How To Know If A Patient Is Happy With Palliative Care



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Quality Metrics in Palliative Care R. Sean Morrison, MD Director, National Palliative Care Research Center Director, Hertzberg Palliative Care Institute Hermann Merkin Professor of Palliative Care Professor, Geriatrics and Medicine Brookdale Department of Geriatrics & Palliative Medicine Mount Sinai School of Medicine New York, NY sean.morrison@mssm.edu

What is quality? Quality initiatives and palliative care What should my program be doing? How should I be doing it? Summary and discussion

Our current health care industry Medical errors Risks that often outweigh benefits Preventable suffering Wasted resources Inequitable access to care Variability in care

What is Quality? I know it when I see it Degree to which health services increase the likelihood of desired health outcomes and are consistent with current professional knowledge

Quality Healthcare Patient centered Timely Beneficial Safe Equitable Efficient Institute of Medicine

Palliative Care and Quality Dr. M, an 89 year old practicing psychoanalyst Admitted to the hospital for scleroderma and progressive kidney failure. Declined hemodialysis. Palliative care consult called to assess patient s capacity to refuse dialysis and to assure that she was not suicidal. Discharged home with hospice after 5 days. Did well at home for 4 months, remained in active clinical practice. Said good bye to her patients, her son, and her friends, then died quietly at home 3 days later.

How did palliative care deliver quality? She received good hospital palliative care Goals of care assessment, development of a care plan consistent with goals, symptom management, discharge planning Transitioned effectively to, and received good care from, hospice at home Meticulous symptom management, psychosocial support from hospice RN, SW, MD to patient and her distressed family and friends. Assured a peaceful dignified death at home How would you measure and report this?

The Purpose of Measurement External quality assessment Internal quality assessment

External Quality Measures Undertaken at the behest of purchasers, government, regulatory bodies Required, designed for broad audiences, undertaken across multiple organizations simple, consistent, inexpensive High standard of reliability/validity desirable with respect to the relationship between processes and outcomes consequences for provider choice, certification, reimbursement

Internal Quality Measures Undertaken by institutions providing care Voluntary, limited audiences, usually undertaken within a single organization As detailed, intense, and comprehensive as desired by their initiates

Measuring Quality Structure characteristics of the physician or health care institution (e.g., credentialing of palliative medicine professionals, presence of a palliative care program) Process encounters between the patient and health care institution/provider (e.g., appropriate referral for palliative care, concurrent laxative treatment with opioid therapy) Outcome the persons subsequent health status (e.g., reduction in symptom distress, improved quality of life)

The link between structure, process, and outcome Structure and process indices are most useful as quality indicators if changes in the attributes that they measure have been shown to improve patient outcomes. Outcome indices are most useful as quality indicators if they can be linked to specific process or structural measures that if altered, change the outcome

Which really means Providers should not measure nor be held accountable for: Outcomes that have not been shown to be alterable by processes or structures under their control Processes or structures that have not been shown to improve outcomes

The Dilemma Facing Palliative Care Current research does not yet provide a sufficient evidence base to support links between structureprocess-outcomes for key palliative care domains: Quality of life, family burden, spiritual well being, bereavement, continuity, pain and other symptoms Quality measures are becoming the foundation for healthcare reform Required by payors, regulatory bodies, certifying agencies Pay for performance, Public reporting, CQI Palliative care cannot afford to ignore quality

Unintended Consequences Burden and expense of measuring outcomes that we may not be able to tell someone how to alter Results of a poor measure may look as authentic as the results of a good measure Risk of diverting resources to problems being assessed to the detriment of equally and more important problems not being assessed (e.g., advance directives)

For every problem there is a solution which is simple, clean, Developing a Quality Measure Malnutrition and weight loss result in increased morbidity and mortality in the elderly Nursing home residents are at high risk for malnutrition and dehydration Weight loss selected as an external quality indicator for minimum data set (MDS)

and wrong H. L. Mencken The Unintended Consequence Seriously ill and dying patients lose weight Broad application of quality indicator has resulted in: Increased use of feeding tubes Increase in transfers to acute care facilities Poorly selected measure resulted in inappropriate care

What Should I Do? Develop a plan for internal quality measurement Participate in national discussions regarding external quality measures Be aware of unintended consequences Be prepared and flexible for implementation of sub-optimal external quality measures

