Palliative care program success rests on an ability to demonstrate results. Before taking steps to establish a program, the planning team should develop a plan for measuring and monitoring program impact.

It is imperative that the mechanisms the team develops be put in place in the earliest stages of planning and designing a program. This will ensure the establishment of baseline measurements prior to launch. It will also promote the development of systems needed to track the program’s effect on those measurements over time.

This section contains:

Categories of Measurement

Four categories of measurement are recommended to ensure an appropriate, effective, and efficient palliative care program. These are:

1. Pain and symptom control
2. Program operational measures (e.g. volume and type of referrals, team workload, etc.)
3. Patient, family, and health care provider satisfaction surveys
4. Financial impact such as professional billing revenues, hospital and ICU length of stay, and cost per day

What Data to Track

The program should track both clinical and financial impact. There are several measures for each of these. Examples include:

Data Sources

To monitor these outcomes, the palliative care program will need to collect data from patients and/or proxies (family members, friends, health care professionals), medical records, and hospital databases.  Basic patient service data should be tracked and reported at least quarterly.  Basic patient service data are:

• Number of patients seen
• Mean/median lengths of stay in the hospital and on the palliative care service
• Diagnostic categories
• Services provided
• Percent of patients discharged alive
• Discharge location

The following chart summarizes the data, sources of data, and relative importance of the data the program may collect.

* PPI - Patient/Proxy Interview; PCR – Palliative care records or palliative care team interview; MR – Medical record; HD – hospital database;

†   PCD - Palliative Care Database; HD – hospital database

‡ Some hospital database systems store this information

¶ If pharmacy information is readily accessible from a hospital database, it can become a very powerful data element.   If it is only available by chart review, it may not be worth the labor required to gather it.

In addition, track and evaluate any educational and research activities provided by program staff, including: contact hours for residents and medical students; departmental rounds and conferences for medical and nursing staff; community lectures; other academic contributions (grants and publications); and time and effort spent in conducting clinical research.

What to Do if the Data is Not Available

The palliative care planning team may find that not all of the data identified here is readily available.  Unfortunately, most hospitals do not gather or store all the information required to build and sustain a successful palliative care program.  In creating a measurement and monitoring system:

• Identify the data elements that are needed
• Identify the variables currently collected or stored in existing hospital databases
• Choose or develop standardized tools to gather information that cannot be obtained from hospital databases
• Work with an appropriate professional (many programs employ a graduate student or intern for this purpose) to build a database or spreadsheet to store this information

Selecting Clinical Assessment and Evaluation Tools

Several valid instruments are available to track symptom burden over time. Two examples of these instruments, the Condensed Memorial Symptom Assessment Scale (CMSAS) and the Modified Edmonton Symptom Assessment Scale (ESAS), are provided in Measuring Clinical Quality.

Tools have been developed by various programs to report both clinical and program outcomes. Numerous tools for accessing quality of life and patient/family satisfaction, which can also be used to report program quality and impact, exist.

Examples of these and other tools can be found in Tools to Measure Quality and Impact of Palliative Care Programs.

Storing and Presenting Data

The clinical, patient satisfaction, and financial data collected should be kept in a computerized database that permits easy analysis and standardized reporting.  Options include a simple Access database or Excel tracking sheet.  Well-presented data will help the palliative care program deliver the messages that:

• The program improves clinical care, including treatment of pain and other symptoms
• Patient/family satisfaction is high
• The program is fiscally responsible, because it has a positive effect on length of stay in the hospital and ICU, use of hospice, and pharmacy costs

CAPC's Guide to Building a Hospital-Based Palliative Care Program expands the information on this website and provides detailed information and sample tools for measuring the quality and impact of programs.