Patient Management

Mapping the future: Implementation strategies for kidney supportive care

With the recent finding that late referral to hospice for patients on dialysis does not reduce hospitalization, ICU admission or Medicare costs compared to patients on dialysis who died without hospice,1 the evidence continues to accumulate that end-of-life care for patients on dialysis substantially lags behind that for patients with cancer, dementia and heart failure.2,3

Alvin H. Moss

Compared to patients with other chronic diseases, studies have shown patients on dialysis have a high (80%) hospitalization rate in the last 3 months of life,4 are more likely to be admitted to an ICU and undergo an intensive procedure such as cardiopulmonary resuscitation, feeding tube insertion or mechanical ventilation in the last month of life and die in the hospital.2 Paradoxically, patients on dialysis have been recognized as being especially appropriate for supportive care, including end-of-life care interventions, because of their high comorbidity, shortened life expectancy, high symptom burden and dependence on a long-term life-sustaining treatment for their survival.5

Nephrologists and other clinicians involved in kidney care cannot depend on supportive care specialists to deal with these substantial unmet end-of-life care needs in their patients. In 2010, a task force of the American Academy of Hospice and Palliative Medicine estimated an acute physician shortage of 2,500 to 7,500 specialty palliative medicine physicians in the U.S. and there is an insufficient number of physicians in palliative medicine fellowship programs to meet this shortage in the future.6 In addition, few advanced patients with chronic kidney disease on dialysis receive supportive care consultations when they are hospitalized. When it has been provided, supportive care has been associated with shorter hospital stays and lower costs for patients with ESRD who died in the hospital, along with higher hospice referral and decreased 30-day readmission for patients with ESRD discharged alive.7

Due to this shortage, it is incumbent on nephrology clinicians to learn primary supportive care skills. These include basic management of pain and symptoms, basic management of depression and anxiety and basic discussions with patients about prognosis, goals of treatment and values and preferences for end-of-life treatment.8 Surveys of nephrology fellows have indicated they believe it is their responsibility to provide end-of-life care to patients on dialysis and it is important to learn how to do so. However, it is not being taught in most nephrology fellowship programs.9 A promising sign is that much energy and innovation is presently being devoted to improving the communication skills of nephrology fellows in programs like NephoTalk.10

For these reasons, an initiative to improve primary supportive care in the United States for patients with advanced CKD and ESRD is particularly relevant and timely. This article kicks off a series in Nephrology News & Issues that addresses the significant unmet supportive care needs of this population and to enable nephrology clinicians to successfully implement supportive care knowledge and skills in their practices.

Patients want interventions

Patients on dialysis have indicated they would welcome supportive care interventions. Pain and symptom assessment and management is important. Patients have prioritized an interest in research to better treat depression, itching, nausea, cramping, restless legs and poor energy.11 Studies have found that better control of pain and symptoms improves the self-reported quality of life of patients on dialysis.12

Nephrologists, nurse practitioners, physician assistants and nurses are largely unaware of the presence and severity of symptoms in patients who are on maintenance hemodialysis.13 Patients’ symptoms are under-recognized, severity is underestimated and treatment is largely lacking.14 Most patients on dialysis want hospice when they are dying, yet hospice referral for dialysis patients is only half that of patients in the general population and hospice referral is often made late with 40% referred within 3 days of death.1

Validated symptom assessment tools could improve recognition of symptoms. Two validated tools for patients with ESRD are the Edmonton Symptom Assessment Scale-renal (ESAS-r), which includes 11 symptoms,15 and the Integrated Palliative Care Outcome Scale for kidney patients (IPOS-Renal) which includes 17 symptoms.16

Greater focus on patient-centered care needed

Commentators on the quality challenges to end-of-life care for patients on dialysis have called for the culture of ESRD care to become more patient centered.17 The Institute of Medicine (IOM) included patient-centered care in its list of desired attributes to improve patient care in the 21st century. The IOM defines patient centered as “care that is respectful of and responsive to individual patient preferences, needs and values and [ensures] that patient values guide all clinical decisions.”18