External Quality for Palliative Care National Consensus Project National Quality Forum

National Consensus Project Coalition of CAPC, NHPCO, AAHBM, HPNA, Last Acts Purpose To define an effective national consensus process for establishment of clinical practice guidelines for quality palliative care in the United States. To develop such guidelines through an evidence-based review process involving major palliative care organizations in the U.S. and a large number of professionals in diverse disciplines. Identifies core precepts and structures of palliative care in 8 domains www.nationalconsensusproject.org

National Quality Forum Framework for Palliative Care Public-private partnership organization charged with advancing the quality of health care in the United States Established 38 preferred practices associated with quality palliative care http://www.qualityforum.org/pdf/reports/palli ative/txphreportpublic01-29-07.pdf

National Quality Forum Palliative Care Measures All new payment systems must include NQF endorsed quality measures Bundle of key quality measures submitted to NQF Coordinated by National Palliative Care Research Center All but 2 endorsed Available at: http://www.qualityforum.org/publications/2012/04/palliativ e_care_and_end-of- Life_Care%E2%80%94A_Consensus_Report.aspx

NQF Endorsed Measures Pain screening and assessment (UNC) Patients treated with an Opioid who are given a bowel regimen (RAND) Dyspnea screening and treatment (UNC) Patients admitted to the ICU who have care preferences documented (RAND) Documentation of treatment preferences (UNC) Percentage of hospice patients with documentation in the clinical record of a discussion of spiritual/religious concerns or documentation that the patient/caregiver did not want to discuss (Deyta) 23

NQF Endorsed Measures Comfortable dying (NHPCO) Hospitalized patients who die an expected death with an ICD that has been deactivated (RAND) Family Evaluation of Hospice Care (NHPCO) CARE- Consumer Assessments and Reports of End of Life (Center for Gerontology and Health Care Research) Bereaved Family Survey (PROMISE Center) 24

What makes a good measure? Uniform Core set for all hospitals Balance utility with data collection ease Based on best available evidence Primarily structure and process measures Select outcome measures Allows comparisons across institutions to guide programmatic growth, ensure compliance with best practices, and explore quality Not measures of quality because not (yet) linked to outcomes!

What are my metrics? Operational Does my program have the features required to provide high quality palliative care? What metrics do I need to measure in order to demonstrate my program has these cores features? Clinical Am I improving the clinical care of patients? Symptom assessment scores, psychosocial assessment scores Customer Am I meeting the needs of patients and families? Satisfaction survey data: patient, family, referring clinician Financial Is my program fiscally responsible?

CAPC Metrics Specific operational details necessary for sustainable high-quality hospital palliative care programs Developed by consensus panels of PCLC experts, CAPC staff, and CAPC consultants led by David Weissman, MD Interdisciplinary representation from academic and community hospitals, single hospitals and large health care systems, and from programs coordinated by hospice agencies and hospitals Operationalizes NQF Framework 38 preferred palliative care practices Detailed descriptions available in Journal of Palliative Medicine Weissman & Meier, J Palliat Med, 2008

CAPC Operational Features 12 domains containing Must Have and Should Have recommendations Program administration, Service types, Availability, Staffing, Measurement, QI, Marketing, Education, Bereavement Services, Patient identification, Continuity of care, Staff Wellness Starting point for strategic planning for existing programs and template for programmatic development for hospitals in planning phase. Weissman & Meier, J Palliat Med, 2008

What Is The Status Of My Program? Worksheet 1A: Existing Programs Worksheet 1B: Start-up Programs Inventory your current or planned program Identify data sources/potential barriers to missing elements

CAPC Service Metrics: Consultation Programs & Inpatient Units Operational metrics required to assist programs in ensuring quality, sustainability, and growth Operational metrics required to allow programs to compare their service utilization to similar programs throughout the country Weissman,Meier, & Spragens J Palliat Med, 2008. Weissman & Meier, J Palliat Med, 20090

CAPC Consultation Service Metrics Suggested prospective data elements Patient ID number Patient age, gender, race/ethnicity Consultation diagnosis Referring service and/orreferring MD Date of hospital admission Date of hospital discharge Date of consultation Disposition: inpatient death vs. discharge Hospice discharges Weissman,Meier, & Spragens J Palliat Med, 2008

