Media.capc.org



Community-Based Palliative Care

Needs Assessment and Decision-Making Tool

Community-Based Palliative Care (CbPC) is defined as:

Specialty palliative care for seriously ill patients and their families provided in a range of venues in the community that fall in the gap between inpatient hospital-based palliative care and care provided under the Medicare Hospice Benefit. Office settings include hospital outpatient clinics and provider offices; home-based care provided in personal homes or assisted living facilities; and institutional living settings such as skilled nursing facilities, long-term acute care facilities, group homes, and homeless shelters.

Purpose of the Community-Based Palliative Care Needs Assessment and Decision-Making Tool:

The Community-based Palliative Care Needs Assessment and Decision-Making Tool assists an organization in:

• Assessing its motivation for, and capacity to, develop CbPC services;

• Understanding the need for CbPC based on the perspectives of key stakeholders;

• Synthesizing information to guide decisions on the appropriate delivery model.

Completing the Tool is a first step in a planning process for developing CbPC services. It is used to gather and synthesize information that influences decisions about whether to proceed and, if so, determining the most appropriate CbPC service features. As such, it precedes specific program planning that occurs once the perspectives of stakeholders are considered and the setting for care is determined.

Structure of the Tool:

The Tool is structured in a way that unites the following on one form:

• Internal organizational information relevant to considering the development of CbPC services;

• Perspectives of stakeholders, obtained through quantitative and qualitative data gathering;

• Processes for synthesizing internal and external information, and drawing conclusions on next steps.

The Tool consists of four sections:

1. Section One: Self-Assessment. Guides the organization to “look inward,” to understand the context for considering development of CbPC services by exploring:

• Motivation for considering CbPC services at this point in time

• Potential patients for CbPC services

• Geographic area the CbPC services will potentially serve

• Initial indications about who is willing to pay for these services

2. Section Two: Stakeholder Input. Guides the organization to “look outward” beyond their impressions of the need for CbPC services, by gathering impressions from stakeholders. It includes a process to:

• Identify stakeholders

• Elicit stakeholders’ perceptions

• Synthesize information on stakeholder perceptions and needs

3. Section Three: Data. Guides the organization to gather quantitative data that impact service design, by collecting:

• Demographic data for the service area

• Institutional data on utilization

• Inventories of health care providers and payers

4. Section Four: Conclusions and Next Steps. Guides the organization to synthesize information discovered in Sections One through Three and draw conclusions on if, and how, to proceed. It indicates:

• Critical service gaps and desired outcomes

• Patient population to serve and venue(s) in which to establish CbPC services

• Organizational readiness to launch CbPC services

• Next steps to continue planning for CbPC services

Completion of the Tool:

Completing the Tool is a comprehensive process that requires time to gather data, interview stakeholders and synthesize information, and requires a well-defined structure and timeline. Begin by convening a planning group to complete the tool. Members might include organizational administrators, decision support and quality improvement leaders, and representatives of the palliative care and other related programs.

SECTION ONE: Self-Assessment-

Initial Perspectives on Starting a CbPC Program

Answer the following statements and questions.

1. We want to expand our palliative care services beyond our organization because…

2. Which of the following are reasons we want to develop a CbPC program? Check all that apply.

From the patient/family perspective:

← We believe there is poor continuity of care across settings for seriously ill patients in our community.

← We hope to improve patient care earlier in the disease process.

← Patients seen by our inpatient palliative care team need better post-discharge follow-up.

← We currently serve -- or wish to serve -- a large number of patients who are not eligible for home care or hospice services (or do not wish to elect hospice services) but cannot easily come to a hospital.

← Our patients with progressive chronic or serious illness have mobility challenges that make it difficult to access care in office settings.

← Our patients with progressive chronic or serious illness, or their families, are asking for improved or expanded services.

← Other: ________________________________________________.

From the provider perspective:

← We want to be a full-service health care provider across all major sites of care delivery.

← We want to extend the clinical reach of our specialist palliative care services.

← We have new staff with palliative care expertise to bring to our patient population.

← We want to collaborate with other providers in creating a comprehensive continuum of care across settings.

← We want to improve the quality of care for patients with serious complex illness.

← We want to connect with the community in providing better care.

← Other: .

From our institution’s perspective:

← Our organization’s Board of Directors or administration wants to begin CbPC services.

← We see opportunities/incentives for palliative care integration in our community due to Accountable Care Organization (ACO) or Medical Home development.

← We want to extend palliative care services as a competitive advantage in the marketplace.

