Nephrologists have made limited progress in offering supportive care
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In the 1990s, leadership of the Renal Physicians Association and the American Society of Nephrology authorized development of Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis.
They authorized the clinical practice guideline because nephrologists increasingly reported being asked to dialyze older patients for whom they perceived marginal benefit. Before it was finalized and published in 2000, the working group that crafted Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis (hereinafter the shared decision-making guideline), heeded the advice of the 1991 Institute of Medicine report, Kidney Failure and the Federal Government, in which the Committee for the Study of the Medicare End-Stage Renal Disease Program observed that there is “an increasing number of patients [starting dialysis] with limited survival possibilities and relatively poor quality of life.”
They recommended the development of a clinical practice guideline for evaluating patients for whom the burdens of renal replacement therapy may substantially outweigh the benefits.
In recognition of the upcoming 25th anniversary of the guideline, it is worthwhile to look back and be reminded of the progress the nephrology community has made and the remaining challenges in caring for older patients with advanced chronic kidney disease.
Older patients
The work group that drafted the first edition of the shared decision-making guideline was prescient and noted the following trends:
Patients aged 75 to 84 years had the greatest increase in incidence and the most comorbid conditions. They were at the greatest risk for developing serious illnesses and choosing to withdraw from dialysis.
The extent of comorbidity among patients on dialysis was substantial: diabetes mellitus, 50%; coronary artery disease, 42%; congestive heart failure, 40%; peripheral vascular disease, 23% and malnutrition, 19%. In addition, 5% were unable to ambulate and 1% could not transfer without assistance (the inability to transfer independently was the most potent harbinger of a poor prognosis in a French study).
In addition to comorbidities, age, nutritional status and functional status were identified as strong predictors of a worse prognosis.
Ten years later, in consideration of these observations, the work group recommended palliative care for all patients who decided not to start or to stop dialysis. They made this recommendation 6 years before hospice and palliative medicine were recognized as a subspeciality by the American Board of Medical Specialties. They recognized that clinicians with expertise in palliative medicine should be involved in managing the medical, psychosocial and spiritual aspects of end-of-life care for these patients and their families.
A note here about terminology is relevant. The term “supportive care” is used instead of “palliative care” in much of the recent medical literature as it is the name preferred by patients and health care providers in specialties other than palliative medicine. Despite the understanding by palliative care specialists that it is appropriate for patients of any age and stage of illness, patients, families and other health care providers often believe its focus is solely on terminal care for dying patients.
The term “palliative care” is reserved for treatment provided by palliative care specialists, and kidney supportive care is more often provided by health care providers who are primary care physicians, or in the case of patients with kidney disease, nephrologists.
Shared decision-making
The work group anticipated the large role that shared decision-making would play in the dialysis decision-making process. They chose shared decision-making as the first of their nine recommendations in the guideline. They emphasized that the health care provider and the patient should work together to reach decisions that are individualized to the patient’s values and preferences after the health care provider has fully informed the patient of all the treatment options with their attendant benefits and risks.
In the second edition of the guidelines, released in 2010, the RPA work group was cognizant of the enhanced role that shared decision-making had assumed in the practice of medicine. “Shared decision-making is the recognized preferred model for medical decision-making because it addresses the ethical need to fully inform patients about the risks and benefits of treatments, as well as the need to ensure that patients’ values and preferences play a prominent role,” the group wrote in the guideline.
Shared decision-making is a key component of palliative care; it is a process through which patient-centered care is respectful of and responsive to individual patient preferences, needs and values can be achieved.
Participants in a Kidney Disease: Improving Global Outcomes Controversies Conference in 2019 observed it was time to move away from a “one-size-fits-all” approach and incorporate individual patient preferences into kidney failure treatment decisions.
In 2020, an International Society of Nephrology work group mapped out integrated care for patients with kidney disease and included kidney supportive care as a key component. They used the WHO definition of supportive care that is based on palliative care principles.
In January, the International Society of Nephrology reported consensus definitions of kidney supportive care and conservative kidney management and identified key considerations for the development of kidney supportive care programs. They proposed indicators to help identify patients who might be appropriate for conservative kidney management or, as patient advisors to the Coalition for Supportive Care of Kidney Patients prefer, “active medical care without dialysis.”
Low uptake
Despite support from nephrology societies and availability of the RPA guideline, at least three studies suggest that the nephrology community has not implemented shared decision-making optimally. In a study published in 2019 of 851 Veterans Administration patients with advanced CKD who chose not to start dialysis, the researchers found that these patients faced “immense pressure” to change their mind and start dialysis and that there is a “powerful default” leading to dialysis. In 2020, the same research group found that nephrologists did not have the infrastructure to care for patients who decided not to start dialysis and that they had to help patients navigate a health care system unprepared to deliver active medical care without dialysis.
In an interview study of 35 nephrologists, most reported they had not discussed active medical care without dialysis with their patients who had advanced CKD. Many equated active medical care without dialysis as “no care.”
This finding reinforces earlier studies in which patients reported that nephrologists did not inform them that they had a choice other than starting dialysis.
Next steps
The three remaining challenges for widespread implementation of kidney supportive care are to: 1) educate nephrology clinicians so they have buy-in that certain older patients with advanced CKD may not benefit from dialysis and that it is their ethical responsibility to inform them about active medical care without dialysis as an option; 2) train nephrology clinicians in kidney supportive care skills; and 3) develop a scalable infrastructure model for active medical care without dialysis so that patients’ symptoms are well managed, and they and their families are supported in their decision and receive treatment through the end of life that honors their wishes.
What are the barriers that have kept the recommendations of the guideline from being fully implemented? There are cultural, ethical and economic reasons that have limited uptake of the guidelines. First, medical anthropologists have described the “biomedicalization of aging” in which the United States has over time adopted the practice of routinely offering older and older patients treatments that would have been unthinkable for someone their age in the past. The public has accepted this phenomenon and often puts pressure on clinicians to treat older patients who have frailty.
Second, many nephrology clinicians are ethically conflicted and report moral distress if they do not dialyze an older patient even though the patient may not live much longer and might suffer more with treatment. They are not providing patients with shared decision-making, and thus they are compromising the informed consent process. At annual meetings and in communications, nephrology professional societies for physicians, nurses and social workers need to strongly call for robust shared decision-making in which patients are informed of all treatment options, including active medical care without dialysis, and decisions are based on patient values and preferences.
Third, there are perverse financial incentives to nephrology clinicians and dialysis organizations to put as many patients as possible on dialysis. The provision of supportive care and hospice to seriously ill patients with advanced CKD and dialysis is disincentivised by CMS reimbursement policies.
The leadership that led to the shared decision-making clinical practice guideline is needed again to move the care of older patients with kidney disease forward. The nephrology community has dropped the ball on shared decision-making. It is time to pick it up and run with it again.
- For more information:
- Alvin H. Moss, MD, is professor of medicine and director of the Center for Health Ethics and Law Sections of Nephrology, Geriatrics and Palliative Medicine at West Virginia University Health Sciences Center, Morgantown, West Virginia. He can be reached at amoss@hsc.wvu.edu.
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