Overview
Measure Overview
For people on chronic dialysis, discussion of patient life goals with their dialysis facility care team can lead to better understanding of these goals at the facility-, provider- and patient-levels, facilitating decision making that explicitly takes these goals into consideration and enhances patient shared decision making about modality selection, vascular access, and other treatment options for their dialysis and ESRD care. Discussing personal life goals that are important to the patient also results in patient-centered care which is an outcome in its own right.[1] This measure is intended to provide information to users about one particular aspect of patient-centered care, identification and discussion of patient life goals with those delivering care.
We spoke with both ESRD patients and nephrology physicians to directly elicit stakeholder feedback on the importance and usability of the D-PaLS PRO-PM. We held 3 focus groups with patients in December 2023. Each focus group included 7-9 participants with a final overall attendance of 25 patient participants. The groups included broad representation across the ESRD treatment modalities including in-center hemodialysis, home hemodialysis, peritoneal dialysis, and kidney transplantation. Key takeaways from the three focus groups about the usability and importance of the Patient Life Goals Survey (PaLS) include:
- The Patient Life Goals Survey (PaLS) is important
- It is important for facilities to ask about life goals during care planning
- Focus group participants would recommend the PaLS to other dialysis patients
- PaLS is easy to complete
- PaLS should be taken at least annually (or more frequently)
- PaLS should be administered anonymously
- Focus group participants also supported public reporting of facility-level PaLS scores
The feedback we received from the focus groups and the TEP indicate the PaLS is important and will provide a way for providers, payers, and others to assess how well a facility is doing in identifying and discussing life goals with ESRD chronic dialysis patients as part of the treatment planning process. A discussion of life goals between a patient and his/her/their provider(s) can inform modality option selection, such as a home dialysis therapy (home hemodialysis, peritoneal dialysis) or kidney transplant, and help ensure that modality selection is aligned with the patient's life goals. Results from the PaLS can also provide payers and other stakeholders national level information about patients' experience with discussions of life goals (or absence of) with their care team, and whether patients feel their treatments are aligned with their life goals.
[1] Blake, PG., and Brown, EA. Person-centered peritoneal dialysis prescription and the role of shared decision-making. 2020. Peritoneal Dialysis Int, published ahead of print, 1-8.
CMS is considering adding the Dialysis Facility Discussion of Patient Life Goals (D-PaLS) measure to the End-Stage Renal Disease Quality Incentive Program (ESRD QIP) as a new clinical quality measure. This patient-reported outcome measure reports patients’ satisfaction with how well their care team discussed life goals as part of treatment planning using the Patient Life Goals Survey instrument and allows facility-level comparison of patient satisfaction around discussion of life goals by generation of a t-score. This measure will fill a gap in the Patient and Family Engagement domain.
Measure previously submitted to Measure Applications Partnership (MAP) Workgroup or Pre-Rulemaking Measure Review (PRMR), refined, and resubmitted per MAP or PRMR recommendation.
Not Endorsed by the Primary Care and Chronic Illness committee in the Spring 2023 cycle based on concerns that the evidence provided did not show a clear patient desire for this type of measurement and there was a lack of alignment with patient-preferred outcomes.
Not Applicable
Measure Specification
The numerator is the number of eligible patients from the denominator that had a t-score of >40.
Details: We begin with the number of patients at a given facility that took the PaLS survey and completed at least five of the six Likert-type scorable PaLS items that comprise the “quality of facility care team discussions” score. The response options for these six items are scored from 1 to 5. Higher scores indicate greater overall patient reported agreement that the care team is asking about and discussing life goals with the patient. IRT scores are initially estimated on the theta metric (M=0; SD=1). In order to enhance the clinical utility of our PaLS measure, we converted theta scores to standardized scores on the t-score metric (M=50; SD=10). The conversion from a theta score to a t-score can be made using the following linear transformation: t-score=(theta x 10)+50. This patient-level t-score represents a patient’s perceptions about how well the facility is doing in discussing life goals as part of the treatment planning process.
Next, we sum the number of eligible patients at the facility with a t-score of >40. This facility-level score represents how overall patients’ perceptions about how well the facility is doing in discussing life goals as part of the treatment planning process.
Scoring notes: For response pattern scoring, patients need to answer at least one of the Likert-scale items to receive a t-score. For look-up table-based scoring, patients must answer at least five of the six Likert-type scorable PaLS items to receive a t-score.
None
Not applicable
All adult chronic dialysis patients (>18 y/o) treated by the facility (both In-Center and Home Dialysis) for greater than 90 days during the reporting period.
Details: To be in the denominator, chronic dialysis patients must be (a) at least 18 years of age; (b) receiving long-term dialysis in the United States or any U.S. Territory for greater than 90 days during the reporting period, and (c) not missing a survey. Receiving long-term dialysis in the 90-day period was selected in order to allow time for the patient to stabilize after beginning chronic dialysis, and for the dialysis care team to initiate discussions about patient life goals as part of the treatment planning process. This 90-day period also reduces facility-related burden.
To construct our denominator for testing, we used the following data from survey participants: first name, last name, and birthdate. Participants were given a pre-filled out form that included their facility name and CCN so that we could match them to EQRS clinical and administrative data.
We also used CMS administrative data to confirm dialysis modality for participants (in-center hemodialysis, home hemodialysis, peritoneal dialysis, or kidney transplant). In some cases, we could not match participants to their EQRS data. In these cases, participants were not included in the analysis using dialysis modality.
At present, the D-PaLS is available in both English and Spanish.
None
Patients are excluded from the denominator if at the time of the survey any of the following are true: they are not on chronic dialysis; are less than 18 years of age; not receiving long-term dialysis in the United States or any U.S. Territory for greater than 90 days during the reporting period; patient has a kidney transplant with a functioning allograft; and patient recovered renal function, or is lost to follow up. In our testing we also excluded duplicate patient surveys.
Items to calculate these exclusions for this testing are derived from CMS administrative and EQRS data.
Patients with a missing survey are also excluded.
