Core Component #2: Longitudinal, Comprehensive, Elder-driven Care Plans

Life gets complicated when you are old and frail. You are usually living on a fixed, and often fairly thin, income. You worry about whether your savings will last to the end of your life and whether those last days will be awful. You have to deal with losses in your capabilities and in your network of friends and family. You live with the constraints of various physical maladies. For people over 85 years old, 83% have two or more chronic conditions.[23] Most people over age 65 take more than five medications.[24] About one-third of people living past the age of 85 will develop dementia.[25] Many more have confusion or delirium when they have a bout of worsening illness or when taking a new medication. If you arrive at frail old age with attentive family or friends, they are part of the experience and their burdens and issues weigh on you. If you don’t have family or friends, then you are often feeling quite alone and even wronged, without anyone on your side or caring about you. Housing that has served you well for years becomes unsafe or simply too expensive. Even getting food can be daunting. And yet it all has to work, every day, for you to live well—even when something goes wrong or your health and capabilities suffer a decline.

The most missing element in care for frail elders has to be a thoughtful, negotiated care plan. What we usually have instead is a set of diagnoses, medications and treatments that respond to some current symptoms or concerns, and perhaps an uncoordinated assortment of social and supportive services from different sources—none of which reflects a consideration of the priorities and possibilities for this elderly person and his or her family. A good care plan, in contrast, articulates the actions needed in order for the frail elder to live well, with priorities and goals determined by the elderly person and his or her family. The plan is created by the care team, consisting of the most important service providers along with the patient and family. A thorough care plan deals with the more likely and the more problematic contingencies. It is also honest about what the elder and the family can expect in the future and about what choices they really have.

Most medical records don’t even have a space for writing down a care plan or the members of the care team. Most don’t even identify the primary caregiver in the home. Even when care plans exist, key service providers or the elderly person and family often have not participated in formulating them or have access to them when needed. Yet, planning ahead is the heart of good care for living with chronic conditions.

Generating a good care plan is like many other complex planning activities. It goes substantially beyond just reacting to current events or addressing a narrow scope of concerns. Like a comprehensive plan for urban development or for training an athlete, a worthy care plan builds on an honest understanding of the current situation and how it could unfold with various actions and events. The care plan articulates the goals and values of the frail elderly person and the family and crafts a set of actions to achieve the best available outcome, as judged from the perspective of the elderly person and his or her family. Thinking through the most important issues and coming to decisions and plans can enable the frail elder to live well, as he or she (with family) defines “living well.”

In the last few years, many endeavors have underlined the central role of care plans. Some Accountable Care Organizations are beginning to measure care plan development along with Annual Wellness Exams. The 2014 Institute of Medicine (IOM) report on end of life care makes care planning a central concern in the time of living with serious illness ahead of death.[26] Most of the integrated care demonstrations for dual eligible (eligible for both Medicare and Medicaid) beneficiaries in certain states are requiring care planning for complex patients. PACE, skilled nursing facilities (SNFs), and hospice programs already do care planning, though hospices generally focus just on comfort and supportive services and SNFs generally focus on rehabilitation.

More recently, the 2015 CMS Measure Applications Partnership report, “Cross-Cutting Challenges Facing Measurement” identified a number of gaps in the measurement of care plans, emphasizing the need for person-centered care plans created early in the care process, with identified goals, and “social care planning addressing social, practical, and legal needs of patient and caregivers.”[27] The American Geriatrics Society also cited “an individualized, goal-oriented care plan based on the person’s preferences” as an essential element of person-centered care.[28] The 2015 proposed rule for Meaningful Use Stage 3 (governing the requirements for electronic medical records) recommended the inclusion of a certification criterion for care plans that would allow “a user to record, change, access, create and receive care plan information.”[29] In the final regulation for the chronic care management (CCM) code, Medicare required the maintenance of an electronic care plan as one of five capabilities necessary to bill with the CCM codes.[30] A recent Medicare notice of proposed rulemaking for the Requirements for Long-Term Care Facilities adds a new “Comprehensive Person-Centered Care Planning” section, which would require facilities to take the resident’s goals and preferences into consideration in developing the care plan.[31] One unique aspect of the new requirements is the inclusion of the full interdisciplinary team (IDT) in the care planning, including direct care staff such as nurse’s aides. The Care Planning Act of 2015, introduced by Senator Mark Warner and others, would require Medicare to cover advanced illness planning and coordination services for eligible individuals.[32] These services would include “Assisting the individual in defining and articulating goals of care, values, and preferences” and discussing a range of treatment options.

With so many parties championing care planning, the slow uptake is perplexing. Currently, most people will go through their period of frailty without ever having a comprehensive, person-centered care plan. At least for frail elders, improving this situation is critically important and reliable, effective, comprehensive care planning has to be a core achievement of a MediCaring Community.