The Coalition for Supportive Care of Kidney Patients convened subject matter experts (SMEs) to assess the current state of palliative care for pre-dialysis (chronic kidney disease) and end-stage renal disease patients (stages 3-5). The SMEs noted that in the final month of life, dialysis patients have the higher percentage of hospitalizations, longer length of stay, greater intensive care admissions, and higher number of deaths in hospitals than cancer or heart failure patients, but use hospice only half as much as these two groups. The group identified a strategic approach and framework for achieving specific aims to improve palliative care education of health care providers, raise awareness of supportive care resources, define palliative care skills for nephrologists, and continue the implementation of shared decision-making for individualized patient-centered care.
Individual with end-stage renal disease are arguably among the sickest of patients with a chronic illness. They have a symptom burden comparable to patients with AIDS and cancer and an age-matched life expectancy only one-quarter that of the general population. 1 In the final month of life, compared to cancer and congestive heart failure patients, dialysis patients 65 years of age or older experience very high rates of hospitalization, ICU admission, intensive procedures, death in the hospital, and lower use of hospice. 2 These use rates are considered inconsistent with quality end-of-life care. 3
The Mid-Atlantic Renal Coalition (MARC) has for some time endorsed the concept that supportive care is an essential component of an effective quality improvement program for dialysis patients. Since 2004, when it first held a national conference, Caring through the end: Palliative care along the continuum of CKD, MARC has provided leadership for the Kidney End-of-Life Care Coalition. The Coalition was established to address the growing need for resources that the dialysis centers could draw upon for information about palliative care, advance care directives, understanding ethical and legal issues and to help create a framework for thinking about patient-centered care.
In March 2013, MARC convened a panel of subject matter experts in Pittsburgh to develop a strategy for improving supportive care for kidney patients. The panel determined that in the United States, supportive care does not receive the same attention as other aspects of dialysis patient clinical management, and yet it remains one of the more pressing concerns to patients and family members.
The meeting was designed to:
- Define leadership and mission for the next phase of Coalition initiatives
- Assess the current state of palliative care for CKD and ESRD patients from the diverse perspectives of the subject matter experts
- Identify key strategic steps to further the implementation of palliative care in the treatment of CKD and ESRD patients
One of the first items of business was to address the consensus that the term “end-of-life” is no longer appropriate for the coalition. After lengthy discussion, a new name was chosen: Coalition for Supportive Care of Kidney Patients. Supportive care is the continuum of palliative care, from the time of diagnosis through the end of life, and is focused on providing patients with relief from the symptoms, pain, and stress of serious illness. The Coalition’s mission was confirmed: To promote effective interchange among patients, families, health care professionals, and payers to ensure the provision of patient-centered supportive care for patients with kidney disease.
At the meeting in Pittsburgh, participants were asked to discuss the current state of palliative care from their perspective. Several specifics emerged:
- There is noteworthy variation in hospice use within the 18 Network organizations.
- The percentage of hospice use among dialysis patients has increased from 18.8% in 2007 to 22.9% in 2010, but remains approximately half the national average for Medicare beneficiaries.
- At least one study indicates that patients prefer good quality of life to mere longevity.
- Sixteen percent to 32% of ESRD patients have low health literacy, which impacts their ability to understand and address end-of-life decision making.
- Minorities and low-income persons encounter barriers in accessing effective end-of-life care.
- Nephrologists are uncomfortable informing patients that renal replacement therapy (RRT) will not provide a cure, even when a patient’s diagnosis and other co-morbidities indicate he/she will die soon. RRT is life extending, not life-saving.
- Hospice acceptance of ESRD patients is variable and difficult.
- In the final month of life, dialysis patients have a higher percentage of hospitalizations, longer length of stay, greater intensive care admissions, and higher number of deaths in hospitals than cancer or heart failure patients, but use hospice only half as much as these two groups.
- In a survey of social workers belonging to the Council of Nephrology Social Workers, 62% rated end-of-life care currently being provided as “fair” or “has a long way to go.”
- One barrier to adequate end-of-life care, as reported in the CNSW survey, is the lack of formal assessment of patients who are nearing the end of life.
- Dialysis social workers overwhelmingly point to the need for more education of patients, their families, staff, and physicians.