Digital-Administrative systems: Administrative Data (non-claims)
Digital-Administrative systems: Claims Data
Meaningfulness
Importance
The D-PaLS PRO-PM reports on the level of patient satisfaction with the facility about care team discussions regarding life goals during the treatment planning process using the Patient Life Goals Survey instrument. Satisfaction is measured by the patient-level t-score, with a t-score >40 indicating patients are satisfied with those discussions. The performance-based measure is the percentage of adult chronic dialysis patients at a given ESRD facility who have a t-score of greater than 40, which indicates how many patients at the facility are satisfied with dialysis facility care team discussions about life goals. As outlined in the literature cited for the measure rationale, the integration of patient life goals into care planning for individuals on chronic dialysis is a critical component of high-quality, patient-centered care. Evidence from peer-reviewed studies, systematic reviews, and clinical practice guidelines demonstrate that gathering and incorporating patient life goals into treatment decisions enhances shared decision-making, aligns care with patient values, and improves both satisfaction and outcomes for people with end-stage renal disease (ESRD). Such shared decision-making also has the potential to increase uptake of home dialysis modalities and transplant, two CMS priorities for improving care and outcomes for people with ESRD. The developer cites research that consistently finds that patients value discussions about their life goals and that such conversations are often lacking in current practice. Focus groups with ESRD patients and input from a multidisciplinary technical expert panel confirms the importance and usability of the PaLS. Patients across diverse dialysis modalities endorsed the value of discussing life goals during care planning, found the PaLS easy to complete, and recommended its routine use.
Conformance
The D-PaLS PRO-PM reports on the level of patient satisfaction with the facility about care team discussions regarding life goals during the treatment planning process using the Patient Life Goals Survey instrument. Satisfaction is measured by the patient-level t-score, with a t-score >40 indicating patients are satisfied with those discussions. The performance-based measure is the percentage of adult chronic dialysis patients at a given ESRD facility who have a t-score of greater than 40, which indicates how many patients at the facility are satisfied with dialysis facility care team discussions about life goals. As outlined in the literature cited for the measure rationale, the integration of patient life goals into care planning for individuals on chronic dialysis is a critical component of high-quality, patient-centered care. Evidence from peer-reviewed studies, systematic reviews, and clinical practice guidelines demonstrate that gathering and incorporating patient life goals into treatment decisions enhances shared decision-making, aligns care with patient values, and improves both satisfaction and outcomes for people with end-stage renal disease (ESRD). Such shared decision-making also has the potential to increase uptake of home dialysis modalities and transplant, two CMS priorities for improving care and outcomes for people with ESRD. The developer cites research that consistently finds that patients value discussions about their life goals and that such conversations are often lacking in current practice. Focus groups with ESRD patients and input from a multidisciplinary technical expert panel confirms the importance and usability of the PaLS. Patients across diverse dialysis modalities endorsed the value of discussing life goals during care planning, found the PaLS easy to complete, and recommended its routine use.
Feasibility
Not an eCQM
Feasibility: For this measure, some data elements are in structured fields in electronic sources. For general implementation, the survey can be administered in paper or electronic mode. Feasibility testing showed minimal burden on reporting entities, and the measure can be implemented without significant workflow changes because data elements are generated or collected and used by health care personnel during the provision of care. While the developer generally characterized the measure as feasible, they did note multiple barriers to facility-level data collection for the D-PaLS Survey that should be considered potential threats to feasibility, including limited facility and patient motivation, inaccurate patient address data, and poor engagement from dialysis organizations. Only one national dialysis corporation agreed to share recruitment materials, and, even then, only 30% of its facilities participated. The limited engagement of dialysis facilities is a common barrier to development of measures and is not unique to this development effort. A revised direct-to-patient strategy also failed to improve response rates. The use of this measure has the potential to increase the burden on patients who may be asked to complete multiple patient-reported instruments for their clinical visit. CMS ESRD QIP leadership indicated that they plan to address these known implementation challenges during rulemaking finalization.
Considerations for the committee: Are there potential mitigations strategies or implementation resources that should be considered to address threats to feasibility of this measure within the selected program?
Validity
Empiric Validity, Face Validity [Source: MERIT Submission Form, Facility Discussion of Patient Life Goals Documentation Form]
U.S. Chronic Dialysis Population (patient level). The measure testing was performed on a sample that reflected the U.S. chronic dialysis population at the patient level. [Source: MERIT Submission Form Supplemental Testing Attachment]
Yes
Focus group survey results from 2023 and TEP deliberations in 2024 support the face validity of the measure.
To establish empirical validity, the developer tested validity of the PaLS instrument using methods described below. However, committee members should note that the empirical testing focused on the PaLS tool scores themselves, rather than the overall measure score that incorporates PaLS scores in its calculation. The developer should conduct further testing to evaluate the empirical validity of the PRO-PM score specifically, rather than limiting analysis to validation of the PaLS tool itself.
- Known-groups validity testing showed that patients on home dialysis reported greater life goals satisfaction than those on in-center dialysis in the calibration sample (effect size = 0.50, moderate). Additionally, participants with poor health-related quality of life (HRQOL) consistently reported greater dissatisfaction with life goals discussions than those with good HRQOL across all Patient-Reported Outcome Measurement Information System (PROMIS) domains examined.
- The developer found no evidence of floor or ceiling effects in both calibration and validation samples. In the calibration and validation testing samples, floor and ceiling effects were both below 20% (floor effects 0.39% and ceiling effects 6.1% in the calibration sample; floor effects 0.48% and ceiling effects 5.8% in the validation testing sample), indicating that the PaLS captured a broad range of patient responses without clustering at the extremes.
- Convergent and discriminant validity showed that the patient-level PaLS t-score was moderately correlated (r=0.46) with PROMIS Meaning and Purpose scores, supporting convergent validity as hypothesized. All other correlations between PaLS scores and PROMIS measures were below 0.36, providing evidence of discriminant validity.
- Responsiveness in the validation testing sample showed that the PaLS t-score was responsive to changes in participants’ life circumstances over a 3-month period. Participants who experienced a higher number of life events, or more impactful life events, showed significantly greater changes in their PaLS t-scores, indicating increased dissatisfaction with care team discussions about life goals. The developer posits that major life events prompt patients to re-evaluate their life goals and treatment plans, which highlights the importance of revisiting discussions about life goals during these periods. The developer also explored responsiveness at 6 months; however, this was not found to be statistically significant.
