Improving Care for the End of Life, Online Edition The Palliative Care Policy Center

Sourcebook : Improving Care for the End of Life

By Joanne Lynn, M.D. Janice Lynch Schuster, and Andrea Kabcenell, R.N.
Foreword by Donald M. Berwick, M.D.; Published 2000; ISBN 0195116615 (hardback)

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About the Book
Here is a comprehensive and authoritative guide on to how to enable quality improvement for end of life care within health care systems. Written for health care managers and clinicians, it offers practical advice that can help you improve quality in your hospital, hospice, nursing home, or other health care facility. The authors include some of the world's leading authorities in the field. This results-oriented guide to making change should be read by every medical professional working in a palliative care setting.

1.0 Continuous Quality Improvement for Better End-of-Life Care
1.1 The Temporarily Immortal and the Dying - Who's Who?
1.2 The Breakthrough Series to Improve End-of-Life Care
1.3 Improvement around the Country
2.0 How to Make Improvement Happen
2.1 Linking Plan-Do-Study-Act Cycles
2.2 Setting Aims
2.3 Establishing the Team
2.4 Importance of Interdisciplinary Teams
2.5 Establishing Measures
2.6 Establishing Registries
2.7 Developing Changes
2.8 Testing Changes
2.9 Innovation as a Way of Life
2.10 Troubleshooting: Ways to Avoid Common Traps
2.11 Ethics and Continuous Quality Improvement
2.12 Making and Keeping Promises: Satisfaction Guaranteed?
Part II - Improved Patient Care - Practice and Systems
3.0 Preventing Assessing and Treating Pain
3.1 Practices - Current, Better, Best
3.2 Define Pain
3.3 Define Patient and Provider Rights and Responsibilities
3.4 Standardize Pain Assessment Protocols
3.5 Use Culturally Appropriate Pain Assessment Methods
3.6 Tools in Translation
3.7 Give Patients a Frame of Reference
3.8 Make Pain a Fifth Vital Sign
3.9 Use Clinical Practice Guidelines
3.10 Make Pain Management an Institutional Priority
3.11 Set Pain Control Standards
3.12 Continuously Monitor Pain Treatment Until Acceptable Intensity Is Reached
3.13 Develop Follow-up Procedures
3.14 Try a Range of Innovations
3.15 Require Certain Providers to Be Registered to Prescribe Controlled Substances
3.16 Review Prescribing Practices for Opioid Drugs
3.17 Improving Pain Management in Nursing Homes and Assisted Living Facilities
4.0 Managing Dyspnea and Ventilator Withdrawal
4.1 Assess Dyspnea
4.2 Treat Dyspnea by Improving Management of Ventilator Withdrawal
4.3 Implement Appropriate Ventilator Withdrawal Techniques
4.4 Ventilator Withdrawal Guidelines
5.0 Beyond the Living Will
5.1 Review the Current Advance Care Planning Process
5.2 Use or Adapt Comprehensive Advance Care Planning Forms
5.3 Make Patient Wishes Known and Accessible
5.4 Recognize Opportunities to Address Advance Care Planning
5.5 Educate Clinicians and Community Leaders about Effective Advance Care Planning
5.6 Address Cultural and Ethnic Differences about Advance Care Planning
5.7 Steps to Improve Advance Care Planning
6.0 Relationships, Spirituality, and Bereavement
6.1 Promote Patient and Caregiver Confidence in the Care System
6.2 Improve Clinicians' Communication Skills
6.3 Provide Direct, Practical Support to Families and Loved Ones
6.4 Assess Patient and Family Perceptions of Suffering
6.5 Help Patients Address Issues of Meaningfulness and Spirituality
6.6 Provide Institutional Resources for Activities on Meaningfulness and Spirituality
6.7 Offer Bereavement Counseling and Services in All Settings
6.8 Conclusion
7.0 Continuity of Care
7.1 Set Goals That Promote Continuity
7.2 Set Standards for Continuity Based on Promises to Patients
7.3 Make Only Essential Transfers of Dying Patients
