Quality Assessment and Improvement in End-of-Life Care

1. M. Kay M. Judge, EdD, RN Marjorie J. Wells, PhD, ARNP

2. Introduction • Nursing’s implied contract with society: • To value, monitor and attend life transitions, including: birth, developmental progression through childhood, puberty, adulthood old age, and end-of-life transition. • Dealing with the last transition maypresent the greatest challenges as well as the greatest opportunities to health care professionals.

3. Public Policy: Who is Accountable for Quality in End-of-Life Care? • Federal law prohibits denial of care to the critically ill for lack of insurance or other financial resources. • Restrictions in some health plans may place barriers in the way of patients with advanced illness who need to access EOL services. • No law that mandates accessibility to good EOL care even for those who have insurance coverage.

4. Quality Assessment & Improvement • Groups examining ways to make EOL care providers accountable for the quality of care they provide: • Public and private policymakers, purchasers of EOL care, health care organizations, researchers and other. • Various settings where EOL care is monitored: • Hospitals, managed care plans, hospices, home care agencies, long term care facilities and other settings.

5. Definition: Quality of Care Quality of care is: • “The degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge” (IOM, 1990)

6. Assessment • Implicit (e.g., rated by clinicians without reference to defined standards) • Explicit (e.g., based on written criteria) • Judge performance (e.g., rate it acceptable or unacceptable, or better or worse than for a comparable organization) • Improve performance (e.g., identify reasons for poor outcomes) • Internal (e.g., clinical audits undertaken by those providing care) • External (e.g., undertaken by purchasers, government officials, or others not involved in providing care) • Continuous quality improvement (CQI) and Total Quality Management (TQM) models (reinforcing principles to implement change)

7. Problems in EOL Care Quality • Four overarching types of health care quality problems have been described. Care at the end of life is characterized by problems in each of these areas. They include: • ‘Omission errors or under-use of care(e.g., failure to assess and treat pain and other symptoms; delayed hospice care referral, premature hospital discharge) • ‘Commission errors or overuse of care(e.g., diagnostic tests, treatments or hospitalizations that are not wanted and will not inform patient care but may cause physical and emotional distress) • Poor technical performance(e.g., errors in technique such as wound or respiratory care) • Poor interpersonal performance(e.g., inappropriate communication of distressing news)

8. Aspects of End-of-Life Care Quality • Three quality of care aspects have been identified: 1) Structural 2) Processes (the major focus of public and private efforts) 3) Outcomes

9. Processes Establishing a diagnosis and prognosis Establishing goals & plans Providing palliative and other patient care Caring for families, bereavement care Coordinating care including transfers among settings Monitoring, improving care Outcomes Physical (symptoms, function) Psychological (emotional, cognitive) Spiritual Perceptions of care, burden of care Dignity, control over decision-making Survival Structures Care settings (home, institution) Personnel (staff, volunteers, numbers, training) Clinical policies (protocols, guidelines) Information and decision support systems Financial policies (free care, target profit levels) -- Context Culture, norms, social institutions Demographic Geography Economic system, resources Political system, policies, regulations Individual and family characteristics (IOM, 1997) Dimensions of Quality in Care of Dying Patients & Related Quality Strategies

10. Understanding Outcomes • Often measured by physiological measure such as blood pressure or cholesterol levels or by mortality rates. • Long term care facilities like nursing home: Nursing needs other outcome measures. • It is especially important to be very cautious when outcomes are linked to reimbursement for care as this practice can inappropriately reward those who achieve good scores because they avoid less healthy people. • Agency for Healthcare Research and Quality (AHRQ) Outcomes Research Fact Sheet: • Contains further information about outcomes research.

11. What is Outcomes Research? • Outcomes research seeks to understand the end results of particular health care practices and interventions. • End results include effects that people experience and care about. • For individuals with chronic conditions—where cure is not always possible—end results include quality of life as well as mortality. • Supporting improvements in health outcomes is a strategic goal of the Agency for Healthcare Research and Quality (AHRQ)

12. Measuring Outcomes • Historically, clinicians have relied primarily on traditional biomedical measures to determine whether intervention is necessary: • Results of laboratory tests • Researchers have discovered, however, that when they use only these measures, they miss many of the outcomes that matter most to patients. • Outcomes research also measures how people function and their experiences with care.

13. Categories of Patient/Family Outcome Measures for End-of-Life Care I • Overall Quality of Life • Overall experience of living as perceived by patient • Physical Well-being • Specific symptoms (description or rating; "bothersomeness") • Overall comfort or distress (not just frequency or intensity) • Functioning (given stage of illness) • Patient Perceptions of Care • Overall satisfaction with care • Technical & physical aspects (e.g., prevention/relief of symptoms, surroundings) • Interpersonal aspects (e.g., caregiver sensitivity, continuity, information provided) • Consistency with patient preferences (e.g., site of care, therapies)

14. Categories of Patient/Family Outcome Measures for End-of-Life Care II • Spiritual Well-being • Continued meaning in life • Composure despite physical distress • Readiness for death & Religious or philosophical peace • Psychosocial Well-being • Cognitive status • Emotional status • Family Well-being & Perceptions of Care(before & after patient's death) • Emotional & Economic status of family members • Adequacy of information & decision-making process • Perceptions of care provided patient • Perceptions of care provided family including bereavement support • Social interactions • Self-image • Sense of control & dignity

15. Measurement Instruments & Issues “If you don’t measure it, you can’t improve it”

16. Instruments • A myriad of instruments exist to measure health status or quality of life. • Most have not been tested and/or validated in end-of-life care and very few are designed for use with family members.