Calibration and validation testing showed PaLS t-scores changed meaningfully for a substantial proportion of participants over time, indicating that patients’ life goals can shift and should be discussed regularly with the care team. The PaLS survey can differentiate patient responses across time points. However, statistical analysis revealed negligible or small standardized response means (SRMs) for related health domains, and changes in PROMIS measure scores did not predict changes in PaLS t-scores. This suggests that changes in physical or mental health, or sense of meaning and purpose, do not necessarily correspond to changes in life goals. Additionally, the developer noted that there was a low level of missing data which did not bias performance results since a t-score can still be calculated even if one item is missing from the six Likert-type scorable PaLS items.
Reliability
Random Split-Half Correlation [Source: MERIT Submission Form]
U.S. Chronic Dialysis Population (patient level). The measure testing was performed on a sample that reflected the U.S. chronic dialysis population at the patient level.
In the calibration and validation testing samples, response pattern reliability, Cronbach’s alpha reliability, and marginal reliability all supported the internal consistency reliability of the set of six Likert-type scorable items included in the PaLS instrument (i.e., all values were ≥0.84, indicating “very good” internal consistency). Additionally, all measures of reliability were consistent across both testing samples. However, further reliability testing of the PRO-PM measure across facilities should be conducted to establish this measure as capable of consistently differentiating quality of care across measured entities.
No additional reliability analyses were performed.
Usability
Measure usability in the selected program and settings is not documented as the developer noted the measure is not yet implemented in a public reporting program. [Source: MERIT Submission Form]
While the measure submission materials do not address the measure’s usability in the selected program and settings, the developer noted that most ESRD patient focus group participants supported public reporting of PaLS scores to increase transparency and motivate facility improvement, although some worried about negative reactions to poor scores. Additionally, most focus group participants supported the periodic assessment of the PaLS, ranging from more often in the year (e.g., every 3 months) to annually. The TEP agreed that the PaLS instrument is important and noted that life goals conversations are not happening consistently among dialysis patients. The developer did not identify any potential unintended consequences if implemented within the ESRD QIP program. The developer noted that they faced multiple barriers to facility-level data collection for the D-PaLS Survey, including limited facility and patient motivation, inaccurate patient address data, and poor engagement from dialysis organizations. Only one national dialysis corporation agreed to share recruitment materials, and, even then, only 30% of its facilities participated. A revised direct-to-patient strategy also failed to improve response rates. The developer may wish to consider additional use of an implementation guide to mitigate these challenges.
Appropriateness of Scale
Overview
None specified
This measure reports on patients’ satisfaction with their care team and whether the care team asked about life goals and discussed these life goals as part of treatment planning to the satisfaction of the patient. Rural facilities, under-resourced facilities, and facilities that serve complex or disadvantaged populations are still expected to have treatment planning discussions with patients; therefore, the measure does not adjust for these facility or patient characteristics. This approach is also consistent with CMS regulations for dialysis facilities that require discussions about kidney replacement modality and other aspects of treatment, including consideration of how treatment can be planned to best support the patient’s personal values and life goals.
Considerations for the committee: The committee should consider whether public reporting of PaLS scores creates accountability without penalizing facilities that care for complex or disadvantaged populations.
Time to Value Realization
Overview
None specified
While the measure developer highlights potential benefits of the measure to patient populations, there may be need for further examination of near- and long-term impacts of this measure after implementation.
Considerations for the committee:
- What are the potential near- and long-term impacts of this measure on measured entities, proposed CMS programs, and patient populations?
- Will benefits and burdens associated with this measure be realized within an appropriate implementation time frame?
- How will this measure mature through revisions in the future if added to ESRD QIP’s measure sets?
Public Comments
Additional consideration of dialysis centers in low income areas
There is a disproportionate number of dialysis centers located in communities of color that are typically low socioeconomic communities. It is critically important to ensure facilities that serve such populations are given consideration for the additional services they may provide related to health related social drivers that ultimately impact the life goals and expectations these healthcare consumers may express.
Geographic location
There is a disproportionate number of dialysis centers located in communities of color that are typically low socioeconomic communities. It is critically important to ensure facilities that serve such populations are given consideration for the additional services they may provide related to health related social drivers that ultimately impact the life goals and expectations these healthcare consumers.
Dialysis End of Life Goals
High risk population who could benefit from end of life discussions. Holding providers accountable to review patients specific goals of care and compare themselves within peer groups helps drive quality and compliance.
Dialysis patient life goals
As a renal patient of 28 years who spent time on dialysis i can truly say and other patients would agree dialysis has a mixture of bad days and better days and it is a tough thing to deal with knowing this is your life support on a machine .
Some people on dialysis may do well enough that while on dialysis they work, or volunteer and do pretty good and may consider having some life goals, Usually some goal involves living as best you can with ERSD. Living is the goal as we are bombarded by things that can and do go wrong in dialysis, infections, surgeries, and other chronic health issues.
Many are suffering from depression as a result of being on dialysis. If you ask about life goals may not be able to identify one goal. Their goal is to make it to the next day if that. You cannot utilize such a subjective study with such a varied sample of people who are on dialysis. There is with a list of endless varieties of people and factors that could rule out whether someone wants to even address life goals and fill out another health survey. For example. Someone with lack of family support system may not care to make life goals and may feel they have no one or nothing to live for. Maybe. A person with grandchildren has a goal to see them grow up or they may feel they are a burden to others and would not be inclined to fill out a survey on life goals.
Bottom line is this type of health survey is not conducive to improving life for those on dialysis
.As renal patients we are already inundated with surveys from our healthcare team. Many will likely not answer the durvey creating a smaller sample size.
Thank you,
Dawn Cerruto renal patient 28 years.
discussion of patient life goals
I am kidney transplant patient and former dialysis patient. I question the use of surveying dialysis patients as a means of enhancing their dialysis treatment. My concerns are outlined below:
While I think it is critical…
While I think it is critical for patients with kidney disease and kidney failure to receive continued goals of care conversations, as others have mentioned, I worry about the lack of questions related to symptom burden (physical, emotional, spiritual) included on this measure. Prior published evidence and my own experience as a nephrologist supports that patients with kidney disease have significant symptom burden, and being pain-free, as an example, is a known and frequently reported life goal by these patients.