← Our hospice program and/or home care agency aims to expand its business line to include home or Skilled Nursing Facility (SNF)-based palliative care services.

← We wish to reduce inpatient deaths and readmissions of patients with chronic diseases.

← We need community palliative care services to maintain certifications – e.g., NCI Cancer Center status, etc.

← We predict that CbPC services will improve our patient/family satisfaction scores.

← A critical incident(s) has spurred interest in CbPC.

← We have data or observe trends that suggest the need for CbPC services.

← We want to partner with other organizations to expand services from our current setting into new venues of care.

← Other:______________________________________________________.

From the community perspective:

← One or more existing clinics (or cancer centers or dialysis units) have requested integration/collaboration of specialty palliative care into their practice.

← One or more existing clinicians have requested integration of specialty palliative care into a group practice, care center, or SNF.

← One or more community health care agencies or providers have asked us to develop non-hospital palliative care services.

← Other: _________________________________________________________.

3. Why now?

a. What is affecting the timing of our organization considering this program development? What is happening in our organization that makes CbPC a current discussion topic?

b. What is currently ‘broken’ in our organization that we think CbPC can ‘fix’?

c. What is happening in our local/regional health care environment that makes development of CbPC services a topic of discussion?

1-4: What patient population(s) are we primarily hoping to serve?

a. What outcomes are we trying to achieve for these patients, in our organization and in our community?

1-5. What is the geographic area we hope to serve?

1-6. What preliminary indication do we have that a stakeholder (payer, ACO, health system, other) is prepared to invest resources necessary to launch and sustain CbPC services?

[pic] DECISION POINT

Starting a CbPC program goes well beyond simply: 1) improving completion of advance care planning documents; and/or 2) improving knowledge and skills in primary palliative care among your organization’s clinicians; and/or 3) developing a chronic non-cancer pain clinic. While these are important, if at this stage you are only considering these program needs, you may not be ready to develop a more comprehensive CbPC program. Rather than proceeding with this needs assessment, refer to the resources located at CAPC Central, including curricula that provide training in primary palliative care.

SECTION TWO: Stakeholder Input–

Identification of Stakeholders and Assessment of Their Needs

Step 1. Identify Stakeholders: Identify stakeholders whose opinions and ideas about CbPC services are important to consider.

|List of stakeholders |

|In our organization (e.g. senior leaders; clinical leaders; other service team leaders such as nursing, social work, pastoral care, discharge planners; case management, care coordinators and |

|post-acute care teams; palliative care providers; content experts in finance, quality, data systems, etc.): |

| |

| |

| |

| |

|In our community (e.g. leaders in hospice, home health and long term care, primary care clinicians, specialty clinicians, leaders in aging care, Home and Community-based Services leaders, |

|patient support group leaders; payers; community foundations, etc.): |

| |

| |

| |

| |

|Our patients and their families (e.g. those chronically and/or seriously ill patients we hope to serve; family members of seriously ill patients): |

| |

| |

| |

| |

Step 2. Interview Stakeholders: Using the following template as a guide, conduct interviews with stakeholders identified in the above grid.

Community-Based Palliative Care Program Design

Stakeholder Interview Outline

|Date | |

|Interviewer | |

|Interviewee Name, Title and Department | |

|Interview Question Format |Notes |

|1. Introduction - State purpose of interview. | |

|2. Palliative care understanding - How familiar are you with palliative care: definition and | |

|services? | |

|3. Key questions: | |

|What are the top 2-3 priorities for you, your team or the organization? | |

|What concerns or worries keep you up at night? What are the biggest challenges you face? | |

|How do you think a CbPC program could support you? | |

|How do you think a CbPC program could support/enhance/strengthen your mission/vision? | |

|Do you currently provide any CbPC services? | |

|What internal and/or external programs or services are you aware of that would support a CbPC | |

|program? | |

|What services currently exist in this organization/health system or service area that could be | |

|viewed as duplicative or competitive to efforts to develop CbPC services? | |

|Are there service providers that could be formal or informal collaborators with a CbPC program? | |

|i. What outcomes do you think could come from a | |

|CbPC program? | |

|j. What data are you aware of that we could use to define | |

|our CbPC program? | |

|k. What resources are available that could be mobilized to | |

|improve palliative care in our community? | |

|l. Who might be motivated to pay for CbPC services? | |

| 4. Closing: | |

|Are there pressing topics related to CbPC that we did not discuss? | |

|Who else do you suggest we talk to? | |

|Would you like to be involved as we work further to develop a CbPC program? | |

|Would you like to know our findings and conclusions? | |

|5. Conclusion - Thank you for your time. | |

Step 3. Conduct Patient/Family Focus Groups: Conduct focus groups with patients and/or family members to ascertain their needs and the program design that would best meet their needs. Use the following questions as a guide.

