Needs Assessment
Writing A Business Plan
Delivery Models
Inter-Disciplinary Team
Program Operations
Quality Assessment

Demonstrating Continuing Need

A comprehensive database includes clinical, financial and patient satisfaction data.

Patient care follow-up and palliative care program management is enhanced by a computerized database of clinical, financial and patient satisfaction information that permits easy analysis and standardized reporting. This database may also help to convince hospital administration of the continuing need for a hospital-based palliative care program.

In order to assess patient symptom burden and its response to interventions as well as patient and family satisfaction with care received, there is no substitute for regular and formal assessments.1, 2, 3 Because of the burden of formal symptom and other assessments on seriously ill hospitalized patients and their loved ones, it is important to consider concision and brevity as well as validity in choosing assessment instruments. Several short, valid instruments are easy and quick to administer and may be used to track symptom burden over time.4, 5, 6

If patients are unable to report due to illness burden or cognitive impairment, family or professional surrogate assignments, while not a valid substitute for the patient's own report, are better estimates of the patient experience than no information at all. Further, they provide perspective on the perceptions of family and professionals.

Family satisfaction instruments are useful for assessing program quality from the consumer's standpoint and facilitate making mid-course corrections and pursuing continued quality improvement. In addition, post-discharge (or post-death) family satisfaction surveys help quantify the importance and contributions of the palliative care service by demonstrating the program's value-added benefits in fulfilling the hospital's mission and enhancing its reputation.

Data may be gathered into a separate clinical and management information database using a software interface with the hospital's clinical and patient information systems. In general, a palliative care database may include: 7

Clinical data

  • Dates and length of service on palliative care unit;
  • Patient demographics (age, gender, race, length of stay in the hospital, length of stay in the ICU);
  • DRG/ICD-9 codes;
  • Family caregivers contact information and relationship;
  • Discharge sites including hospice, home care and nursing home referral rates;
  • CPR and advance directive status;
  • Medications;
  • Utilization of ancillary services;
  • Pain and other symptom burden data;
  • Patient severity within DRG (Data from the APACHE or other acuity assessment system maybe useful to help determine differences in cost within DRGs.);
  • Results of patient/family satisfaction surveys;
  • Site and date of death;
  • Payments by provider and payer category;
  • Reasons for non-payment;
  • Philanthropy and endowment levels;
  • Grants and their sources; and
  • Expenses.

    In terms of credibility and contribution to hospital mission, it is also important to track and evaluate educational and research activities provided by program staff, including contact hours with residents and medical students, departmental rounds and conferences for medical and nursing staff, community lectures, other academic contributions and any time and effort spent in conducting clinical research.8

Once these data are collected, regular reporting in a consistent, easy-to-understand format provides team members with a summary assessment of performance and identifies areas in need of change. For management purposes, basic patient service data should be reported at least quarterly.

Related References

1. Borras JM, Sanchez-Hernandez A, Navarro M, Martinez M, Mendez E, Ponton JLL, Espinas JA, Germa JR. Compliance, satisfaction, and quality of life of patients with colorectal cancer receiving home chemotherapy or outpatient treatment: a randomised controlled trial. BMJ 2001;322:826.

2. Wolfe J, Klar N, Grier HE, Duncan J, Salem-Schatz S, Emanuel EJ, Weeks JC. Understanding of Prognosis Among Parents of Children Who Died of Cancer: Impact on Treatment Goals and Integration of Palliative Care. JAMA 2000;284:2469.

PubMed, a service of the National Library of Medicine, provides access to over 11 million citations from MEDLINE and additional life science journals. PubMed includes links to many sites providing full text articles and other related resources.  Visit:  http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

Additional Resources

Palliative Care & JCAHO Standards
How Palliative Care Helps Hospitals Meet JCAHO Hospital Accreditation Standards (2002)

Module 2: Creating Compelling Business and Financial Plans
New Orleans: Lynn Hill Spragens, MBA Consultant

Module 4: Quality "Start Up" Measures and Instruments

Documenting the Financial Impact of Palliative Care
How to Fund Your Palliative Care Program
Module 4
June 2002, Seattle, WA
Lynn Hill Spragens, MBA & R. Sean Morrison, MD
PowerPoint Presentation

Reimbursement for Hospice Services 2/2
How to Fund Your Palliative Care Program
Concurrent Session D Part 2
Designing a Health Care Compliance Program for Hospices
June 2002, Seattle, WA
Connie A. Raffa, JD, LLM
PowerPoint Presentation

Quality "Start Up" Measures and Instruments
A CAPC Management Training Seminar
February, 2002 Tampa, FL
PowerPoint Presentation

Identifying Organizational Priorities (session 2 worksheet 1)
a 1 page form to rank a Hospital's objectives.

Monitoring Impact of a Clinical Program -Grand Rounds
R. Sean Morrison, MD, director of research, Hertzberg Palliative Care Institute, Mount Sinai School of Medicine. Dr. Morrison discusses how to monitor the impact of your palliative care program. Audio file is available for download.

Bridging Clinical and Business Objectives (session 2 worksheet 3)
a 2 page form that builds upon worksheet 2 by asking a series of questions about organizational initiatives, program contributions and financial impact.

Applying Rapid Cycle Quality Improvement to Palliative Care Programs
A CAPC Fall Forum 2001 Workshop
October 2001, Chicago, IL
PowerPoint Presentation

JCAHO Education Event: Essential Elements of Effective Pain Management
This one day educational event provides you and your colleagues with all the information you will need to implement the new Joint Commission pain management standards. This program is offered many times throughout the year at varied locations.

A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients
The Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments (SUPPORT)

Rethinking Fundamental Assumptions: SUPPORT's Implications for Future Reform
Explores the possibility that improved individual, patient-level decision-making is not the most effective strategy for improving end-of-life care and that improving routine practices may be more effective.

Edmonton Symptom Assessment Scale (ESAS Modified)

Stop Pain at Beth Israel Medical Center: The Department of Pain Medicine and Palliative Care
This site is dedicated to providing comprehensive
care of the highest quality in pain management and palliative care, and advancing the educational and research aims of these disciplines. This site has many resources for caregivers and professionals

Personnel Performance Evaluation:
Standards for all professionals who provide End Of Life Care

System Grid and Assumptions for Organizational Assessment

Toolkit of Instruments to Measure Care at the End of Life
An authoritative bibliography of instruments to measure the quality of care and quality of life for dying patients and their families.

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