Sanofi Comments
Sanofi US ("Sanofi") appreciates the opportunity to comment on the Centers for Medicare and Medicaid Services'(CMS) 2025 Measures Under Consideration (MUC) List.
Sanofi brings together world-class research and development in pursuit of leading health care solutions that serve several major therapeutic areas including vaccines, diabetes, chronic kidney disease, multiple sclerosis, cardiovascular disease, oncology, rare diseases, immunology, hemophilia, and over-the-counter (OTC) products. We are committed to discovering, developing, and making available to patients and their treating physicians innovative, effective, well tolerated, and high-quality treatments that fulfill vital health care needs.
Sanofi supports the Dialysis Facility Discussion of Patient Life Goals (PaLS) measure and its inclusion on the 2025 CMS Measures Under Consideration (MUC) list. We believe this measure would promote essential discussions between dialysis patients and care teams, ultimately improving goal-concordant treatment planning and outcomes.
As we have commented previously in response to the Request for Information: Health and Safety Requirements for Transplant Programs, Organ Procurement Organizations, and End-Stage Renal Disease Facilities (RFI) and the Alternative Payment Model Updates and the Increasing Organ Transplant Access (IOTA) Model, we recognize the immense value that kidney transplantation brings to patients suffering from kidney disease, including improved quality of life, enhanced survival rates, and reduced healthcare system costs. Outcomes from kidney transplants for patients with kidney disease can include better quality of life, higher survival rates, and lower healthcare system costs, but not enough patients are receiving transplants.
While we support the measure as proposed, we believe it can be strengthened to better serve patients by ensuring comprehensive discussion of all treatment modalities. Sanofi believes that life goals discussions must explicitly include transplant evaluation and pursuit as a core option, given overwhelming evidence of superior long-term survival, quality of life, and cost-effectiveness versus maintenance dialysis.[1] We recommend revising survey items or instructions to prompt patients on whether care teams discussed transplant waitlisting and living donor identification. This ensures the measure captures comprehensive shared decision-making, not just dialysis-centric planning.
When finalized for End-Stage Renal Disease Quality Incentive Program (ESRD QIP), we urge CMS to require nephrologist involvement in survey administration protocols—either directly during clinic visits or via pre-survey education on transplant pathways. Nephrologists, as transplant referral gatekeepers, can contextualize life goals around modality options, boosting response accuracy and actionability. Third-party vendors should coordinate with nephrology teams to maximize clinical impact.
We appreciate CMS's leadership in advancing patient-reported outcomes (PROs) and patient-centered care. We look forward to continued engagement and collaboration in pursuit of our shared goal of enhancing patient outcomes and advancing healthcare excellence.
[1] Schold, Jesse D.; Mohan, Sumit; Huml, Anne; Buccini, Laura D.; Sedor, John R.; Augustine, Joshua J.; Poggio, Emilio D. Failure to Advance Access to Kidney Transplantation over Two Decades in the United States. JASN 32(4):p 913-926, April 2021. | DOI: 10.1681/ASN.2020060888
MUC2025 D-PaLS PRO-PM
I am concerned about the potential use of perceived "life goals" in this measure. It seems like trying to pound a square peg into a round hole. It's asking and answering the wrong questions.
For context, I was born with and have lived with inherited polycystic kidney disease for 70 years. I was on dialysis until my 2021 transplant. My father also was born with this disease and lived 27 year with varying modalities of dialysis and transplants in order to stay alive to support his family and continue his ministry. Much of his medical experience was painful and downright miserable.
It seems obvious that patient-centered care should be the foundation of any and all medical treatment, such that dialysis might become more than just tolerable. But the notion that these survey results may affect medical care is disturbing in its implication that individual results could result in different levels of care. Aren't providers giving the best possible care to each patient who relies on them?
I respectfully urge that you reconsider the whole approach of this measure. It's a disjoint mismatch of issues. Thank you.
MUC2025-011 Dialysis Facility Discussion of Life Goals
ASN recognizes the importance of delivering patient-centered care, and the society applauds CMS for its recognition of assessing patient life goals, which is an important aspect of quality of life. However, ASN has several concerns with the measure as presented that would need to be addressed before the society is able to offer our support of its use in the ESRD QIP. As currently written, ASN cannot support its inclusion in the Medicare End-Stage Renal Disease (ESRD) Quality Incentive Program (QIP).
ASN notes that key technical specifications of the measure were not readily available for stakeholder review. In particular, the six survey questions referenced in the documentation were not provided by the Partnership for Quality Measurement (PQM). Without access to the full survey instrument, stakeholders cannot adequately evaluate the measure or provide meaningful input. In addition, testing of validity and reliability is not available at the facility level, which is another missing component that should be available to review prior to consideration of this measure for implementation.
The “MUC2025-011 Dialysis Facility Discussion of Life Goals” measure is not endorsed by a consensus-based entity. In its 2023 endorsement review, the measure failed to receive endorsement because it did not meet the required importance and evidence criteria, which are must-pass elements. ASN maintains that measures should receive endorsement before being adopted into the ESRD QIP.
The measure is not tied to actionable interventions and, thus, may not facilitate meaningful improvements for patients receiving dialysis. Capturing patient life goals without requiring follow-up action (i.e. referral to behavioral health, social work resources, or palliative care) to support these goals limits the measure’s ability to advance meaningful, patient-centered outcomes and does not align with CMS’s Meaningful Measures 2.0 initiative. Additionally, the measure does not account for instances where patient life goals may not align with evidence-based practice, creating potential tension between respecting patient preferences and ensuring high-quality clinical care (i.e., if a patient wishes to continue receiving dialysis for life sustaining care but states their life goals are consistent with shorter dialysis treatments, that may compromise dialysis adequacy).
Without linkage to high-quality communication and care adjustments, the PaLS survey risks becoming a “check-box measure” rather than driving substantive improvements in patient centered care. No current evidence exists that implementing life goals surveys in the dialysis population leads to improvements in communication, patient experience, patient well-being, or healthcare quality.