1. What do you (or your family member) need to feel more in control of your care?

2. Are you (or your family member) able to receive well-coordinated care for your serious illness?

3. Has it been necessary to use the emergency room or be admitted to the hospital because you (or your family member) were unable to manage the pain and symptoms of your illness?

4. How might your caregiver be better supported?

5. In addition to medical support, what types of social, emotional or spiritual supports would be beneficial to you (or your family members)?

6. What is your ideal picture of the type of care you need in order to feel you are managing well with your serious illness?

7. If you could receive care that offered an extra layer of support in managing your symptoms, coordinating your care, and addressing the needs of your caregiver, where would you like to receive that care?

8. In addition to the topics already discussed, what else is important for you to convey?

Step 4. Synthesis of Stakeholder Perceptions and Needs: Synthesize the information obtained during the interview/focus group process.

|Stakeholder |Highlights of Interview Findings |

| | |

| | |

| | |

| | |

| | |

| | |

SECTION THREE: Gathering Quantitative Data

3-1. Provide estimates about the community/service area that impact palliative care service design in the planned service area.

|Demographic Data | |

| |Estimates |

|Estimate the percent of people age 65 and older in our community/service area. | |

|Estimate the percent of people age 75 and older in our community/service area. | |

|Estimate the percent of people age 85 and older in our community/service area. | |

|Besides the usual chronic diseases that we commonly see (e.g. cancer, heart, kidney, diabetes), list any particular chronic | |

|diseases that are common in our area. | |

|Besides English, what are the three most common languages spoken by patients in our service area/community? | |

|What are the three most common faith traditions in our area? | |

|What racial and ethnic groups represent a significant portion of the population in our service area/community? | |

|Estimate the percent of community-dwelling patients/frail elderly or homebound in our service area/community. | |

|Estimate percentages of vulnerable populations in our community/service area: | |

|Homeless | |

|“Dual Diagnoses” (e.g. a psychiatric diagnosis and a serious illness) | |

|Veterans | |

| | |

| | |

| | |

|Inventory of Service Providers |In our system |Outside our system |

|List the number of hospitals in the service area. | | |

|List the number of hospices in the service area. | | |

|List the number of home health agencies in the service area. | | |

|List the number of SNFs in the service area. | | |

|List the number of assisted living facilities in the service area. | | |

|List the number and types of other long term care facilities in the area. | | |

|List the services that relate to palliative care services, such as care management, complex care coordination, and | | |

|“post-acute care” teams/services. | | |

|Payer Data | |

|Estimate the percent of individuals with insurance in our service area/community, by payer category (Medicare, Medicare | |

|Advantage, Medicare Replacement Plans, Medicaid, Commercial, Self-pay/Uninsured). | |

|List three largest insurers in our area. | |

|List the ACOs in our area. | |

3-2. Provide hospital utilization data that impact palliative care service design in the planned service area.

|Utilization Indicators |In our hospital |In our system |In the area |

|What is the hospital readmission rate? | | | |

|What is hospital inpatient mortality rate? | | | |

|What is the average length of stay in ICU? | | | |

|What is the number of days the ED is on diversion due to lack of ICU availability? | | | |

|Characterize the patient population with 30-day readmissions by age, diagnoses, payer, cognitive condition and function. | | | |

|Characterize the patient population who died in the hospital by age, diagnoses, payer, cognitive condition and function. | | | |

|Characterize the patient population in the ICU for more than seven days by age, diagnoses, payer, cognitive condition and function. | | | |

3-3. Indicate which of the following hospice/palliative care programs currently exist in the planned service area our area. Check all that apply.

← Hospital-based palliative care consultation service

← Palliative care clinic not embedded in another practice within the hospital or health system

← Palliative care clinic embedded in a specialty clinic

← Home-based palliative care program

← Hospice agency within our health system

← Palliative care outreach program to a long-term care facility

← Telephonic palliative care services

← Other hospice or palliative care program(s): ____________________________________________

3-4. Information about our inpatient palliative care program (if applicable).

