Developing a Life Care Plan

Debra E. Berens and Roger O. Weed

BACKGROUND

• Definition: “A life care plan is a dynamic document based upon published standards of practice, comprehensive assessment, data analysis and research, which provides an organized concise plan for current and future needs with associated costs, for individuals who have experienced catastrophic injury or have chronic health care needs” [1].

• Use: Identification of lifelong anticipated care for patients/clients who will not fully recover (i.e., have a permanent disability).

• Historical relevance: The term “life care plan” was introduced into the legal literature in 1981 and came to be recognized as a valuable tool within the rehabilitation profession that identifies and projects the effects of catastrophic injury on an individual’s future [1,2].

• Includes expected short- and long-term or lifelong needs and costs of medical care; residential placement (facility and in-home); transportation; home/architectural modifications; medical and nonmedical supplies, equipment, and adaptive devices; physical, occupational, speech, recreational, and other therapies; medications; and other needs as related to, or a result of, the traumatic brain injury (TBI).

• Routine healthcare needs/costs typically are not included, as the need or service would have occurred independent of the brain injury. Similarly, preexisting conditions typically are not included unless the brain injury exacerbated the condition or had another concomitant effect.

• Although quality of life considerations have been relevant for many healthcare related professions, the life care planning process has only recently addressed this topic [3].

DIAGNOSIS: FOR WHOM IS A LIFE CARE PLAN APPROPRIATE?

• Life care plans for individuals with TBI may be generated for the following situations [2,4–9]:

Hospital or rehabilitation facility discharge planning

Medical-legal cases (e.g., personal injury litigation, medical malpractice litigation, federal litigation, contract law/wrongful adoption, etc.)

Adoption of special needs children

Elder care planning

Workers’ compensation claims

FELA (Federal Employees Liability Act) claims

Managed care health plans and insurance reserve-setting

Trust-funded care for people with disabilities (includes special needs trusts and family funded trusts)

Medicare set-asides

Vaccine injury fund cases

Family consulting for lifetime care needs

Wounded warriors or veterans with injuries

MANAGEMENT: HOW IS A LIFE CARE PLAN GENERATED?

Elements of the Life Care Plan

These include the following:

• Projected evaluations: nonphysician or allied health evaluations that will occur on a periodic basis. For example, evaluations for physical therapy (PT), occupational therapy (OT), Speech-Language Pathology (SLP), cognitive therapy, dietary/nutrition, therapeutic recreation, music therapy, audiology, vision screening, and/or swallow studies.

• Projected therapeutic modalities: ongoing or episodic treatment as well as case management, behavior management, individual/family counseling, and/or other recommended therapeutic modalities.

• Diagnostic testing/educational assessments, for example, neuropsychological, psychological, vocational evaluations, and, for children, developmental and/or psychoeducational testing.

• Wheelchair needs, accessories, and maintenance: type and configuration of recommended wheelchairs, specialty cushions and covers, carry bags, gloves, and yearly maintenance/service requirements.

• Aids for independent function (includes assistive technology and adapted devices).

• Orthotics and prosthetics.

• Home furnishing and accessories.

• Drug and supply needs: prescribed and over-the-counter drugs, and supplies including incontinence, feeding, tracheostomy, wound care, and so on.

• Home care/facility care: living in the least restrictive setting is preferred. However, home care may not be the most cost effective alternative nor the most medically appropriate for the client depending on his/her needs and brain injury sequelae.

For clients recommended to live at home, the level of in-home care should be identified (e.g., skill level of providers, hours per day the providers are needed, shift care vs. hourly care vs. live-in care).

Facility care may be most appropriate for those who have no capability of living at home or whose needs exceed capabilities available in a home environment.

There also may be need for specialty programs such as yearly summer camps.

• Future medical care: typically provided by a physiatrist or neurologist with expertise in brain injury.

• Transportation: adapted driving evaluation and training if client has potential to drive, vehicle modifications, wheelchair modifications, private driver, or public transportation.

• Health and strength maintenance (aka recreation and leisure time activities): home exercise program, adapted sports or recreation activities, and gym or health club membership as an avenue for structured exercise and socialization or community integration.

• Architectural renovations: typically included for clients who are to be cared for at home.

For the military, the Veterans Administration has established certain allowances that are reevaluated each year. See www.benefits.va.gov/homeloans/adaptedhousing.asp for current allowances.

• Potential complications: conditions for which the client with TBI is at higher risk. Included for information only, as no frequency or duration of complications are typically predictable. Costs of complications generally are not included unless they are “expected” and can be quantified.

• Future medical care/surgical intervention or aggressive treatment.

• Orthopedic equipment needs/durable medical equipment.

• Vocational/educational plan.