2.1.1 Understanding the frail elder’s situation
The foundation of the care planning process lies in understanding the elderly person’s situation well enough to build a practical and customized plan. Sometimes, a short-term plan has to spring from partial information, as when a person is brought to the emergency room without past records or a suitable informant. Often, the clinical team providing services has to balance the elderly person’s interests in maintaining some zones of privacy and control with the likely importance of information gaps. But most often, the service providers simply do not ask about much of anything beyond issues of immediate importance in their own field of expertise. That is how elderly people who cannot climb stairs after hospital discharge are left at the curb by taxis, unable to get into their homes, or how elders who cannot cook or get food return to the hospital with dehydration after a few days at home. And that is how the elderly person and the family are left frustrated that no one has leveled with them as to how the situation is likely to evolve, while the elder and family make plans that do not work out because their expert advisors are not being accurate or helpful.
What domains are important for the clinical participants in the care team to understand in order to help the elderly person and family build a good care plan?
- Capacity of the elderly person to understand the situation and make his or her own decisions, and suitability and availability of an appropriate surrogate when needed (e.g., a person designated in a durable power of attorney or a close family member)
- Medical status, current treatments, and the elderly person’s likely course with each of various potentially attractive treatment and support options
- Functional status (e.g., Instrumental Activities of Daily Living (IADLs) and Activities of Daily Living (ADLs) and likely future function with the various options
- Financial and other resources needed for various plans of care and their availability
- Current living arrangements and how well they are working, including safety, affordability, and social interaction
- Family/friend relationships that are important to the person or that might open options
- Access to appropriate food and a way to prepare and consume it
- Transportation, suitable for existing and likely future disabilities, including reliability and affordability
- Caregiver(s) identities, contact information, responsibilities, willingness, capabilities, and needs
- The language, culture, and personal stories that are meaningful to this elderly person and family, including religion and spirituality
- Decisions already made or needing to be made concerning future treatment and support, including preferences about the course near death (advance care planning),
- What matters most to the frail elder (and family): goals, preferences, and values
Much of this information can be obtained on a written survey that the elderly person or a knowledgeable caregiver can complete on their own time. Some information can come from medical or service provider records. However, often some of the important elements of the current situation requires skilled interviewing of and conversation with the elderly person and family. The inquiry usually is most productive when shaped by predictions of the likely future courses by the physician and the care team.
Many tools have arisen for establishing the baseline assessment, including the OASIS record required of Medicare home health providers and the MDS record required of all nursing home providers., Some states have fielded their own forms as part of waiver programs, such as the MNChoice on-line instrument for Minnesota. The new IMPACT statute will require standardization of a health assessment done by any skilled nursing facility, home health agency, inpatient rehabilitation facility, or long-term acute care hospital that serves a Medicare patient in the 90-day period after hospitalization. Taking full effect by 2019, assessments required by IMPACT could follow the model of the CARE instrument, which serves as the framework for MDS (nursing homes) and OASIS (home care). These standard data collection tools will be helpful in comparing outcomes and communicating among service providers. Supplementary information in narrative form will fill in a more complete understanding of the person’s situation, his or her hopes and fears, and the likely outcomes.
One key component of good care planning is to assure that the relevant people who make up the care team can come to understand the situation and generate the plan. First among these people is the elder (to the degree he or she is capable), the family (if available), and anyone else important to decision-making and implementation of the plan from the elder’s perspective. These key people are essential to the team and no plan can really go forward without their agreement. Current parlance is “patient-centered care plan,” but that phrase does not put the elder in a strong position. One might instead phrase the product as an “elder-driven care plan.”
Ordinarily, a physician or nurse practitioner needs to be on the team in order to provide prognostic information and to offer medical diagnoses and treatments. Usually, the team needs someone with skills in creatively matching needs with services and someone to help frail elders and families to feel confident and capable in managing everyday issues such as medications, appointments, personal care, nutrition, and engagement with health care and other service providers. People with other special skills may need to be on the team for a particular elderly person: therapists to address particular rehabilitation possibilities, a consulting pharmacist to guide medication management, a mental health practitioner to help with serious behavior or mood problems, a wound care nurse to address a surgical or pressure wound, and so on. Usually, people who merely deliver something to the home are included in the plan but not on the team that develops the plan. Indeed, they usually do not have access to the plan. That can be an unfortunate omission. A person who delivers meals or oxygen, for example, can be a key observer to detect early signs that things are not going well. Their input could be part of the planning. Obviously, some situations require language translators, multiple conversations to assure understanding, awareness of and enhancement of health literacy, affirmative steps to overcome perceived or actual biases, and other elements of any complicated human undertaking.
Sometimes, the team is ongoing and at least the core participants, other than the elder and family, work together often, addressing multiple frail elderly people and their plans. Sometimes, instead, the team forms around a particular frail elder’s challenges. Often, a few people are frequently involved and know one another well, and others are brought in when needed.
Teamwork is challenging, and teams ordinarily need training to be optimally effective. TeamSTEPPS is one popular and evidence-based training program. The Geriatric Interdisciplinary Team Training from the Hartford Institute for Geriatric Nursing is another. At the least, the service provider participants need to be able to communicate effectively with elders and family members, to enable all team members (including the elder and family members) to participate, to bring reliable information to bear, to prioritize issues, to negotiate decisions, to take responsibility, and to document the plan. Following up to learn from implementation of care plans marks an unusually effective learning organization, since most care teams do little follow up or improvement activity.
 (The Commission on Law and Aging, American Bar Association 2011)
 (Centers for Medicare and Medicaid Services, Outcome and Assessment Information Set (OASIS) 2012)
 (Centers for Medicare and Medicaid Services, MDS 3.0 RAI Manual 2016)
 (Minnesota Department of Human Services 2016)
 (Improving Medicare Post-Acute Transformation Act of 2014, Public Law 113-185 2014)
 (Centers for Medicare and Medicaid Services, CARE Item Set and B-CARE 2015)
 (Care Transitions Intervention n.d.)
 (Agency for Healthcare Research and Quality, TeamSTEPPS®: Strategies and Tools to Enhance Performance and Patient Safety n.d.)
 (Hartford Institute for Geriatric Nursing 2016)