- The number of cases of patients “dying on dialysis” is increasing. These are patients with vascular dementia, weight loss, limited decision-making capacity, and/or multiple life-threatening co-morbidities, and who are nursing home residents or wheelchair-dependent.
The recurring theme that emerged is the need for education and training for practicing nephrologists, medical directors, renal fellows, dialysis unit staff, and patients and their families. While the tools and resources may be available, as evidenced by the Coalition’s website and the Renal Physician Association’s Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis clinical practice guideline, the guideline has not been widely disseminated or embraced by the nephrology community. Even primary care physicians, who may be best suited to have the difficult conversations with patients, are not always trained or comfortable with explaining dialysis and palliative care options.
One approach discussed was an awareness campaign building on the framework set forth by the Commonwealth Fund.
The components of this framework include:
- Highlight the evidence base and relative simplicity of recommended practices.
- Align the campaign with the strategic goals of the adopting organizations.
- Increase recruitment by integrating opinion leaders into the enrollment process and employing a nodal organizational structure.
- Form a coalition of credible campaign sponsors.
- Generate a threshold of participating organizations that maximizes network exchanges.
- Develop practical implementation tools and guides for key stakeholder groups.
- Create networks to foster learning opportunities.
- Incorporate monitoring and evaluation of milestones and goals. 4
The need for additional research is evident. The following areas of further exploration/action were identified:
- Conservative management options are available in other countries, particularly the UK, but the United States has little data on time-limited trials or the number of patients who elect to withdraw from dialysis.
- While primary care physicians may be best suited to have the end-of-life discussions, there is little data on their role with patients who have initiated dialysis and little data on understanding communication channels between primary care and nephrologists.
- More understanding of the regional variations in hospice use, and rate of withdrawal of dialysis, is needed.
- Better understanding is needed of the desires of patients at the end-of-life, including what their goals of care are.
- The supportive care philosophy, which moves the patient and family to the center stage, needs to be more widely embraced by the health care providers who treat patients with CKD and ESRD.
- What do patients “hear” when their nephrologist talks with them about prognosis, understanding the future, and their treatment options?
- Is there a consensus that end-of-life care can be improved by acquainting patients with their prognoses and having ongoing conversations about goals and preferences?
- Is there a perception among patients that palliative care = hospice = death?
- There is a need to further examine health literacy with regard to end-of-life preferences in the renal population.
- The role of depression in requesting withdrawal from dialysis needs to be better explored and examined.
A marketing strategy might include promotion and dissemination of the 7 “rights:”
- Have the right conversation
- Cover the right information and topics
- Talk with the right person
- At the right time
- At the right place
- In the right way
- Complete the right documents
The Coalition aims to accomplish the following over the next 18 months:
- Confirm existing memberships, identify new partner organizations, and solidify commitments to the Coalition.
- Build on recently published articles and the 2010 shared decision-making clinical practice guideline and develop evidence-based recommended practices for dissemination via Coalition members.
- Initiate a culture change that accepts supportive care as an appropriate component of treatment for CKD and ESRD patients and their families through education of nephrologists, renal fellows, nephrology nurses, social workers, beneficiaries, and the medical community at large.
- Raise awareness of available supportive care resources for kidney patients and families and provide technical assistance through the website, publications, webinars, and speaking engagements.
- Develop tools for point-of-care decision support for nephrologists.
- Define basic palliative care skills for nephrologists.
- Develop consensus on CKD and ESRD cases requiring formal specialist palliative care consultation
With this strategy in place, the Coalition for Supportive Care of Kidney Patients will seek to improve the infrastructure in which kidney patients and their families experience care throughout the entire span of life. More information about the Coalition can be found on the website: www.kidneysupportivecare.org
1. Moss AH. Kidney failure. In: Emanuel LL, Librach SL (eds) Palliative Care: Core Skills and Clinical Competencies, Philadelphia, Saunders Elsevier, 2007, pp 355–369
2. Wong SPY, Kreuter W, O’Hare AM. Treatment Intensity at the End of Life in Older Adults Receiving Long-term Dialysis. Arch Intern Med 2012;172:661-663
3. Cohen LM, Moss AH, Weisbord S, Germain MG. Renal palliative care. J Palliat Med 2006;9:977-992
4. The Commonwealth Fund Issue Brief. Blueprint for the Dissemination of Evidence-Based Practices in Health Care. May 2010