ASN is concerned that adding an additional survey requirement in the dialysis setting will worsen survey fatigue and undermine data validity. Patients receiving dialysis are already expected to complete the following surveys: a clinical depression questionnaire (e.g., PHQ-2/PHQ-9); Kidney Disease Quality of Life (KDQOL); ICH-CAHPS (twice a year); Patient Activation Measure (PAM) for Kidney Care Choices participants; dialysis facility specific surveys, such as wellness surveys, as well as CAHPS surveys every time they are discharged from a facility or have a procedure. Consistent with these concerns, testing conducted by the University of Michigan Kidney Epidemiology Cost Center (UM-KECC) yielded a response rate of 7%, with UM-KECC noting an “overall sense of survey fatigue present in the dialysis environment”. Furthermore, some elements may be redundant with the ICH-CAHPS surveys, which asks “In the last three months, how often did your kidney doctors explain things in a way that was easy for you to understand?[i]”
The measure submission lacks adequate discussion of administrative burden. It does not describe the resources required for training, data collection, or reporting, nor does it specify a minimum reporting threshold. In addition, full incorporation of the measure into the ESRD QIP would require integration into the End-Stage Renal Disease Quality Reporting System (EQRS), which would necessitate extensive lead time following the release of detailed technical specifications to support batch submission. Absent this information and planning, facilities cannot adequately assess feasibility or operational impact.
For these reasons, ASN has significant reservations regarding implementation of MUC2025-011 Dialysis Facility Discussion of Life Goals as outlined. ASN is open to partnering with CMS on further refinement of this measure.
[i] https://ichcahps.org/Survey-and-Protocols
Patient Life Goals Survey (PaLS) : A Patient's Perspective
As a patient who has lived with CKD for the entirety of my 51 years and did peritoneal dialysis (PD) for 2.5 years before receiving a life-saving transplant one year ago, I am concerned about the Patient Life Goals (PaLS). The survey is aspirational in nature and doesn’t acknowledge the realities of being on dialysis.
I first started dialysis when I went into acute kidney failure. Four liters of fluid were removed from my body during emergency thoracic surgery and a PD catheter was inserted. My goal at that point was to live to see my daughter graduate high school eight weeks later; it wasn’t guaranteed. To be honest, the only long-term goal I ever had while on dialysis was getting my transplant and getting off dialysis. Anything else that I was able to do during that time, such as helping my daughter move into her college dorm, was a short-term win that wasn’t had without excessive amounts of thought and planning to account for my new reality.
So much of the dialysis process is surviving day-to-day that it can be hard to think about long-term life goals. What I cared about while on dialysis were the big and small things that worry many of my fellow patients:
That being said, I consider myself very fortunate that I live a comfortable middle-class life where I have a job with insurance and I don’t have to worry about how I’m going to afford my care and pay my bills.
I’m also very fortunate that I have an amazing nephrologist whom I am very close with and the nurses at my dialysis clinic were also very warm and caring individuals. When I wanted to talk about my care and what it looked like from month to month or over the course of a few months, we would have a conversation, discuss what was feasible, and come up with an action plan. For example, when I wanted to skip dialysis treatment for a night or two while I was moving into her college dorm, I shared the ask with my team, we discussed it, and came up with a plan to help me achieve this short-term goal.
And that’s essentially where I think the PaLS falls short. A survey is a data point, patients are human. There are other metrics about the quality of care being provided at a dialysis center that easily be captured in a survey, assed, acted upon, and resurveyed to assess areas of improvement and then actual improvement because of change. Life goals do not fall into that category. Life goals are things that need to be discussed, heard, and then, if possible, acted upon. No matter whether they are big or small, short or long-term, life goals are personal, totally valid, and each patient should be treated as an individual, not a data point, when revealing them. If dialysis centers truly want to improve patient care they need to start seeing their patients as individuals and not just bodies in chairs.
MUC2025-011 – Dialysis Facility Discussion of Patient Life Goals
MUC2025-011 – Dialysis Facility Discussion of Patient Life Goals
This measure, proposed to be included as a clinical quality measure in the ESRD Quality Incentive Program, “reports patients’ satisfaction with how well their care team discussed life goals as part of treatment planning using the Patient Life Goals Survey instrument and allows facility-level comparison of patient satisfaction around discussion of life goals by generation of a t-score.”
DCI agrees that understanding a person’s values, priorities, and life goals is critical to person-centered care. These conversations are foundational to treatment planning, psychosocial support, modality decision-making, and long-term expectations. Because dialysis is life support, understanding each patient’s priorities is essential. DCI recognizes the value of the intent of this measure.
Our primary concern is that this survey could become a “check the box” process for dialysis providers. We are working to implement a process that includes the life goals outlined in the survey within the DCI assessment and care planning process in DCI clinics.
MUC2025-011
This measure has not been tested appropriately in a broad enough group to be representative of the breadth of US hospitals, care settings, and patient types. I am not opposed to the measure, but when reading the details, it said it was tested on 25 patients across four patient type. This does not seem adequate for understanding the challenges or cost with collecting and submitting this data, especially since it is being proposed for inclusion in a QIP. Because it is being put forward for QIP, it should also have minimum patient volume and survey thresholds, like those that exist for HCAHPS. I am also unclear about how this measure impacts outcomes of care in the inpatient setting. While it is intended to include patients with at least 90-consecutive days of dialysis, it is unclear what the frequency of the survey is...one time, once per year, etc? If this is like HCAHPS and is anonymous, how will hospitals know who has submitted a survey or when? Is it intended to be anonymous, like HCAHPS, or do the hospitals know who has submitted and how they answered? None of this is clear from the information that has been provided. Thank you.
Dialysis Facility Discussion of Patient Life Goals
The AHA does not recommend this measure for inclusion in the ESRD QIP at this time. According to the Preliminary Analysis, the measure did not meet the criteria for feasibility, validity, reliability, or usability. While CMS “indicated that they plan to address these known implementation challenges during rulemaking finalization,” a measure that does not meet the CBE’s definition of meaningfulness should not be considered for use in CMS programs.
