generally weekly.

Other

• Haemodialysis and Home therapies nurses.
• Spiritual team.
• Transplant recipient coordinator and live donor coordinators.
• Renal managers.
• F1, ST2.
• Meeting supported by clerical team.
• Renal Technicians.
• Renal gp.
• Ward nurses.

Other

• We are in the process of setting up formal pre-dialysis clinics in all areas but until this happens, there aren’t dedicated clinics although CKD pts access and see pre-dialysis counsellors, anaemia management, vascular access/PD nurses where appropriate and also patient counsellors when relevant.
• Patients are seen by the advanced kidney care nurses for education, anaemia management, access referral, hepatitis B vaccination. Each AKC nurse is attached to one of the hospitals & the designated consultant(s). So patients approaching dialysis can be seen closer to home rather than having to travel to the two pre dx clinics at [unit name] (Covering East & West Kent). The designated clinics run weekly. Patients may return to general nephrology clinics at the other 4 satellite units at neighbouring hospitals if they chose to be seen closer to home.
• Early CKD (up to eGFR 20ml/min) are seen in CKD or nephrology clinic under named consultants. Patients are then referred to Advanced Kidney Care (pre-dialysis) which may then be a different named consultant for continuity of care within pre-dialysis.
• Both the above. Also practical issues related to transport.
• There are differing models across our geographical patch.
• Both of the above selected.
• They have different clinic.
• The pre-dialysis clinics are nurse led.
• Because other members of MSRT cannot support all pre-dialysis patients attending at same clinic. Plus continuity valued.

Others

• Working on translated information Formal case MSRT discussion for selected patients.
• All patients plus families/carers are offered a 1 hour appt for CKD/RRT education, with our pre dx Nurse Specialist, when all RRT options are discussed and a Kidney Care Plan offered.
• Dedicated pre-dialysis CNS [consultant nurse] team.
• Home visit by CKD nurse.
• One to one (nurse/patient) ASK clinic, a preliminary talk with an advanced kidney care nurse.
• Main education providers pre-dialysis clinical nurse specialists.
• Nurse educators.
• Just beginning to use PDA’s some home visits social worker/counsellor talks and dietician.
• Home Visits by pre-dialysis nurses and counsellors.
• Predialysis nurse education.
• One-to-one discussion/consultation with a Pre Dialysis Nurse and also follow up discussion/consultation. Appointments arranged around and to follow clinic review with consultant where possible to minimise clinic attendances for patients. This is not always possible due to the geographical area covered.
• First contact for pre-dialysis education is usually via a home visit when all options are discussed by the nurse.
• We have a peer support programme where patients can access other patients for support.
• Cultural and health improvement offices available.
• All patients get a home visit by educator/counsellor.
• Nurse consultation.
• 1 : 1 WITH PREDIALYSIS SPECIALIST NURSES.
• One to one education as per protocol by kidney failure support nurse. Visit to CAPD unit.
• CKD nurse specialist.
• We have formally established peer meetings if requested, though this would typically be away from the ‘medical’ clinic. It is usually possible to match modality if requested.
• Renal unit open day 6/12ly with stands for all aspects of rrt, diet, social work, patient groups etc.
• There is a renal nurse lead Dialysis education programme covering almost 99 percent of patients.

Group session with other pre-dialysis patients.

The paper survey had a Likert scale (never, rarely, occasionally, frequently, and always); however, in the web version we simplified it to ‘tick all that apply’. Regarding responses in the paper version, only items that were ticked for either frequently or always were counted as ticked.

Other

• Consultants and CNS’s [consultant nurses] have both dedicated patients caseloads and shared patient caseloads MDT ensures that patient cases are shared to ensure continuity of care when patients are in-patients.
• Mix-all consultants have named patients but will see others e.g. for transplant workup. there is culture of sharing care and full MDT discussions. patients will move to a different consultant when modality changes.
• Each consultant is assigned to a satellite unit, with responsibility for HD, non dx outpatients in that unit. Consultants also have areas of interest & are dedicated to each modality. All consultants cover inpatients on a rotational basis.
• Most CKD patients have a particular consultant. They may move to speciality consultants if nearing ESRF or starting dialysis.
• Leads for HD, PD, LCC [low clearance clinic], Tx . . . shared gen neph, wards and on call.
• Consultant of the week cares for all in-patients, OP clinics are run on a named patient basis but Consultants do see other colleagues patients when necessary e.g. to cover leave or on-call.
• Missing answer from paper version.
• Share as in-patient.
• Inpatients are shared (on-call person in charge). Outpatients are typically matched to a service or geographical location e.g. in centre dialysis, or clinic at x hospital.
• Dialysis access clinic run by One consultant Transplant clinic run by one Consultant although all see some transplant pts in their clinic.