7.4 Coordinate Patient Care across and within All Operating Units
7.5 Give Patients and Families One Point of Contact
7.6 Set Up Communication Systems for Health Care Providers Who Share Care for a Group of Patients
7.7 Make Patient Preferences Accessible and Known to All Health Care Providers
7.8 Story of Continuity (Patient Case Study)
Part III Arrangements to Promote Reform
8.0 Hospital-Based Palliative Care Consults and Units
8.1 What Is Palliative Care?
8.2 Building a Model That Works
8.3 Selecting a Model: Service or Unit or Both?
8.4 Responding to the Concerns of Health Care Providers
8.5 Enrolling Patients and Measuring Satisfaction
8.6 Marketing the Program to Clinicians and Others
8.7 Set Standards and Procedures
9.0 Medicare Reimbursement
9.1 Medicare Payments for Fee-for-Service Programs
9.2 Medicare Payments for Physician Services
9.3 Medicare Payments for Hospice Services
10.0 Ways to Use Information Systems in Quality Improvement
10.1 Review the Management Information System
10.2 Make the MIS Do Double Duty
10.3 Systems That Help Manage Improvement
11.0 Helping Staff to Provide Good Care
11.1 Building Interdisciplinary Teams
11.2 Team-Building Strategies
11.3 Effective Team Meetings
11.4 Building Morale
11.5 Interdisciplinary Team Training
11.6 Career Advancement and Continuing Education
11.7 Offer Employee Counseling and Education about Death and Dying
12.0 Using Law and Policy to Improve End-of-Life Care
12.1 Change Assumptions and Boost Expectations about the End of Life
12.2 Some Suggestions for Changing the Current Situation
12.3 Eliminate Legal Barriers to Prescribing Pain Medications
12.4 Some Ideas Innovators Can Try
12.5 Advocate for Health Services and Basic Research on End-of-Life Issues
12.6 Create a More Appropriate Service Mix to Correct Patterns of Resource Availability
12.7 Initiatives That Would Support Suggestions for Improvement
12.8 The Agitator's Guide
12.9 Twenty Improvements in End-of-Life Care
13.0 Alzheimer's and Other Dementias
13.1 Palliative Care and the Alzheimer's Patient
13.2 Knowing When a Dementia Patient Is
13.3 Advance Care Planning for Dying with Dementia
13.4 Supporting Family Caregivers
13.5 Improving Nursing Facilities
13.6 Caution about Controversial Ethical Issues
14.0 Opportunities to Improve Care for Cancer Patients
14.1 Use Quality Improvement Strategies as a Way to Improve Patient Care
14.2 Set Checkpoints to Reevaluate the Treatment Plan
14.3 Don't Just Do Something - Stand There!
14.4 Measure Quality of Life as an End Point of Treatment
14.5 Increase Culturally Appropriate End-of-Life Care
14.6 Reduce the Number of Hospital Deaths
15.0 Depression and Delirium
15.1 About Depression
15.2 About Delirium
15.3 Screen Patients for Depression: “Are You Depressed?”
15.4 Suggestions for Quality Improvement
16.0 Offering End-of-Life Services to Patients with Advanced Heart or Lung Failure
16.1 Offer Tailored End-of-Life Services to Patients with Advanced Heart or Lung Disease
16.2 Ways to Identify and Enroll Patients
16.3 Teach Patients to Monitor Symptoms and Participate in Treatment Planning
16.4 Provide Cardiac Comfort Care Kits
17.0 Conclusion
17.1 Find Out Where the Problems Are - Name and Define Them
17.2 Find Colleagues Willing to Engage in Improvement
17.3 Inform Institutional Leadership
17.4 Set an Aim
17.5 Select a Simple Measure
17.6 Start with Changes That Are Feasible and Likely to Be Effective
17.7 Start to Test Changes with a Limited Number of People
17.8 Ask for Help Whenever Necessary
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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ ] and Oxford University Press. All rights reserved.

For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ ].

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