17. Measurement Issues & Problems • In 1994, the Institute of Medicine Committee on Care at the End of Life recommended developing a “toolkit” of instruments to measure end-of-life care. • They suggested an extensive, collaborative process of testing, adapting, and developing instruments that were • (1) relevant to the experiences of dying patients and those close to them, • (2) sensitive to the effects of changes in care, and • (3) efficient and practical to use. • The main focus of the committee was more on clinical and research uses of measures than on external performance monitoring and rating.

18. Desirable Attributes of Outcomes Assessment Instruments • Developed from the Instruments Based on Criteria from Medical Outcomes Trust: • Conceptual and measurement model • Reliability • Validity • Responsiveness • Interpretability • Respondent and administrative burden • Alternative forms • Cultural and language adaptations

19. Timing & Frequency of Assessments • The role of the caregiver or surrogate as a source of patient data is controversial. • Can a surrogate provide reliable and valid information for patient's experience? • The timing of death is often unpredictable leading to difficulties in obtaining measurements on a specified schedule. • A myriad of instruments exists to measure health status or quality of life either comprehensively or narrowly. • Most have not been tested and validated in end-of-life care and very few are designed for use with family members.

20. Measurement Issues & Problems • Among the issues identified for a variety of symptoms and circumstances are the following. • Assessment timing       • Frequency of assessment • Source of patient information • Ratings of satisfaction versus reports about care received • Scope and depth of the instrument • The relevance of measures of function • The meaning of symptoms        • Sensitivity to change or differences in patient status • The need for disease- or condition-specific measures

21. Evidence-Based Clinical Practice Guidelines (CPG) • First, by describing specific processes of care identified as effective, guidelines may improve the technical provision of care • Second, guidelines that explicitly and clearly describe appropriate care for particular clinical problems such as management of specific symptoms provide a basis for problem identification and correction. • Third, guidelines that include good explanations of possible outcomes (e.g., potential benefits and burdens of a third course of chemotherapy) can contribute to better communication and shared decision making on the part of patients and practitioners.

22. Professional Impact: Education of Health Care Providers “The Purpose of Nursing is to assist the individual, sick or well, in the performance of those activities contributing to health or its recovery, or to a peaceful death, that he would perform unaided if he had the necessary strength, will, or knowledge” (Virginia Henderson, 1961)

23. Professional Impact: Education of Health Care Providers II • Health care providers typically receive insufficient end-of-life care content in their basic curricula. • Nurses intervene to support those functions the patient is able to carry out and performing those, which s/he cannot. • An analysis of end-of-life content in nursing textbooks revealed that only 2% of the overall content in nursing text books related to EOL care. • Noting this abysmal finding, the profession supported increased emphasis both in basic programs and in nursing research. • The National Council of State Boards of Nursing announced that the April 2001 NCLEX exam will cover EOL content in three of the testing areas.

24. Basic Nursing Education • In 1980, nursing was defined as “the diagnosis and treatment of human responses to actual or potential health problems.” • Unfortunately, current nursing education insufficiently prepares nurses and fails to fully equip them to apply existing clinical knowledge and standards effectively in responding to the needs of dying patients and their families. • This holistic approach to the care of all patients covers each of the dimensions of care are: • physical, emotional, and spiritual. • Nurses are expected to have sufficient knowledge to care for patients during all life stages, including dying.

25. Continuing Education • Nursing is a proponent of learning as a lifelong process as are many health care professions. • As nursing programs strengthen the attention to end-of-life care in their curricula, the foundation for continuing education programs should likewise be strengthened. • The basic options include: • Consultation, clinical demonstration, lectures and rounds, courses and conferences, journals, self-learning programs, and reflective practice.

26. Professional & Paid Caregivers • Since nursing has more of its members involved in EOL care than any other group, the profession has a special obligation to advocate for “care for the caregiver.” • Strategies to deal with grief and loss as caregivers: • Staff discussions that are professionally facilitated. • A program of scheduled “creature comforts” for caregivers, i.e., massages, relaxation exercises, music therapy. • Occasional rotation to less stressful work assignments.

27. Unpaid (Family) Caregivers • 54 million Americans involved in family caregiving in 1999! • 26.6 percent of the adult population • This July 2000 survey from the National Family Caregivers Association (NFCA) shows that the number of persons who provided care for an elderly, disabled or chronically ill, friend or relative is TWICE as large as had beenpreviously thought.   • Earlier surveys estimated only an approximated 25 million caregivers in the United States.

28. 10 Tips for Family Caregivers 1) Choose to take charge of your life, and don't let your loved one's illness or disability always take center stage. 2) Remember to be good to yourself. Love, honor and value yourself. You're doing a very hard job and you deserve some quality time, just for you. 3) Watch out for signs of depression, and don't delay in getting professional help when you need it. 4) When people offer to help, accept the offer and suggest specific things that they can do. 5) Educate yourself about your loved one's condition. Information is empowering.

29. 10 Tips for Family Caregivers II 6) There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence. 7) Trust your instincts. Most of the time they'll lead you in the right direction. 8) Grieve for your losses, and then allow yourself to dream new dreams. 9) Stand up for your rights as a caregiver and a citizen. 10) Seek support from other caregivers. There is great strength in knowing you are not alone.