The PaLS survey was under consideration during the 2023-2024 PRMR cycle and no recommendation consensus was met, with 1/3 of Hospital Committee members voting “Do Not Support.” We recognize that the measure under consideration in the current cycle is updated to address some of the concerns with the PaLS survey—primarily that the previous version of the measure only assessed whether patients answered any of the items on the survey, not the scores that the facility received on the survey. Unfortunately, several other disadvantages with the PaLS remain. For example, only the survey tool itself has been analyzed, and there does not appear to be data that use of the measure results in improved patient outcomes. It also appears that the response rate to the PaLS survey in testing was extremely low, raising significant questions about the feasibility and value of the tool. The measure was Not Endorsed by the Primary Care and Chronic Illness committee in the Spring 2023 cycle based on concerns that the evidence provided did not show a clear patient desire for this type of measurement and there was a lack of alignment with patient-preferred outcomes.
While shifting the measure’s focus from process (whether the survey was administered) to performance (proportion of patients who scored highly) may improve the usefulness of information gleaned from the measure in some ways, we fear that this might actually confound interpretation of measure performance further. The developer notes that performance on the measure may be influenced by patient-level characteristics rather than quality of care, and thus facilities that serve higher proportions of complex and/or disadvantaged patients would be unfairly assessed.
MUC2025-011: Dialysis Facility Discussion of Patient Life Goals
FME believes CMS should only incorporate consensus‑based measures into quality programs, and notes this measure is not endorsed by a consensus‑based entity. We believe the additional patient survey burden may reduce data quality and reliability. We also note data fields would need to be built in EQRS, which requires extensive lead time, at least one year after the release of technical specifications needed for batch submission. Finally, we believe the measure would create a high workflow impact and significant IT development burden.
Recommendation: FME recommends that CMS not adopt MUC2025‑011 for dialysis facility quality programs at this time, given the lack of consensus‑based endorsement, the added patient survey burden, and the significant operational and IT challenges associated with implementing the measure in EQRS.
Support of MUC2025-11
The Coalition for Supportive Care of Kidney Patients supports the integration of the Dialysis Facility Discussion of Patient Life Goals (D-PaLS PRO-PM) and ACP into the Medicare End-Stage Renal Disease (ESRD) Quality Incentive Program (QIP).
As an organization dedicated to ensuring that every person with kidney disease receives care that aligns with their personal values, goals, and preferences, we believe the D-PaLS measure is a vital tool for transforming the current dialysis landscape.
The Critical Need for Supportive Care Metrics
For decades, dialysis quality has been measured through a narrow clinical lens—focusing on lab results and technical adequacy. While these are important, they do not reflect the lived experience of the patient. Too often, there is a profound "communication gap" between the medical goals of a facility and the life goals of the individual sitting in the dialysis chair.
The D-PaLS PRO-PM (Patient-Reported Outcome Performance Measure) provides the first scientifically rigorous way to hold facilities accountable for having these essential conversations.
Why the Coalition for Supportive Care of Kidney Patients Endorses D-PaLS:
Christine Corbett
Executive Director
Coalition for Supportive Care of Kidney Patients
MUC2025-011: Dialysis Facility Discussion of Patient Life Goals
The Renal Physicians Association (RPA) is a non-profit 501(c)(6) national nephrology specialty medical association whose mission is to empower the kidney community through education and advocacy in the pursuit of our vision for optimal kidney care for all. RPA is the trusted voice and advocate for nephrology practice, equipping kidney care professionals with unmatched expert guidance in reimbursement policy, clinical operations, and practice sustainability. Through education, leadership development, and policy-driven advocacy, RPA drives innovation and promotes access to the delivery of patient-centered kidney care.
RPA appreciates the value of patient-reported measures. However, RPA has several concerns. First, we are concerned that this measure would add to the survey fatigue already faced by patients with end stage renal disease (ESRD). Patients are already expected to complete the following surveys: Patient Activation Measure (PAM); PHQ-9; KDQOL; iCAHPS (twice a year); dialysis facility specific surveys such as wellness surveys, as well as patient satisfaction every time they are discharged from a facility or have a procedure. Consequently, response rates to surveys are frequently lower than desired, which diminishes their representativeness and generalizability. Therefore, inferences that can be used for patient care are limited. Second, details regarding how the survey data will be implemented into action are lacking. Third, no information has been provided as to how this measure has changed since its last submission. RPA urges CMS and the measure developer to account for these concerns as the process unfolds.
Dialysis Facility Discussion of Patient Life Goals Measure
I've had ESRD for a number of years. I've had both dialysis, transplant, and countless surveys. Sometimes a question about my life goals reminds me of the fact that I was diagnosed with kidney disease at age thirty. When friends were getting married, I was getting my dialysis access. When friends were having a baby, I was having a transplant. Although these questions may be with the best of intensions, reminding someone that they have a chronic illness isn't a pleasant experience. If a survey can improve an outcome, I'm all for it. But if I'd had a challenging day, I could either be short/rude or not tell you the truth about my experience for fear of retribution.
Furthermore, we are all experienced survey burnout; you don't have to have kidney disease to know that. Everyone wants you to fill out a survey. Luckily, I am a college graduate. I did very well in statistics and I curious how a survey about goals will improve the health of my peers or myself. But if I wasn't a college graduate, would that somehow lessen my life goals? It's comparing apples and oranges and different every day or every health event. I do not believe you can assign a number to a life goal. Furthermore, I don't believe you can compare life goals. We are ALL different. With different circumstances and different opportunities. If I'm cranky about filling out yet another survey, will that be used negatively? How do you begin to quantify the worth of a life goal? I don't believe you can and you cannot account for frustration. I would encourage you to please spend your time and resources on a measure that has a feasible expectation.
Dialysis Facility Discussion of Patient Life Goals
I am a patient who has kidney disease, a transplant recipient, and a transplant navigator/mentor, helping patients become listed for kidney transplant and find a living kidney donor. The majority of the patients I serve are on dialysis. Many call me for support and say things like "I don't know if I can keep doing this" or "I don't know if I'm going to make it to transplant." or "They took too much fluid off and I feel awful. I have to sleep the rest of the day." or "My friends and family don't understand how hard dialysis is."
I don't believe the questions asked on the D-PaLS PRO-PM appropriately measure the impact dialysis has on the lives of people with ESRD. Alternate question to consider:
I understand that these questions have not been validated as a patient outcome measure, but I believe these or something similar should be considered and validated. They better reflect what we are really trying to measure as we think about the significant impact of dialysis on life, goals, and the ability for patients to live a normal life while on dialysis. These questions would also measure how dialysis centers are helping patients understand their options and making referrals so their wishes are being heard and honored.