N/A, not applicable.

Other

• Of the 5 consultants, one has a monthly LCC [low clearance clinic] including CKM. I had a dedicated weekly LCC which has recently been disbanded (into my 2 general nephrology clinics) due to my taking on a home dialysis clinic also. Therefore, 4/5 consultants see their LCC and CKM patients in their gen neph clinics.
• Our 2 renal community nurses visit our Conservative Care patients at home regularly and liaise with GPs and DNs to provide care.
• Shared care with primary care is common.
• 50% managed at home by Consultant Nurse in partnership with primary care where appropriate.
• Home visits.
• Referred to palliative care consultant when symptomatic.
• Currently no dedicated clinic to follow up patients who have opted for conservative management. The geographical area covered and the resources currently available make this difficult to implement.
• Nurse specialist review at home (renal).
• Patient choice between primary care and specialist clinics.
• Dedicated clinic when e-GFR < 12.
• Community based renal palliative sister.
• Dependent on eGFR, home visits undertaken for review.
• Home visit.
• Conservative Care Nurse – Home Visits.
• A patient may not wish to attend a clinic at MRI and will be followed up at a more local OP clinic or in collaboration with their GP.
• Home visits contribute to the regular reviews.

Within ‘other’, 11 units indicated they used more than one terminology.

Other

• Conservative management and supportive care.
• Conservative care management and supportive care.
• Conservative management, supportive care, maximum conservative management.
• More than one ticked (conservative kidney management, non-dialysis care, conservative management, conservative kidney management, palliative care).
• Ticked more than one Conservative kidney management, Conservative management, Conservative care management, Maximum conservative management, Supportive care.
• Ticked more than one non-dialysis care, conservative management, supportive care.
• 3 options ticked conservative kidney management, conservative management, supportive care.
• Conservative management (Non-dialysis) Many terms used.
• Have ticked five of the above options (Conservative kidney management, conservative management, non-dialysis care, supportive care, palliative care).
• Three are ticked in post version (Conservative kidney management, conservative management, supportive care).
• No single term. We have as many ‘don’t knows, see when we get there’ as ‘not for dialysis’.
• Active supportive care.
• I’m not sure the terminology here is important it’s the care that is provided that is important patients may need different care at different times and depending what other comorbidities are present i.e. may start off as max cons management and then move to palliative care sorry I don’t feel this question is appropriate all terms can be used . . .
• Regular clinic care.
• Conservative care.

• Some pts in whom a decision has been made for no dialysis aren’t always referred to conservative care nursing team but this is improving with better awareness.
• Some are more likely to discharge to primary care and provide telephone advice if needed. Others will keep reviewing CKM patients until no longer feasible/patient dies.
• Variable level of commitment to conservative care.
• Different views on treatment plans and when to classify patients, and reviewing overall condition.

Other

• Unit clinical psychologist.
• Dialysis nurses/sisters from all 3 dialysis units [unit names], social worker, counsellor, dialysis nurse educator.
• Consultant Nurse.
• Renal palliative clinical nurse specialist.
• Palliative healthcare assistant and palliative consultant nurse.
• CASTE website.
• Initially set up with dual palliative care/renal participation – now run by renal alone with good palliative care links and support.

Other

• McMillan Nurse Consultant.
• Team effort for any care – palliative team supportive care consultant nurse specialist and consultant for development of . . . above plus palliative care consultant.
• We have received input from Palliative care team.
• Renal nurse specialist to add to nurses.
• Team of consultant and three nurses to add to nephrologists and nurses.
• Each area led by nephrologist and nurse specialist.

N/A, not applicable.

Other

• Availability of staff to allow staff time off to attend courses (lack of time?).
• Pre-education for RRT always includes this option.
• Some individuals trained if particularly keen.
• Education to other members of the department has been provided informally by our pre dialysis nurse team. In 2010 an education project was funded by the National End of Life Care Network to provide education and training to the renal workforce in areas of end of life care. The project was led by a specialist palliative care nurse educator.
• Nurses involved in discussing conservative care with patients have all either been to supportive care education days/conferences or received additional training with home palliative care teams.
• This is honestly not something we have thought about until recently. We are about to set up Shared Decision Making clinics with MDT structure along the lines of Cancer care clinics.
• Service has developed by evolution. Will likely consider formal training programme.
• We have a small team and an excellent input from palliative care.
• Not convinced we are failing these patients with our current practice – which isn’t the same as the derogatory ‘lack of interest’.