Studies of the end-of-life care perspectives of patients have demonstrated that, as opposed to their physicians who tend to work from a biomedical focus, patients and families are naturally more patient-centered in their thinking and tend to view the end of life with broader psychosocial and spiritual meaning and what matters most to them. To transform the culture of ESRD patient care to one that is more patient centered, nephrologists have been encouraged to become more engaged with their patients and be willing to listen, make time, go beyond their job description, re-imagine what it means to provide “good” care and see value in relationship building with their patients and families.19

Define conversations with patients

There is overlap in the concepts of a serious illness conversation, advance care planning and shared decision-making.20 A serious illness conversation is a broader concept that includes advance care planning and shared decision-making. Patient’s values, preferences and goals are identified in the context of the patient’s illness and prognosis with members of the health care team and family present (see Table 1). The patient’s preferences are documented in the form of advance directives and medical orders as appropriate and more likely to be respected.

Shared decision-making is particularly relevant to the care of older patients with CKD, yet it is poorly integrated into their care. It occurs in conversations in which older patients with CKD and their physicians reach agreement on a specific course of treatment after patients describe their values and preferences and physicians present information about diagnosis, prognosis and treatment alternatives with their attendant benefits and risks. These conversations occur rarely, but these are especially important because multiple studies have found older patients with CKD, particularly those 75 years or older with multiple comorbidities, may not live any longer with dialysis than if they chose not to start.21 In the United States, unlike other countries, most of the oldest patients with CKD with the highest number of severe comorbidities will likely start dialysis, which may increase their suffering without offering a realistic expectation of benefit.22

After the American Society of Nephrology and the Renal Physicians Association first published the clinical practice guideline, Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis in 2000, the importance of shared decision-making in the care of patients with kidney disease has been recognized.21 In 2012, in its Choosing Wisely Campaign recommendations, the ASN included shared decision-making prior to the initiation of dialysis as one of its top five questions that patients and physicians should discuss.23

Give patients the option of no dialysis

Shared decision-making has been noted to be the “pinnacle” of patient-centered care.24 One of the hoped outcomes of incorporating primary supportive care into the practice of nephrology clinicians is serious illness conversations with shared decision-making will occur more often with older patients with CKD who can be predicted to have a poor prognosis. One challenge for nephrology clinicians and dialysis organizations is how to be more intentional and systematic in incorporating these conversations into the treatment of patients with kidney disease. A pragmatic approach is to start with patients with the worst prognoses. The shared decision-making clinical practice guideline recommends nephrology clinicians estimate the patient’s prognosis as part of the process of preparing to talk to patients and families. The guideline recommends use of the “surprise” question — Would I be surprised if this patient died in the next year? — as a way to identify patients with a poor prognosis who have a high risk of 1-year mortality. The guideline notes that a “No” response to the surprise question, age, functional status and comorbidity score are statistically significant independent predictors of poor prognosis.21

In other countries, as many of 15% of patients with advanced CKD and comorbidities choose a medical management without dialysis pathway (see Table 2).25 That number in the United States is 1% to 2%. In a recent study, approximately two-thirds of U.S. nephrologists indicated they did not even discuss or offer medical management without dialysis to advanced patients with CKD in their practices.26 To better implement shared decision-making into the care of patients with kidney disease, nephrology clinicians will need to become more familiar with the limited benefit of dialysis to certain patient groups and the ethics of justifying medical management without dialysis to these patients. In a qualitative study of nephrologists’ attitudes toward medical management without dialysis, most said they saw a conflict with their perceived role as one of instilling hope and offering treatment to improve symptoms.26

Many considered medical management without dialysis to be “no care” and something which would cause them moral distress if they offered it. The nephrologists also cited institutional barriers to discussing medical management without dialysis including an absence of time, lack of protocols to provide such care, financial incentives to start dialysis, and the need for greater coordination of care for such patients among nephrology, primary care, social work and hospice. There is a need for further education of nephrologists about medical management without dialysis so these barriers to envisioning it as a reasonable and justifiable treatment for certain patients are overcome.27

The 2013 KDIGO Controversies Conference on Supportive Care participants recommended the term “comprehensive conservative care” to describe active medical management with dialysis. They noted it to include all the elements listed in Table 1.28 One challenge to improve patient-centered end-of-life care for advanced kidney patients in the U.S. is for nephrology practices to establish robust medical management without dialysis programs.