On behalf of Kidney Care…
On behalf of Kidney Care Partners (KCP), I want to thank you for providing the opportunity to submit comments on the measures currently under consideration for use in select Centers for Medicare & Medicaid Services (CMS) programs (MUC List). Our comments focus on the three measures related to the Medicare End Stage Renal Disease (ESRD) program. We support the hyperphosphatemia measure and urge the MUC panel not to recommend the Patient Life Goals and Advance Care Planning measures at this time for the reasons described in this letter.
KCP is an alliance of more than 30 members of the kidney care community, including patient advocates, health care professionals, providers, and manufacturers organized to advance policies that support the provision of high-quality care for individuals with chronic kidney disease (CKD), including those living with End-Stage Renal Disease (ESRD). Our mission is to involve patient advocates, care professionals, providers and manufacturers to ensure:
KCP appreciates the underlying premise of the Dialysis Facility Discussion of Patient Life Goals (Patient Life Goals) measure, yet, given the strong concerns voiced by patient organizations and the challenges with making this measure meaningful for patients, we urge the MUC panel not to support it for the ESRD QIP. KCP is particularly concerned that many patients and patient advocates do not support the measure because it increases patients’ already heavy burden of completing surveys for Medicare. They also do not view it as not a meaningful measure from their perspective. Given that the intent is to support patient-centered care, we urge the MUC panel to listen to these patients and reject the measure from moving forward.
As KCP urge CMS to consider first in 2017 in its report entitled “Patient-Reported Outcomes for End-Stage Renal Disease: A Framework for Priorities and Measurement,” patient reported outcomes measures that are meaningful and can improve patient outcomes and experiences have an important role to play in the ESRD QIP. Yet, the Patient Life Goals measure will not achieve these objectives. Patient advocacy organizations within KCP oppose the metric.
First, they are concerned that adding another survey burden individuals requiring dialysis will result validity problems. Medicare already requires the ICH-CAPHS survey to be administered to individuals receiving dialysis treatments twice a year. These individuals are also likely to be subject to surveys mandated in other providers’ quality programs. CMS has reported low response rates with the ICH CAHPS for at least a decade. These low rates are primarily due to survey fatigue. We are pleased that CMS has recognized this problem and finalized changes to the ICH CAHPS in the most recent rulemaking. Adding the Patient Life Goals measure as current specified eliminates the relief patients were just provided. Moreover, if patients do not participate, this measure will lack the validity necessary to be a useful metric.
Second, the measure is not actionable and, thus, will not support meaningful improvements for individuals receiving dialysis. The broad nature of the measure’s definition of life goals mean that the responses cannot be directly linked to the medical treatment being provided. With no clear link between a life goal and a specific aspect of a patient’s care, the measure will not support the intent of the Administration in considering such a metric. In addition, the survey does nothing to assess the non-clinical challenges, such as nutrition, housing, access to care-givers, that may impact a patient’s life goals. Individuals receiving dialysis continue to raise concerns with the ICH CAHPS measure because the survey does not result in direct actions to address their responses. The Patient Life Goals measures seems to repeat this problem.
From a practical point of view, the Patient Life Goals measure creates significant implementation challenges and burdens. To be fully incorporated into the ESRD QIP the measure would need to be built into EQRS which will require extensive lead time following release of technical specs needed for batch submission. In light of the fact that a significant number of patients and patient advocacy organizations oppose this measure, the high workflow impact and IT development burden of the measure seems inappropriate to mandate.
Again, KCP appreciates the opportunity to provide comments on the MUC list. We look forward to working with CMS on this and future quality initiatives to improve outcomes and quality of life for individuals who rely upon the Medicare program for life-sustaining dialysis treatments. Please do not hesitate to reach out to our counsel, Kathy Lester, if you have questions or would like additional information about KCP’s recommendations.
In light of these concerns, it is understandable why the consensus-based entity has not endorsed this measure.
KCP continues to support an appropriate patient reported outcomes metric for the ESRD QIP, but more the Patient Life Goals measures is not the right one. Thus, we ask the MUC panel not to support this measure moving forward.
Dialysis Facility Discussion of Patient Life Goals
My name is Alma Webster. I have been a caregiver to my daughter with ESRD since 1996. I've accompanied her to countless appointments and have some comments I would like to make as a caregiver. When my daughter was first diagnosed, we were introduced to medical surveys. As positive and resilient as she is/was, I could see medical surveys regarding her quality of life and perception of health started as difficult and have now become a nuisance and at times comical. Someone who doesn't know my daughter, like myself or her medical providers, do not have the luxury of knowing her day to day struggles. She may be having a bad day, a bad test result, a new diagnosis, a frustration that is normal for someone of her age and reply impulsively - my fear is a person who has never met her would read her response and misinterpret her QOL or life goals. Furthermore, even people who don't have a chronic illness can have bad days, for some, their bad days is every time they have to go in for a treatment! Furthermore, you cannot assign a metric to someone's life goals because they are subjective and fluid changing day to day, hour to hour, and minute to minute. With all the surveys she has completed, we do not see how exploring her "life goals" could benefit her or other patients. Is her attending college or not attending college a factor? Can her social life be measured and more importantly how would that be judged by a medical provider or statistician that has never met her. I know this topic came up a few years ago. It is still not a good idea and basically a waste of time, money, and patience. Everyone is surveyed out. If it can't be measured, don't pour resources and inconvenience into it.
Dialysis Facility Discussion of Patient Life Goals
Support with modification: We recommend clear attribution and flexibility in digital documentation.
Support this measure
C-TAC supports this measure as it is very importat that people at dialysis are fully informed of their options regarding treatment for ESRD so as to provide informed consent to that treatment. Dialysis can be very burdensome on patients and families and so patients need to fully know what it entails. If they have already started dialysis, these conversations about thier life goals will help ensure that they are fully informed to either continue dialysis or pursue alternatives. including palliative care or hospice.