Other

• Ethnic issues variable. Some positive, some negative. Not to mislead-the lack of staff availability (and funding) has meant that development of our programme has been slower.
• Sorry but I find this question a bit odd unless I have misunderstood it. I would like to think that myself and my colleagues treat people in a conservative manner on an individual case basis and in a shared decision manner with the patient – patients are the influence for ‘conservative care’ in our unit . . . ?
• Inadequate resources to staff a conservative programme.
• CCG [clinical commissioning group] funding.
• The nephrologists attitude balances out, though once a decision is made it is respected. The attitude is not obviously driven by religion, race or sex (in the nephrologist). The nurses attitudes are different. Some may exert a negative effect as they are uncomfortable with the discussion.
• We don’t have a ‘programme’.

Don’t know

• Current CV IT system cannot easily give this info.
• Because having received this survey late in the day I do not have time/opportunity to access the information however, I do know that he have a high number of patients on dialysis > 75 and using a shared decision methodology, a low number of patients who choose conservative care or whichever term you choose to use. We also have a number of patients that we do not ever expect to need to make that decision of whether to have dialysis or not as their kidney function and/or symptoms do not indicate the need to start however they die of other causes . . . arguably they are treated similarly as maximum medical management . . .
• Only can determine we had 224 patients with eGFRs < 15 in 2012 and of those 66 patients were conservative care (30–39%).
• Conservative care not recorded on renal IT system at present.
• The number is a rough estimate. There is bias in the number on conservative care as they do not migrate. The majority of patients on conservative care are CKD4 and they are by no means restricted to the over 75’s.

Don’t know

• Not recorded.
• Unknown.
• Data not collected.
• Not sure. 28 patients dies over 75 years on CKM in this timeframe.
• Difficult to obtain, but very few change to active Rx; we have published our data.
• No answer.
• Sorry again due to lateness I have not had time to look at the numbers.
• 68 died with label of cons. but most not symptomatic, we don’t have those stats.
• Patients decisions not entered on renal data base previously, new system records decisions with date.
• Not recorded.
• Have not looked at exact number over 75 yet.
• Unfortunately this information is incomplete and not accurately collected in our Proton system.
• Don’t collate this data.
• Not entered.
• Data for 2012 is not collected.
• Data not routinely collected.
• No available database.
• Unable to specify.
• Don’t have records.
• Difficult to answer. They are all symptomatic to a certain degree.
• Don’t record it.
• No dedicated data base for conservative gp of patients.
• Approx 8 – Sometimes it is a multisystem decline.

Other

• See text from Q15.
• Every 5 weeks.
• At two overreach sites and in patient own home by renal team.
• Every six weeks.
• In reality there is flexibility and a mixed economy. There are patients whose needs are suitable who we will return to a local gen nephrology clinic if geographically preferable for example.

Other

• An equal combination of general nephrology, pre dx, & at home.
• All above.
• In a general nephrology clinic, In a pre-dialysis clinic/low clearance clinic, In own home by renal team, In own home by GP/community team are all ticked.
• Discharged to GP. CNS [consultant nurse] joint cares for through home visits.
• All of the above.
• Ticked more than one (pre-dialysis, own home by GP/community team, follow up phone calls from LCC [low clearance clinic] nurses).
• Ticked more than one (pre-dialysis, own home by renal team).
• Two given (in a general nephrology clinic and in own home by renal team).
• Two ticked (pre-dialysis and in own home by GP/community team).

Other

• Individualised.
• It depends on the individual patient needs.
• As required & care shared with GP & Hospice team.
• As required.
• As needed per individual.
• Symptomatic patients seen by palliative care weekly or daily depending on symptoms.
• Monthly appointments however regular telephone contact in between with patient/carer to monitor symptoms. Asymptomatic pt’s two monthly.
• 2 monthly.
• Frequency will be influenced by their comorbidities and transport etc. difficulties Symptomatic patients likely seen every 2 months or so.
• Patients managed in community. Very infrequently patients come back for a single review for symptom control. Over 90% patients do not want to come back to clinic when invited.
• As required.
• 6 weekly.
• 6–8 weeks.
• If symptomatic patients reviewed in community by primary/secondary care For asymptomatic 2 monthly.
• 2 months.
• As needed by palliative care.
• If asymptomatic – seen back in standard low clearance OP clinic.
• Dependant entirely on need, frailty, symptom burden, distance etc. Weekly not uncommon in response to a change in symptoms not uncommon.
• Depending on individual circumstances 2 to 3 monthly intervals.
• Obviously more frequently as they become symptomatic.