Communication skills for serious illness conversations are one of the most needed supportive care skills in the nephrology and dialysis community. Various programs teach these skills, such as Respecting Choices, VitalTalk, the Serious Illness Care Program and the Veterans Affairs Goals of Care Conversation Program. These have in common many questions for a serious illness conversation (see Table 2) from which medical management without dialysis could be identified as the preferred choice of older patients with significant comorbidities. Through these conversations, nephrology clinicians will be in a better position to identify and respect patients’ wishes for the end of life.

The medical literature describes several positive outcomes from serious illness conversations in which advance care planning occurs (see Table 3).29,30 Table 4 presents the elements of a comprehensive supportive care program that most dialysis centers will want to implement incrementally.

Conclusion

Although there is much to do to improve supportive care for patients with advanced CKD and ESRD, there is every reason to think the nephrology community will get the job done, especially with the increasing emphasis in the ESRD Quality Incentive Program on patient-centered, value-based measures such as those on pain, depression and the patient and family’s experience of care. This article series will point to innovations in kidney supportive care that will enable nephrology clinicians to develop primary supportive care skills. The goal is to translate innovations into practice to better assess and treat pain and other symptoms, better identify seriously ill patients with CKD and ESRD, better communicate and conduct serious illness conversations, establish medical management without dialysis programs and refer patients to hospice in a timelier manner.

The goals are to provide patients with the care that matters most to them, respectful of and responsive to individual patient preferences, needs and values and ensures patient values guide all clinical decisions.18

With the recent finding that late referral to hospice for patients on dialysis does not reduce hospitalization, ICU admission or Medicare costs compared to patients on dialysis who died without hospice,1 the evidence continues to accumulate that end-of-life care for patients on dialysis substantially lags behind that for patients with cancer, dementia and heart failure.2,3

Alvin H. Moss

Compared to patients with other chronic diseases, studies have shown patients on dialysis have a high (80%) hospitalization rate in the last 3 months of life,4 are more likely to be admitted to an ICU and undergo an intensive procedure such as cardiopulmonary resuscitation, feeding tube insertion or mechanical ventilation in the last month of life and die in the hospital.2 Paradoxically, patients on dialysis have been recognized as being especially appropriate for supportive care, including end-of-life care interventions, because of their high comorbidity, shortened life expectancy, high symptom burden and dependence on a long-term life-sustaining treatment for their survival.5

Nephrologists and other clinicians involved in kidney care cannot depend on supportive care specialists to deal with these substantial unmet end-of-life care needs in their patients. In 2010, a task force of the American Academy of Hospice and Palliative Medicine estimated an acute physician shortage of 2,500 to 7,500 specialty palliative medicine physicians in the U.S. and there is an insufficient number of physicians in palliative medicine fellowship programs to meet this shortage in the future.6 In addition, few advanced patients with chronic kidney disease on dialysis receive supportive care consultations when they are hospitalized. When it has been provided, supportive care has been associated with shorter hospital stays and lower costs for patients with ESRD who died in the hospital, along with higher hospice referral and decreased 30-day readmission for patients with ESRD discharged alive.7

Due to this shortage, it is incumbent on nephrology clinicians to learn primary supportive care skills. These include basic management of pain and symptoms, basic management of depression and anxiety and basic discussions with patients about prognosis, goals of treatment and values and preferences for end-of-life treatment.8 Surveys of nephrology fellows have indicated they believe it is their responsibility to provide end-of-life care to patients on dialysis and it is important to learn how to do so. However, it is not being taught in most nephrology fellowship programs.9 A promising sign is that much energy and innovation is presently being devoted to improving the communication skills of nephrology fellows in programs like NephoTalk.10

PAGE BREAK

For these reasons, an initiative to improve primary supportive care in the United States for patients with advanced CKD and ESRD is particularly relevant and timely. This article kicks off a series in Nephrology News & Issues that addresses the significant unmet supportive care needs of this population and to enable nephrology clinicians to successfully implement supportive care knowledge and skills in their practices.

