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National Quality Forum: Palliative and End-of-Life Care 2015-2016 Draft Report Comments

National Quality Forum (NQF)                                                                     July 19, 2016

Palliative and End-of-Life Care Standing Committee


Dear Standing Committee,

On behalf of the Coalition to Transform Advanced Care (C-TAC), we appreciate the opportunity to provide comments on the Palliative and End-of-Life Care 2015-2016 Draft Report for Comment, particularly with respect to how these measures affect the care of those with advanced illness. Dr. David Longnecker, C-TAC’s Chief Clinical Innovations Officer, will upload the comments regarding the specific measures below to your website, but we are also providing them in this letter to represent the viewpoint of C-TAC leadership and our coalition members.

C-TAC is a national non-partisan, not-for-profit organization dedicated to ensuring that all those with advanced illness, especially the sickest and most vulnerable, receive comprehensive, high- quality, person- and family-centered care that is consistent with their goals and values and honors their dignity. C-TAC is made up of over 130 national and regional organizations including patient and consumer advocacy groups, providers, health plans, faith-based and community organizations, and others who share a common vision of improving advanced illness care in the U.S.

C-TAC’s definition of advanced illness is when one or more conditions becomes serious enough that general health and functioning begin to decline, treatment may no longer lead to preferred outcomes, and care oriented toward comfort may take precedence over attempts to cure – a process that extends to the end of life and that for some patients and their families may lead to transition to hospice. It is with this population in mind that we comment on the following aspects of the Palliative and End-of-Life Care 2015-2016 Draft Report for Comment measures.

Overall Comment

C-TAC very much supports the focus on quality in care for those with advanced illness and in the use of validated measures to both insure such care and to provide payment incentives for value, versus volume. However, we recognize that the measures in the draft report are not enough to appropriately cover the range of care for those with advanced illness, including palliative and end-of-life care, advance care planning, and hospice. There is also a lack of measures determining whether care provided is aligned with an individual’s goals, values, and wishes– the foundation of person-centered care. We recognize that the current National Quality Forum (NQF) process, which typically takes 7-9 years to yield validated measures for the Centers for Medicare and Medicaid Services (CMS) use, is unfortunately too slow, for instance, to provide measures needed for the 2019 Medicare and Chip Reauthorization Act (MACRA) implementation. For that reason, in our comments to CMS about the MACRA rule, we urged CMS and The Assistant Secretary for Planning and Evaluation (ASPE) to invest in accelerating the development of more appropriate quality measures for this population as soon as possible. We recognize this will require funding for both measure development and maintenance, as the palliative care, hospice, and geriatrics fields lack the resources to fund this themselves. Those measures should be patient-reported and relevant to people living with advanced illness.

Specific Measure Comments

0209 Comfortable Dying: Pain brought to a comfortable level within 48 hours of initial assessment: A “comfortable death” is one of the key goals of the health professions and a measure for this goal would be appropriate. We encourage the developers to address the issues in this measure and resubmit.

1634 Pain Screening: We strongly support the importance of this screening as pain is a common symptom of advanced illness and many patients cite fear of inadequate pain control as a key concern.

1637 Pain Assessment: We strongly support this measure as a thorough assessment is a key component of managing pain, a troubling symptom for many with advanced illness.

1628 Advanced Cancer Pain Screening at outpatient visits: We support this but strongly agree with the minority view that the denominator is too narrow in focusing just on those with advanced cancer who survive at least 30 days post diagnosis; there are both those with less advanced cancer and those who die within a month of diagnosis who experience severe pain and they, too, would benefit from this outpatient screening. More broadly, this is one of the palliative care measures that is specific to just one serious illness or setting and we encourage measure developers to work on similar measures that can be used for those with any advanced illness in any setting as well.

1639 Dyspnea Screening: We understand the conundrum that led to lack of consensus but strongly encourage the developers to provide both performance data and update reliability testing for the clinician-level measure in the palliative care setting. Dyspnea is a common symptom in advanced illness and can significantly reduce the quality of life for patients and their loved ones.