Other

• Occasional practical help provided.
• Communication with hospice or any other service/personnel as required.
• Liaison with GPs to advice when patients unable to attend clinic.
• Advanced care planning in pilot scheme at the moment Home visits not routine but could be offered if required.
• In the process of developing an advanced care planning document.
• Palliative care or community matron involvement as necessary.
• Not sure what the Gold Standards Framework is – we certainly talk to GP’s!

Other

• Sorry this is a difficult question to answer for others and it really is down to the individual pt.
• Age > 80yrs – somewhat.

Other

• Case by case differs Usually raised at the point of RRT education so usually at eGFR < 20–25.
• A combination of the above depending on the individual patient.
• When seen in Education Clinic to discuss RRT options.
• When assessment suggests progression to end-stage is likely. Conservative care discussed along with all modalities for RRT with all patients.
• At the time decision is made to refer to pre-d or not (not referred if adamant they don’t want it, referred if undecided). so 12 to 18 months pre-d.
• Not clearly one trigger. If a patient is unlike to reach esrf, then we don’t talk about it too much, on other patients we may raise it years before when the eGFR is around 20, i.e. if there is a change of AKI putting them onto dialysis.

Other

• They are involved if patient wishes them to be involved. We don’t currently invite carers/family but they are always welcome.
• Telephone advice/information from renal specialist nurses on request.
• Encouraged to attend conservative care clinic.

Other

• They get a talk on CM at the educational evenings which includes another video about CM. They get the home visit which is when CM is discussed. They get follow up letters which reminds them of the option of CM and asks if they want to chat about it further. Patient decision aids just started to be used.
• Conservative care booklet under construction in unit.
• In house dvd.
• Locally produced patient decision guide.
• In-house DVD.
• Visits to dialysis units to see patients on dialysis 2. pre-dialysis workshop to see equipment i.e. mannequins with access 3. meet with expert patients at patient education events.

Other

• ACP document and renal care plan document.
• GPs are always informed-and assume they record on their database but this isn’t audited; out of hours service alerted when a DNR [do not resuscitate] order signed.
• GP informed.
• GP’s informed and asked to add to their database/tell out of hours etc. but we don’t check its done.
• Letters written to GP following decision. Asked to add to Gold Framework Register when clinically indicated.
• Also usually documented In letters to GP following clinic review.
• Registered on Devon wide electronic end of life register (available to GPs/ambulance/out of hours service) when EOL [end-of-life] care discussed.
• Nursing notes.
• GP informed by letter.
• Palliative Care Register.
• Nurses notes.
• Communicated to GP +/- suggestion to list on palliative care register.

Other

• Patient becomes symptomatic in some way.
• Not ready to die.
• Patients get scared and life becomes very precious when they actually face their own mortality.
• Patients think they don’t want dialysis until actually comes to it or death + basically refuse to make decision.
• Some people leave decision until the point they need dialysis.
• Most frequently patients change their minds when they start to feel unwell – the most common situation is an inability on the patient’s part to accept the need for dialysis until life threatening symptoms develop.
• Patients say they don’t want dialysis but then change their minds when symptomatic and faced with the reality of uraemia/death.
• Patient changes mind. Doesn’t like the idea of RRT, but when becomes symptomatic realises decline is now imminent and wants RRT.
• Fear of dying when the reality hits home.
• When confronted with the prospect of dying within weeks or months, some change their minds about dialysis.
• Some patients just change their mind. This has nothing to do with the length of time they have had to make their decision. Some patients will not make a decision about having dialysis and say they will only have it if it is absolutely necessary and refuse to have access formed, they are hard to classify as either pre dialysis or conservative management. They allow us to manage symptoms but not prepare for dialysis.
• Acute admission + AKI and patient then chooses dialysis above death – this is very common, understandably and not to be discouraged.
• Not enough to comment. Usually because the ignorably theoretical has turned into unignorable reality.

Other

• Renal unit continues to care for patient but GP and palliative teams informed, so that as symptom burden increases, there are increasing inputs form primary and palliative care.
• Mix of approaches depending on the patient and the individual GP . . . but the GP would be informed of the decision in writing.
• Primarily remain under the care of renal team with involvement from GP, community nurses & Hospice as required.
• Under GP, Conservative Care CNS [consultant nurse] liaises and is available if symptomatic and/or needs IV Iron/Epo.
• Generally care is shared between renal unit and primary care agencies.
• Depends on the reasons for decision. If GFR 14 and patient dying of cancer, back to GP. If GFR 10, anaemia and low calcium but otherwise OK, we’ll do most of it. if GFR 4 and symptomatic of uraemia, with no other co-morbs, we’ll share palliative type care with GP or palli care team.

