John D. Cowan, MD, Teresa Walker, MSN, RN, Debbie Burns, MSW, LCSW, Jerry Scott, Mdiv, Emily Feeback, MSW, LCSW
Blount Memorial Hospital
The Advanced Illness Assistance (AIA) program at Blount Memorial Hospital (BMH) in East Tennessee is an evolving integrated palliative care program initiated in July 2000. The AIA program includes an existing Medicare approved home hospice and consultative services in the outpatient, home health and inpatient settings.
BMH is the only hospital in a county of slightly greater than 100,000 and serves patients from several surrounding counties. The hospital has a history of commitment to end-of-life care (EOL) with its hospice celebrating its 20th anniversary this year. In late 1999, BMH chartered a team composed of medical staff, community representatives and staff from the hospital, skilled nursing facility, hospice and home health to explore ways to improve EOL care. The team, which met at least bi-weekly for four months and utilized a consultant/facilitator, developed the following mission statement:
" To enhance the well-being of all patients with life-threatening
physiological problems in the BMH service area through an
integrated team approach to intense symptom management."
This statement is broader than EOL care, and fulfilling this mission is a long-term process requiring multiple projects. The first three projects implemented in July 2000 were:
- communication enhancement between hospice team members, between the hospice team and the patient and his/her caregivers and between the hospice and the referring physicians;
- development of a multidisciplinary approach to symptom management in home health with the palliative medicine (PM) physician attending team meetings, doing home consultations and providing nursing education;
- development of an interdisciplinary symptom management team for inpatients.
The interdisciplinary inpatient team (AIA team) consists of a social worker, chaplain, nurse and palliative medicine physician. The program functions as a consultative service, evaluates patients only on request of the patient's physician(s), and is available Monday through Friday from 0800 to 1630. After hour calls are rotated among the interdisciplinary team members with additional medical backup provided by a medical oncology group. Patients seen in the consultative outpatient clinic are seen only by the physician member of the team. Palliative medicine consultations in home health and hospice utilize the physician member of the AIA team with social workers, chaplains and nurses working in the home health and hospice completing the team.
All patient evaluations and follow-up visits by the AIA program (inpatient, home health, hospice, and office) are prospectively entered into a palliative care database with 240 fields using FileMaker Pro 5 ®. Multiple data points are collected to include quantifying pain, physical, spiritual and psychosocial suffering using a 0-10 scale (0=no suffering, 10=severe suffering). (See appendix).
Initial Program Data
Through the first 8 months of the program, 215 consultations were completed on 198 patients (median age of 72 years; range, 23-97 years) for a total of 857 daily visits. Forty-seven percent of patients have died with the mean time to death from consultation being 18 days (median, 7 days). Requests for consultation came from 50 physicians with 70% of these referring more than one patient and 36% referring more than 4 patients. Sixty-seven percent of consultations were inpatients, 19% home health/hospice, and 14% outpatients. Thirty-nine percent had cancer as the primary diagnosis. Reason for consultation was pain-45%, other physical problems-20%, care planning-28%, and spiritual and psychosocial issues-7%. At consultation, patients had a mean of 8 symptoms (0-28) including pain in 78% and dyspnea in 47%. Nineteen percent were not able to provide a history. Seventy-one percent of patients with pain and 61% with other physical problems could scale their symptoms. Thirty-four percent and 26% of all patients could scale spiritual and psychosocial issues, respectively. The median pain level was 9 and the median physical, spiritual, and psychosocial suffering levels were all 8. A mean of 6 recommendations was made for each consultation. For patients followed over time and able to provide quantified scaling data, the mean level of pain decreased from 8 to 2 from the first to the 8th visit, physical suffering from 8 to 2 from the first to the 6th visit, and psycho-social suffering from 8 to 4 from the first to the 8th visit.
Lessons Learned and Challenges Faced
Lessons learned and challenges faced during the first year:
- Obtain early buy-in from hospital and medical staff by educating these groups on how the program will help them solve problems and/or make their lives easier.
- Understand where you want the program " to go," but use a planning process to help move to specific plans and to help develop community ownership.