What Is The Status Of My Program? Worksheet 2 Inventory your current or planned consult service Identify data sources/potential barriers to missing elements

Clinical and Customer Satisfaction Metrics Suggested domains of measurement Clinical Metrics Assessment and management of physical/psychological/spiritual symptoms Establishment of patient-centered goals of care Support to patient and family caregivers Management of transitions across care sites Customer satisfaction metrics Patient/family satisfaction Referring physician satisfaction Weissman et al, J Palliat Med, 2009

Clinical Metrics NQF pain and dyspnea measures NQF opioid prescribing measure NQF care planning measure(s) palliative care and ICU Care transitions measure

Customer Satisfaction The dilemma of measuring satisfaction Were you satisfied with your pain control? Did the doctors and nurses do everything they could to relieve your pain? Would you recommend this hospital to your friends? Were you satisfied by the services provided by the palliative care team?

Satisfaction Surveys- (Patients) and Families Advantages: Available and accessible Direct measure of experience Retrospective interviews are possible Reasonable measure of quality issues Family experience Disadvantages Proxy experience may not be the patient experience Validity of data dependent on proxy s communication and connection with patient Time consuming, potentially low response rates

Satisfaction Surveys-(Patients) and Families Available Measures Press-Gainey post-discharge surveys

Satisfaction Surveys-(Patients) and Families Press-Gainey Patient Satisfaction Survey Advantages Widely used Contains some core palliative care measures (e.g, pain, transition management) Allows comparisons across different services/institutions using standardized instrument Disadvantages Undersamples or fails to sample palliative care patient families Palliative care experience can be lost in the chaos of the hospitalization Many core palliative care measures are not included Requires significant effort on palliative care team to ensure patient relatives are appropriately sampled Little assessment of patient expectations

Tools to Measure Customer Satisfaction Validated scales FAMCARE scale Consumer Assessments and Reports of End of Life (CARE): *NQF endorsed

Action Steps Identify your current measures for tracking patient and family experiences Review measures presented today Develop a plan to document patient/family experiences with palliative care Will you need additional resources? What are they? How will you get them?

Key issues Referring Physicians Assistance with their most complicated patients Time Credit

Satisfaction Surveys - Referring Physicians PC ID Pulm Card Onc 5 4.5 4 3.5 3 2.5 Ease of contact Timeliness Expertise Info Value Overall Source: MCW Froedert Hospital Medical Staff Survey, Milwaukee, WI, 2007

Satisfaction Surveys - Referring Physicians Ideal if undertaken by appropriate authority: Chair of medicine Hospital CEO Less than ideal if undertaken by an individual program Doctors hate surveys + Doctors don t complete surveys +Doctors don t return surveys = No survey data

Satisfaction Surveys - Referring Physicians Targeted one on one interviews (MD to MD) Established referrers What is your advice about broadening our service to your colleagues? What do you find most valuable about our program? New referrers Why did you consult palliative care? What was your experience with our team? How could we have been more helpful? Any constructive feedback? Never referrers Can I tell you a little bit about what we do? Have you considered using our program Why? Why not? Are there things that we can do to help you?

Supplementary Sources Referral sources Individuals, services Rates Reconsults Non-reconsults

Action steps What are you currently doing to assess referring physician satisfaction? What data do you currently have? Based upon the prior discussion what new steps will you undertake and what data will you collect? Develop a plan to assess referring physician satisfaction with your service

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References Weissman DE, Meier DE: Operational features for hospital palliative care programs: consensus recommendations. J Palliat Med 11:1189-1194, 2008 Weissman DE, Meier DE: Center to advance palliative care inpatient unit operational metrics: consensus recommendations. J Palliat Med 12:21-25, 2009 Weissman DE, Meier DE, Spragens LH: Center to Advance Palliative Care palliative care consultation service metrics: consensus recommendations. J Palliat Med 11:1294-1298, 2008 Weissman ED et al. Center to Advance Palliative Care Palliative Care Clinical Care and Customer Satisfaction Metrics: consensus recommendations. J Palliat Med,13:179-84, 2010 http://www.qualityforum.org/publications/2012/04/palliative_care_a nd_end-of-life_care%e2%80%94a_consensus_report.aspx