Table 2.

Barriers and facilitators to conservative care from open–ended survey questions

Barriers and FacilitatorsExemplar Quotations
Barriers to conservative care
 Educational barriers
  Deficiencies in continuing medical education, personal knowledge, and experience“Barrier just because of my limited knowledge/experience.”
“It [has] been an issue especially dealing with adults with cardiac risk factors as to when to stop the [nonsteroidal anti-inflammatory drugs] NSAIDs especially [acetylsalicylic acid] ASA or the statins. How does one strike the balance?”
“This subject is not target[ed] very well and having information on how to manage symptoms if patients choose to not pursue dialysis would be helpful.”
  Lack of awareness of conservative management clinic“Did not know conservative clinic existed. Need to promote the palliative nephrology clinic.”
“Never heard of the palliative nephrology clinic.”
  Deficiencies in education and support for patients and their families“Patients are sometimes surprised that they have the right to refuse treatment.”
“I think having more educational resources for patients would help most. Once the initial decision is made, it is not as difficult to deal with issues as they arise.”
 Challenges having access to and collaborating with health care providers
  Difficulty communicating and collaborating with nephrology and other health care providers“CKD clinic nurses have presented a significant barrier to care as they often counteract the discussions I have had with patients, their families and the homecare aids and nurses. They typically seem unable to accept that a patient has declined dialysis.”
“Communication between health providers is often a barrier—with suboptimal communication regarding what has been done, what is planned.”
  Long wait times in referral to nephrology“Biggest barrier—wait times! [Alberta Health Services, a provincial health authority] AHS needs to hire more nephrologists.”
“Long wait times to see nephrologists.”
“Consultant appointments are too far out and unavailable when I need them.”
  Travel and resource challenges specific to rural settings“Only sometimes a trouble due to rural location and distance to dialysis center for consult with nephrology, even if conservative management.”
“Barriers to centralized services tend to be a problem in rural communities.”
“Limited resources for care at home in rural areas.”
Facilitators for improving conservative care
 Enhancing conservative management–related knowledge
  Need for continued education and clear guidelines“Would be helpful to know when/why a nephrologist would treat a CKD/ESRD patient with conservative/palliative care, rather than choose dialysis. This might help inform future discussion with these patients prior to referral to nephrologist.”
“Provision of information about available services.”
“I would really appreciate some educational resources for families and patients and myself.”
 Improving access to nephrology and palliative care services
  Improving communication and comanagement with nephrology“I just want to be able to call someone for advice and not feel like I am wasting their time. I want a nephrologist to want to help me because I am in the trenches.”
“Shared care is essential especially given the workload of these patients. Not ‘my’ patient and not ‘your patient’. Our patient!”
“Timely access and phone availability for consultation from 0800 to 2000 [hours] is important.”
  Better access to palliative support“Palliative care in rural areas I find hard to access.”
“Insufficient after hours (palliative) nephrology resources and palliative physician resources overall.”
 Providing adequate resources to avoid transitions of care
  Need more support to keep patients at home“Multi-system disease often requires considerable resources to keep patients in outpatient/home setting.”
“Home care service in [a small population center] is very poor … they say that are too busy to provide additional services for seniors. Often patients end up in the [emergency room] ER and/or hospital when early intervention could prevent this. Palliative care in this region is also poor. I have taken it on myself to do home visits, etc. to help people at home as long as the patient and family are comfortable.”