- Use a facilitator experienced in project development to "move the process."
- Spend the time to develop a mission statement that "sparks" your organization and helps generate and justify programming over time.
- Remember that breaking down barriers and implementing change take time and require patience.
- Use a consultative model that requires physician referral as a good choice for the long term. It helps minimize fear and "turf issues," helps infuse palliative care concepts into other physician practices and helps provide medical staff education. For everyone, asking for help is more comfortable than being told you need help.
- Recognize that use of a consultative model is frustrating because recommendations are not always followed and waiting for attending physician approval of your recommendation can lead to delays in therapy focused on comfort. Further, the model may limit the ability to provide follow-up after discharge (outpatient and hospital re-admission).
- Recognize that use of a multidisciplinary team has many theoretical advantages and should provide synergy and improved patient care, but it is hard to do well. It takes time (months of daily effort), focus on communication, comfort with sharing tasks, integration of medical and non-medical perspectives and a willingness to release individual team member control.
- Use caution in assuming that there are no reversible physiological processes that can improve quality of life for the individual patient.
- Remember to include the nurses taking care of the patient! They take pride in their patient advocacy role. Suggestions on improving patient comfort can be misinterpreted as criticism of nursing care.
- Provide nursing education to maximize the program. Such education needs to include general palliative care concepts, skills in identifying psychosocial and spiritual suffering, and specific medication use and administration information. Poor understanding limits the program's impact.
- Move slowly on developing an inpatient palliative care area. It is an appealing way to provide structure, consistency and control over symptom management. However, it has potential negatives, including the cost of a specialty unit and a decrease in institution-wide physician and nursing palliative care education. Further, it moves the program from consultative to providing primary care that potentially decreases the "mainstreaming" of palliative care.
- Provide a mechanism for outpatient care of patients who have been seen by the inpatient program and are not followed by home health agencies or hospices integrated with your program.
- Plan and execute outcome measures (see Initial Program Data section above and bullets below). Also measure physician, hospital personnel, and patient/family satisfaction. This information enhances program improvement efforts and can be a powerful source of positive feedback to help solidify the program's importance to the institution.
- Recognize that use of scales to quantify pain, other physical symptoms, and spiritual and psychosocial suffering is difficult in an elderly ill population.
- Recognize use of a computer database to prospectively collect patient data is labor and time intensive, but can provide exciting data to study, query and use for program and patient care improvements.
- Develop funding support for the program because direct patient care revenue is likely to cover only a percentage of your costs. (At BMH, patient care revenue covers less than 40 percent of costs.) Potential sources of funding include grants, philanthropy and hospital support. Hospital support can be justified by measurably improving patient care, helping meet regulatory requirements, providing training opportunities, furthering the institution's mission and helping to measurably reduce costs. Quantifying these cost reductions can be difficult with multiple variables effecting cost and in situations where programming affects only a small percentage of the aggregate. Some measures include decrease in ventilator days, decreased deaths in ICU/CCU type units, decreased length of stay for patient subgroups and decreased pharmacy, imaging, and/or laboratory costs for patient subgroups.
The second year of the program will be used to solidify the gains of the AIA team, to improve its processes, and measure patient care and financial outcomes. Continued physician and nursing education will be a priority. We plan to move our computer database system from linked individual computers to a hospital- wide network that will allow database access from any of the inpatient units. Other projects being considered for development include:
- An inpatient palliative care unit to be used for inpatients, hospice acute care days and hospice respite days. This may be a single geographic area of the hospital, a virtual area geographically dispersed through out the hospital, or a combination. It may need to have both inpatient beds and skilled nursing home beds.
- A home project for patients who have advanced illnesses but do not qualify or choose not to accept hospice or home health services. This would likely be based on the home hospice model with extensive use of volunteers, triage to other established programs and development of new programming.
- A pain medication maintenance center to provide oversight for patients on chronic analgesics and followed by the AIA program and/or a planned community chronic pain center.