If there are multiple hospital programs, complete this information for the largest program in terms of staff/consults.

|Number of funded FTEs, by discipline | |

|Number of years in operation | |

|Number of annual hospital admissions | |

|Number of inpatient consults in last calendar year | |

|Is the number of new consultations growing or shrinking? | |

|Do you offer weekend/after hour coverage (either by phone or in-person)? | |

|Do you submit data to the CAPC National Registry? | |

|Does your program have The Joint Commission (TJC) Advanced Certification in Palliative Care, or another certification in palliative care? Check if yes. | |

|If no, are you currently pursuing, or planning to pursue, certification? | |

SECTION FOUR: Synthesizing Data, Drawing Conclusions

and Defining Next Steps

Complete the following statements and questions based on information gathered in the Needs Assessment.

4-1. What appears to be the most critical gap to be filled or problem to be solved?

4-2. What are the four most important outcomes we are trying to achieve from a new CbPC service? Check those that apply in the list below, and then rank them.

___ Continuity of patient care across the system

___ Increase opportunities for patients to receive palliative care services in the community

___ Keep patients at home

___ Keep patients in a SNF

___ Reduce/prevent hospital admissions/re-admissions

___ Reduce inpatient mortality

___ Reduce ED preventable visits

___ Improve patient satisfaction/HCAP scores

___ Increase referrals to palliative care

___ Increase referrals to hospice

___ Achieve longer hospice length of stay prior to death

___ Improve health system/hospital/hospice/home health/practice profit margin

___ Improve market share of selected disease categories

___ Improve public perception of our health system/hospital/clinic/SNF/hospice/home health services

___ Improve health care provider perception of our health system/hospital/clinic/SNF/hospice/home health services

___ Improve collaborative agreements with payers

___ Other: ___________________

4-3. What patient population(s) are we primarily hoping to serve? What outcomes do we want? Check those populations that apply in the list below, and rank them.

|Patient population description |If |Rank by Priority|What is one desired outcome for this group? |

| |Applies | | |

|Post-acute discharge patients who have received inpatient palliative care | | | |

|consults | | | |

|Complex/chronic disease patients | | | |

|Patients with specific diagnosis(es): | | | |

| Heart disease/Heart failure | | | |

| Cancer | | | |

| Lung disease/COPD | | | |

| Chronic/End-stage renal disease | | | |

| Chronic pain: cancer | | | |

| Chronic pain: non-cancer | | | |

| Dementia: Alzheimer, Lewey Body, etc. | | | |

| Other neurological conditions: Stroke, | | | |

|Amyotrophic Lateral Sclerosis, Multiple | | | |

|Sclerosis, Muscular Dystrophy, Parkinson’s | | | |

| Blood disorders: Sickle Cell, Hemophilia, | | | |

|Anemias | | | |

| HIV/AIDS | | | |

| Liver disease: Hepatitis B-D, Cirrhosis | | | |

| Other: | | | |

|Post-cancer treatment patients: survivorship issue | | | |

|Frail elderly/patients with functional decline | | | |

|Patients with advanced illness who: | | | |

| Are too well for home care and not sick | | | |

|enough for hospice | | | |

| Are not ready for, or decline hospice care | | | |

| Prefer to receive care at home in order to stay | | | |

|at home | | | |

| Need to receive care at home due to illness | | | |

|or geography | | | |

| Are sent to rehabilitation for treatment but | | | |

|who will not get home | | | |

| Reside in a SNF or other long term care settings | | | |

| Other: | | | |

4-4. Internal Factors Impacting Readiness

a. Based on information gathered in the Needs Assessment, estimate how ready our institution is to launch CbPC services by rating the following internal factors. Use a scale of 1 - 5 in which 1 = not ready and 5 = very ready.

|Mission Alignment |1 |2 |3 |4 |5 |Don’t Know |

|Our administrative leaders support and promote palliative care program development. | | | | | | |

|We have preliminary indications that there is financial support for CbPC services. | | | | | | |

|Patient Care Culture or Infrastructure | | | | | | |

|We are experienced in the delivery of specialty palliative care in hospital settings. | | | | | | |

|We are experienced in the delivery of specialty palliative care in community settings. | | | | | | |

|We have expertise in palliative care program development. | | | | | | |

|We have reliable, successful ways of transitioning patients with progressive chronic or seriously illness across different venues of care, | | | | | | |

|including accurately and consistently communicating patient care preferences, values, spiritual, emotional and relationship needs, as well as | | | | | | |

|treatment decisions. | | | | | | |

|Community Partnership Experience | | | | | | |

|We have formal and informal partnerships in place with community organizations to meet the support needs of patients and family caregivers. | | | | | | |

|We have routine communication with community spiritual care providers. | | | | | | |

|Tools, Training, and Support | | | | | | |

|We have supports for advance care planning. | | | | | | |

b. If there are serious organizational barriers to developing CbPC services, what would need to change to help jump-start program development?