Patients want interventions

Patients on dialysis have indicated they would welcome supportive care interventions. Pain and symptom assessment and management is important. Patients have prioritized an interest in research to better treat depression, itching, nausea, cramping, restless legs and poor energy.11 Studies have found that better control of pain and symptoms improves the self-reported quality of life of patients on dialysis.12

Nephrologists, nurse practitioners, physician assistants and nurses are largely unaware of the presence and severity of symptoms in patients who are on maintenance hemodialysis.13 Patients’ symptoms are under-recognized, severity is underestimated and treatment is largely lacking.14 Most patients on dialysis want hospice when they are dying, yet hospice referral for dialysis patients is only half that of patients in the general population and hospice referral is often made late with 40% referred within 3 days of death.1

Validated symptom assessment tools could improve recognition of symptoms. Two validated tools for patients with ESRD are the Edmonton Symptom Assessment Scale-renal (ESAS-r), which includes 11 symptoms,15 and the Integrated Palliative Care Outcome Scale for kidney patients (IPOS-Renal) which includes 17 symptoms.16

Greater focus on patient-centered care needed

Commentators on the quality challenges to end-of-life care for patients on dialysis have called for the culture of ESRD care to become more patient centered.17 The Institute of Medicine (IOM) included patient-centered care in its list of desired attributes to improve patient care in the 21st century. The IOM defines patient centered as “care that is respectful of and responsive to individual patient preferences, needs and values and [ensures] that patient values guide all clinical decisions.”18

Studies of the end-of-life care perspectives of patients have demonstrated that, as opposed to their physicians who tend to work from a biomedical focus, patients and families are naturally more patient-centered in their thinking and tend to view the end of life with broader psychosocial and spiritual meaning and what matters most to them. To transform the culture of ESRD patient care to one that is more patient centered, nephrologists have been encouraged to become more engaged with their patients and be willing to listen, make time, go beyond their job description, re-imagine what it means to provide “good” care and see value in relationship building with their patients and families.19

PAGE BREAK

Define conversations with patients

There is overlap in the concepts of a serious illness conversation, advance care planning and shared decision-making.20 A serious illness conversation is a broader concept that includes advance care planning and shared decision-making. Patient’s values, preferences and goals are identified in the context of the patient’s illness and prognosis with members of the health care team and family present (see Table 1). The patient’s preferences are documented in the form of advance directives and medical orders as appropriate and more likely to be respected.

Shared decision-making is particularly relevant to the care of older patients with CKD, yet it is poorly integrated into their care. It occurs in conversations in which older patients with CKD and their physicians reach agreement on a specific course of treatment after patients describe their values and preferences and physicians present information about diagnosis, prognosis and treatment alternatives with their attendant benefits and risks. These conversations occur rarely, but these are especially important because multiple studies have found older patients with CKD, particularly those 75 years or older with multiple comorbidities, may not live any longer with dialysis than if they chose not to start.21 In the United States, unlike other countries, most of the oldest patients with CKD with the highest number of severe comorbidities will likely start dialysis, which may increase their suffering without offering a realistic expectation of benefit.22

After the American Society of Nephrology and the Renal Physicians Association first published the clinical practice guideline, Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis in 2000, the importance of shared decision-making in the care of patients with kidney disease has been recognized.21 In 2012, in its Choosing Wisely Campaign recommendations, the ASN included shared decision-making prior to the initiation of dialysis as one of its top five questions that patients and physicians should discuss.23