Fields in the Palliative Medicine Database at Blount Memorial Hospital
(Numbers in parenthesis = number of unique data points in each field)
A physician/nurse complete the medical/symptom portion of the database; the chaplain and social worker complete the spiritual and psychosocial portions and the team jointly completes the assessment and recommendation portions. The process takes about 45 minutes to input and print.
Practice ID Number
Type of Evaluation
Additional Physicians (up to 4)
Home Care Agency
Persons Answering Questions (up to 2)
Relationship to Patient (up to 2)
Patient Lives With ______ (up to 2)
Years of Education
Number of Living Children
Alternate Phone Number
Family/Significant Other Address and Phone Number
Pharmacy Phone Number
Reason for Evaluation
Active Medical Conditions (up to 10)
Inactive Medical Conditions (up to 10)
Past Surgeries (up to 10)
Drug Allergies (up to 10)
Allergy, Intolerance, Unknown
Pain Medications, Dose, Timing (up to 8)
Bowel Medications, Dose, Timing (up to 7)
Other Medications, Dose, Timing (up to 10)
Constant, Intermittent, No Pattern
Pain Location (up to 5)
Spontaneous, End of Dose, Incident
Pain Intensity: 0-10 Scale
Worst in Last 24 hrs
Pain Description (up to 5)
Best in Last week or Since Last Visit
Average of the Last Week
Neuropathic, Somatic, Other
What Makes Pain Worse? (up to 4)
What Makes Pain Better? (up to 4)
For ATC and PRN Medications
Prior Pain Treatments (up to 5)
% Decrease in Pain
Duration of Relief
Other Physical Symptoms: Yes/No
Other Symptoms (up to 10)
Rate Top 5 Symptoms - Average Level of Suffering Over the Previous
Overall Average Physical Suffering over the last 3 days: 0-10 Scale
3 days: 0-10 Scale
Physical Symptom Comments
Spiritual Issues: Yes/No
Spiritual Problems (up to 8)
Do You Consider Yourself Spiritual/Religions?
Are You a Member of a Spiritual/Religious Community?
Level of Spiritual Suffering: 0-10 Scale
Spiritual Help Desired (up to 4)
Hope Level: 0-10 Scale
Hopes For:_____ (up to 7)
Personal & Family Distress: Yes/No
Suicidal Ideations: Yes/No
Suffering from Family Conflicts: 0-10 Scale
Suffering from Activity Loss: 0-10 Scale
Activity Lost (up to 5)
Suffering from Family Concerns: 0-10 Scale
Family Concerns (up to 5)
Suffering from Unfinished Business: 0-10 Scale
Unfinished Business (up to 5)
Suffering from Fear of the Unknown: 0-10 Scale
Patient's Biggest Concern (up to 3)
Family's Biggest Concern (up to 3)
Personal and Family Distress Notes
Type of Help Wanted: Physical, Spiritual, Personal Distress, Family Distress
Do Not Resuscitate Status
Advanced Directives (up to 4)
Review of Systems
By Organ System (up to 75)
Last Bowel Movement
Weight Loss: Yes/No
Amount in Last 6 weeks
By Organ System (up to 63)
MiniMental Status Exam
Physical Examination Notes
Lab and Imaging
CBC (up to 4)
Chemistry (up to 15)
Cultures (up to 6)
Imaging (up to 11)
Lab and Imaging Notes
Performance Status (ECOG) Expected Survival (Hours, Days, Weeks, Months,
Physical Diagnoses (up to 15)
Due to (up to 15)
Spiritual Problems (up to 5)
Social/Emotional Problems (up to 5)
Suggested Frequency of AIA Follow-up
Is AIA Implementing or suggesting recommendations?
Conferences (up to 3)
Laboratory (up to 5)
Imaging (up to 5)
Consultations (up to 5)
Spiritual Services (up to 5)
Social Services (up to 5)
Nursing Care / non-Medication Care Changes (up to 5)
Education (up to 5)
Pain Medications (up to 5)
Bowel Medications (up to 4)
Other Medications (up to 5)
Time Spent in Counseling/Education
Number of Radiation Fields
Number of Chemotherapy Regimens