4-5. External Factors Impacting Readiness

a. From information gathered in the Needs Assessment, how will external or market factors influence our readiness to develop CbPC services?

|External Factor |+ Positive Impact ? |- Negative Impact ? |Describe the Impact |

|Payment or payer policies | | | |

|State regulations and licensing | | | |

|Federal regulation and licensing | | | |

|Community provider relationships | | | |

|Other market factors (e.g. highly competitive market or | | | |

|collaborative market) | | | |

b. If there are serious external barriers to developing CbPC services, what would need to change to help support the development of the program?

4-6. Based on the information gathered in the Needs Assessment, what conclusions can be drawn regarding development of CbPC services at this time?

4-7. On a scale of 1 - 5, with 1 = lowest and 5 = highest, how do we rate the following?

|Our motivation for developing CbPC is well founded and easy to articulate. | |

|Our organization’s culture and operations appear ready to launch CbPC services. | |

|We are able to clearly identify the patient population we hope to serve. | |

|We have the capacity to provide CbPC services in ways that address the demographics of patients in our area. | |

|Data on utilization indicates a need for CbPC services. | |

|The inventory of service providers indicates the need for CbPC services. | |

|Our synthesis of information gathered from stakeholders in our organization and in the community, including patients/families, indicates that developing CbPC services will be | |

|beneficial in meeting stakeholder needs. | |

|A stakeholder (i.e. payer, ACO, health system, or other stakeholder) is prepared to invest resources necessary to launch and sustain CbPC services. | |

|External factors influencing our readiness to launch CbPC services are generally positive. | |

[pic] DECISION POINT

Based on information synthesized to this point, do we wish to continue with plans to develop a CbPC program at this time?

• If YES, Continue to complete the tool.

• If NO, Determine if there is a preferable course of action to meet our needs and those of our stakeholders.

4-8. Based on the information gathered in the Needs Assessment, what type of CbPC services are we contemplating starting? Check all that apply.

← Office-Based program:

← A disease-specific outpatient specialty palliative care clinic

← A stand-alone specialty palliative care clinic

← A specialty palliative care program embedded in an clinician’s office or hospital outpatient clinic

← Other office-based: ________ (Please specify)

← Home-Based program:

← A home-based specialty palliative care program provided as an outgrowth of our hospital program

← A home-based specialty palliative care program provided as a separate business line in our home health agency

← A home-based specialty palliative care program provided as a separate business line in our hospice agency

← A home-based specialty palliative care program provided as a separate business line in a partnering hospice or home health organization

← A home-based specialty palliative care program provided by a community collaborative

← Other home-based program: _________________ (Please specify)

← Skilled Nursing Facilities (SNF) program:

← A specialty palliative care program for patients in a SNF provided as an outgrowth of our hospital program

← A specialty palliative care program for patients in a SNF provided as a separate service line in our home health agency

← A specialty palliative care program for patients in a SNF provided as a separate service line in our hospice agency or other affiliated hospice agencies

← A specialty palliative care program for patients in a SNF provided by a community collaborative

← Other SNF program: _______________ (Please specify)

← Other: _______________________________________

4-9. Outline Next Steps in Planning CbPC Services

Complete the following to outline the next steps in developing CbPC services:

a. Draft a preliminary mission statement for our proposed new service.

b. List two-three long-term and two-three short-term goals for the proposed new service.

c. Compile a list of individuals to be included in a workgroup for the next phase of planning for the CbPC services.

d. What other information or resources are needed to begin the next phase of planning?

e. What organizations/resources/patient or family groups could provide useful information to planning the proposed services?

f. What organizations should be contacted prior any final decisions about new palliative care services?

g. Is organizational approval needed to move to the next step of planning? If so, by whom? Requiring what documentation or presentation?

YOU HAVE NOW COMPLETED THE CAPC COMMUNITY-BASED NEEDS ASSESSMENT AND DECISION-MAKING TOOL. INFORMATION FROM THIS TOOL CREATES THE FOUNDATION OF YOUR CBPC SERVICE DESIGN.

................
................

In order to avoid copyright disputes, this page is only a partial summary.

Google Online Preview   Download