Give patients the option of no dialysis

Shared decision-making has been noted to be the “pinnacle” of patient-centered care.24 One of the hoped outcomes of incorporating primary supportive care into the practice of nephrology clinicians is serious illness conversations with shared decision-making will occur more often with older patients with CKD who can be predicted to have a poor prognosis. One challenge for nephrology clinicians and dialysis organizations is how to be more intentional and systematic in incorporating these conversations into the treatment of patients with kidney disease. A pragmatic approach is to start with patients with the worst prognoses. The shared decision-making clinical practice guideline recommends nephrology clinicians estimate the patient’s prognosis as part of the process of preparing to talk to patients and families. The guideline recommends use of the “surprise” question — Would I be surprised if this patient died in the next year? — as a way to identify patients with a poor prognosis who have a high risk of 1-year mortality. The guideline notes that a “No” response to the surprise question, age, functional status and comorbidity score are statistically significant independent predictors of poor prognosis.21

PAGE BREAK

In other countries, as many of 15% of patients with advanced CKD and comorbidities choose a medical management without dialysis pathway (see Table 2).25 That number in the United States is 1% to 2%. In a recent study, approximately two-thirds of U.S. nephrologists indicated they did not even discuss or offer medical management without dialysis to advanced patients with CKD in their practices.26 To better implement shared decision-making into the care of patients with kidney disease, nephrology clinicians will need to become more familiar with the limited benefit of dialysis to certain patient groups and the ethics of justifying medical management without dialysis to these patients. In a qualitative study of nephrologists’ attitudes toward medical management without dialysis, most said they saw a conflict with their perceived role as one of instilling hope and offering treatment to improve symptoms.26

Many considered medical management without dialysis to be “no care” and something which would cause them moral distress if they offered it. The nephrologists also cited institutional barriers to discussing medical management without dialysis including an absence of time, lack of protocols to provide such care, financial incentives to start dialysis, and the need for greater coordination of care for such patients among nephrology, primary care, social work and hospice. There is a need for further education of nephrologists about medical management without dialysis so these barriers to envisioning it as a reasonable and justifiable treatment for certain patients are overcome.27

The 2013 KDIGO Controversies Conference on Supportive Care participants recommended the term “comprehensive conservative care” to describe active medical management with dialysis. They noted it to include all the elements listed in Table 1.28 One challenge to improve patient-centered end-of-life care for advanced kidney patients in the U.S. is for nephrology practices to establish robust medical management without dialysis programs.

Communication skills for serious illness conversations are one of the most needed supportive care skills in the nephrology and dialysis community. Various programs teach these skills, such as Respecting Choices, VitalTalk, the Serious Illness Care Program and the Veterans Affairs Goals of Care Conversation Program. These have in common many questions for a serious illness conversation (see Table 2) from which medical management without dialysis could be identified as the preferred choice of older patients with significant comorbidities. Through these conversations, nephrology clinicians will be in a better position to identify and respect patients’ wishes for the end of life.

PAGE BREAK

The medical literature describes several positive outcomes from serious illness conversations in which advance care planning occurs (see Table 3).29,30 Table 4 presents the elements of a comprehensive supportive care program that most dialysis centers will want to implement incrementally.

Conclusion

Although there is much to do to improve supportive care for patients with advanced CKD and ESRD, there is every reason to think the nephrology community will get the job done, especially with the increasing emphasis in the ESRD Quality Incentive Program on patient-centered, value-based measures such as those on pain, depression and the patient and family’s experience of care. This article series will point to innovations in kidney supportive care that will enable nephrology clinicians to develop primary supportive care skills. The goal is to translate innovations into practice to better assess and treat pain and other symptoms, better identify seriously ill patients with CKD and ESRD, better communicate and conduct serious illness conversations, establish medical management without dialysis programs and refer patients to hospice in a timelier manner.

The goals are to provide patients with the care that matters most to them, respectful of and responsive to individual patient preferences, needs and values and ensures patient values guide all clinical decisions.18

PAGE BREAK