1638 Dyspnea Treatment: We strongly support this measure as a thorough assessment is a key component of managing dyspnea, another common and troubling symptom for those with advanced illness.

1617 Bowel Regimen for those receiving opioids: We support this measure, which addresses a frequent side-effect of opioid medications, and note recent literature regarding co-prescribing of a bowel regimen whenever an opioid is ordered to address this problem.

1647 Spiritual Beliefs and Values: We enthusiastically support this measure and underscore its importance; recognizing and addressing the spiritual aspects of advanced illness is a basic tenet of C-TAC’s principles and is strongly supported by individuals engaged with the NQF Advanced Illness Care Action Team. Indeed, this should be a foundational principle for healthcare in all settings and patient populations.

1626 Patients admitted to the intensive care unit (ICU) who have care preferences documented: We concur with the committee’s decision not to endorse this based on their conclusion of lack of specificity and validity, but note eliciting and honoring the individual’s wishes, preferences, and goals should be fundamental tenets of healthcare. This is particularly the case in the ICU, where most patients are no longer able to speak for themselves yet precisely where their wishes and preferences should be known and honored.

1641 Treatment Preferences: We strongly support the expansion of this measure from hospice care only to now include palliative care as well. Eliciting and honoring treatment preferences are foundational concepts for healthcare in any setting where communication is feasible.

0210: Chemotherapy in last 14 days of Life: We support this measure which addresses what is often futile and inappropriate care that can result in toxicity, pain, and suffering.

 0211: Cancer deaths preceded by emergency department (ED) visits in prior 30 days: We understand the concerns about validity, potential unintended consequences, and risk-adjustment that led to this measure being withdrawn. However, we encourage the developers to address these issues and resubmit an improved future measure. ED visits in the last month of life can, along with other utilization measures, identify care that is futile or inappropriate and which can result in the patient dying in the hospital, not necessarily their preferred site of death.

0213 Proportion of Cancer Decedents Admitted to ICU in last 30d of life: We support this measure for the reasons cited by the committee especially because an ICU stay can worsen the death experience for the patient and cause emotional distress for family and loved ones. However, we strongly encourage the development of a similar measure for those with other advanced illnesses since an ICU admission is no more appropriate or comfortable for them than for those with cancer.

0215 Proportion of Cancer Decedents Not Admitted to Hospice: We strongly support this as recommended as hospice is proven to improve the quality of life for patients and families. However, we also note that this concern applies to non-cancer patients as well, who are not addressed in this measure. Therefore, we encourage the development of a similar measure for those people living with other or any advanced illness.

0216 Proportion of Cancer Decedents admitted to hospice for fewer than 3 days: We strongly support this measure. The data is clear that the full benefits of hospice are not possible when the length of stay is only a few days. As stated in measure 0215, we also encourage the development of a similar measure for those people living with non-cancer advanced illnesses.

1625 Hospitalized Patient Expected Deaths with deactivated implantable cardioverter defibrillators (ICD): We support this measure’s intent and approach which can decrease the potential discomfort and anxiety in terminally ill patients with these devices. It is unfortunate that many are discharged to home or hospice with these devices still activated and that those patients and families are not given the option of convenient deactivation while still in the hospital.

2651 CAHPS Hospice Survey Measures: We strongly support this group of measures, which assess the key aspects of patient and family experience of hospice care. The overarching goal of hospice care is to reduce the personal and family burden associated with death and dying and failure to measure these aspects could not be justified. We would also encourage the development of similar measures for use in other clinical settings.


Thank you for the opportunity to comment on these proposed measures. We are excited about how they could help improve and incentivize better care for people with advanced illness via access to advanced illness care, palliative care, and appropriate and timely referral to hospice. If you have any questions, please contact David Longnecker, Chief Chief Clinical Innovations Officer at (202) 534-9954 or DEL@thectac.org, or Marian Grant, Director of Policy and Professional Engagement at 443-742-8872 or mgrant@thectac.org.


David Longnecker and Marian Grant

1299 Pennsylvania Ave, Suite 1175

Washington, DC 20004

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