Other

• GP involvement variable-not able to give a definite answer.
• A mixture of approaches.
• We ask for patient’s to be placed on their GSF and keep a record of these patients ourselves.
• All of the above possible.
• Primary and secondary care work collaboratively to manage pt’s effectively.
• Gps take their cue from patient wishes and consultant discussion.
• Also pre dialysis specialist nurses liaise with GPs/primary care staff regarding the provision and organisation of palliative care support and provide information and advice on symptom management.
• Renal/CKD organise bloods, palliative care referral and home visits.
• GPs sometimes assess patients either in the pt’s home or in the GP Surgery.
• District nurses, community matron or long term conditions teams involved also in ACP.
• Most patients choose to stay under the care (?) of the renal unit with GPs providing blood tests (moved to GPs arrange blood tests but liaise with renal unit for their interpretation).
• The list typifies the attitude of the unit to these patients. That they remain under our care. It does not suggest that primary care cannot and does not provide the full range of interventions in some patients. We see ACP as our responsibility though clearly many patients will talk to their GPs.

Other

• Coordination between palliative teams in secondary care and GPs.
• Currently by letter but leaflet in preparation.
• Email advice.
• We usually write a letter explaining the likely course of the patient’s condition, symptoms commonly encountered and management advice.
• Tell re Renal LPC.
• Email help.
• E-mail advice service.
• As needed for that patient.
• Renal page on local cancer care website.

Other

• Information regarding this mostly provided by the palliative care physician and services which are embedded in the renal unit, but act independent of the renal unit outside hospitals.
• No comment provided by respondent.
• Not sure what you mean. We would inform individual GPs when they have a patient in that situation. No general GP info programme.

Other

• Functional status and change thereof.
• Low albumin high POS-s score.
• Functional status.
• Patient request running out of access.
• Repeated question, once maximum conservative care is decided upon then added to register.

Other

• GP.
• All MDT for inpatient but not for outpatient.
• Primary care.
• Advanced practitioners.
• Renal GPs.
• GPs.
• The patient and carers!

Other

• Marie Curie nurses.
• Renal pt counsellors often help with special funding applications and others in individual patients e.g. heart failure support team, dementia, head injury.
• Specialist nurses in heart failure & diabetes.
• Expect primary care to get in local comm services as needed.

Other

• Nursing homes with palliative support.
• Depends on patients preference, especially preferred place of care for patients at end of life.
• Our surrounding DGHs and cottage hospitals (are they still called that).

Other

• Palliative specialists rarely involved.
• I didn’t understand this question.
• Palliative care team have written guidelines on symptom control.
• Home visits by palliative care consultant as required.
• Try to avoid hospital admission with appropriate support where possible.
• Shared care with GPS.
• Tend to be advanced symptoms in the community.

Other

• Middle grade training.
• Liaise on medication prescription.
• Joint mortality meetings.
• They attend and learn in renal clinics.
• 3 monthly MDT.
• Training for pallitive care trainees.

Other

• EOL [end-of-life] meetings every 3–4 months to discuss patients on GSF, patients eligible for GSF, GSF recording, dialysis patients who are failing and may need a discussion regarding withdrawal, difficult cases (patient/family issues), deaths, recording of DNACPR etc.
• Annual audit of all the above.
• Use of DNACPR and ACP and Register.
• Survey currently being developed.

Other

• Greater/easier access to community palliative care resources via patchy depending on geographical area.
• More community/GP support.
• We are already undertaking the above agreed aspects of care.

Other

• Hospices are also integral, and deliver important care, especially to some of our patients further from the main centre. We often communicate with them to facilitate discharge, or avoid admission (e.g. for infections, blood transfusions etc). We are implementing a register to facilitate all this. I have not seen hospices mentioned much in this questionnaire.
• Involve counselling team and patient decision making and decision aids.
• Better recording centrally of treatment decisions.
• Planning or wish list?
• Would like all of the above but no funding agreed either from within hospital or from primary care.
• Comment after ‘none planned’ – no funding is available and kidney care project is finishing.
• Small sense that is working well. Small enough to know everyone and pick up a phone!
• Increase psychology input.

Other

• We would need to allocate specific staffing to this, as part of our plan to increase commitment to conservative care. We’d struggle to service study needs before then.
• Difficult to recruit patients. Very small number.
• Don’t know.

Other

• RRT choice – treatment or conservative care MUST be based on patients choice and by informed consent. If a study allows freedom of choice/informed consent and then observed outcome – this would be acceptable.
• As above.
• Would need to discuss with the team although my feeling is no.
• Don’t know.