MUC2025 Life Goals
https://google.com/search=who+lives+ckd+video&rlz
As the care partner for my husband Dave, who has been on in-center hemodialysis with a central venous catheter access site, for the past 3 years, I really do not see the value in asking for his life goals to assist in developing care plans or improving his dialysis care. I know Dave's choice of access modalities was determined largely by urgency issues. He just wanted to live; he was happy to get a chair at the center, and his goal was, and is, to get through each session and return home feeling better, which he does. I believe most people who need dialysis make the decision which modality to go with based on discussions with loved ones and their doctors. Why would dialysis center personnel need or want to discuss life goals when they are just trying to give the best care possible to the patients that rely on them at the center? They truly have no time to do this-they need to fucus on each and every patient in their care. who truly are there just for their treatment and do not want to be asked to fill out surveys. Believe me, if Dave is upset or dissatisfied by something at the center, be it with a nurse,technician,the actual treatment, or other personnel, it is addressed, either by both Dave and I or by Dave alone. Judging CKD patients' satisfaction by any external measure, as seen to an extreme in the above video "Who Shall Live", is condescending and demeaning to these brave, resilient CKD warriors. They don't need a survey thrust at them to measure their satisfaction. Would you give a cancer patient a survey after undergoing chemo or radiation to see if they felt like measuring their life's goals? Or if they felt like less of a person because they had undergone above treatment? Just give CKD patients better treatment options, such as less risky and more available transplant choices, and their life goals will be a lot more accessible plus their satisfaction will increase immeasurably. That is where the real work begins, not in giving them another survey. Thank you.
Dialysis Facility Discussion of D-PaLS Measure
I appreciate the opportunity to comment on the proposed Dialysis Facility Discussion of Patient Life Goals (D-PaLS) patient-reported outcome measure under consideration for the ESRD Quality Incentive Program.
For context, I have lived with chronic kidney disease for over 25 years. I have experience with both in-center hemodialysis and home hemodialysis, with a combined total of more than one year on dialysis, and I am currently an 11-year kidney transplant recipient. My perspective is informed by long-term lived experience across multiple modalities of kidney replacement therapy.
I strongly support efforts to improve patient-centered care and shared decision-making. Meaningful engagement with patients about what matters to them is important. However, I have serious concerns that the proposed D-PaLS measure, as currently designed, risks missing the realities of life on dialysis and may unintentionally cause harm.
For many patients receiving chronic dialysis, daily life is dominated not by aspirational “life goals,” but by physical symptoms, emotional distress, and basic survival needs. Fatigue, cramping, blood pressure instability, depression, financial strain, transportation challenges, and housing insecurity are common. When patients are struggling simply to tolerate treatment or maintain stability, asking them to articulate broader life goals can feel premature, discouraging, or even alienating.
Importantly, the absence of clearly defined life goals should never be interpreted—explicitly or implicitly—as a lack of motivation, engagement, or value. Patients who are ill, depressed, or overwhelmed may not be able to identify goals beyond getting through the day. Any quality measure that risks placing patients into such a framework raises ethical concerns.
I am also concerned about the actionability of this measure. It is unclear how dialysis facilities are expected to respond to the information collected. Many facilities lack the resources to address the social, financial, and mental health barriers that patients face. Asking patients about life goals without clear pathways for support may raise expectations that cannot be met, potentially damaging trust between patients and their care teams.
In my experience, patient-centered care begins with ensuring that dialysis treatment itself is tolerable and individualized. When symptoms are better controlled and patients feel physically and emotionally supported, they are far more able to engage in meaningful discussions about their lives, preferences, and future plans. Measures that focus on treatment tolerance, symptom burden, and the patient’s day-to-day experience may offer more immediate and actionable insights into care quality.
I respectfully urge CMS to reconsider the sequencing and framing of this measure. If patient life goals are to be assessed, they should be approached with great care, inclusive language, and strong safeguards to ensure patients are not judged or disadvantaged based on their responses. Consideration should also be given to pairing or prioritizing measures that assess symptom burden and treatment experience, which directly influence a patient’s ability to pursue any goals at all.
Thank you for considering the patient perspective as you evaluate this proposed measure.
MUC2025-011, End-Stage Renal Disease Quality Incentive Program (
I am a family member of someone living with kidney disease who depends on dialysis.
While I support patient-reported measures that actually improve care, I do not believe that the proposed “Life Goals” measure will accomplish that goal.
My father often comes home from dialysis exhausted, sick, and full of anxiety. The last thing on his mind is life goals. What he wants and needs is for his treatment to be done right so he doesn’t feel so awful afterward. It’s hard to understand how a dialysis facility can help him achieve life goals when they struggle to get his dialysis prescription right from one treatment to the next.
Some of the survey options, especially “feeling like a regular person rather than someone on dialysis,” feel condescending and counterproductive. It sends the message that people on dialysis are somehow less valuable than those who are not, which is more likely to leave them feeling discouraged rather than empowered to think about life goals.
I honestly do not see how this measure would improve care. A far better approach would be asking patients how they actually feel after treatment, whether they are exhausted, cramping, nauseated, or unwell. That is something meaningful, measurable, and actionable.
I urge CMS to remove this Life Goals measure and instead focus on patient-reported questions that help ensure dialysis treatments are tolerable, effective, and truly patient-centered.
MUC2025-011
RSN comments are attached adn we oppose this measure.
comments on measure
While the measure is designed with intentions to support high quality goal-directed care for beneficiaries with end stage renal disease, there are a few concerns.
References:
https://www.sciencedirect.com/science/article/pii/S2590059525000081?via…
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2843237
Dialysis Facility Discussion of Patient Life Goals Measure
The American Occupational Therapy Association (AOTA) supports the inclusion of the Dialysis Facility Discussion of Patient Life Goals. Capturing life goals for individuals receiving dialysis is essential to improving care outcomes and enhancing overall quality of life. The patient-reported outcome performance measure elevates the patient’s voice and provides a valuable mechanism for informing dialysis providers about what matters most to their patients.
Occupational therapy is grounded in meaningful engagement and its impact on daily life and well-being. Individuals receiving dialysis often experience excessive fatigue and frequently have other chronic conditions that can impede participation in what matters most to them. Occupational therapy interventions such as energy conservation strategies, activity modifications, adaptive equipment, and lifestyle adjustments can help patients maintain optimal participation in meaningful life activities. These interventions align directly with national goals to improve health and well-being for all Americans.
We encourage CMS to monitor how this information is utilized – for example, whether patients are appropriately referred to additional services when needed.