What is a life care plan? Who uses it?

A life care plan is a dynamic document that outlines medical, therapy, environmental, transportation, equipment and supplies, pharmaceutical, and other needs for a person with a catastrophic or chronic health condition, with all associated costs. It is transparent, meaning that the planner clearly identifies sources of data and costs included, such as from personal contact with treating team members, the patient and family, medical records, and current and proposed vendors. The credible life care planner also clearly describes the methodology used; the planner makes only recommendations for individual plan components within the scope of practice of the planner’s original licensure.

Most, though not all, life care planners work for attorneys involved in litigation; I work for both plaintiff and defense clients to avoid appearance of bias. This article is intended to give a brief overview of some of the many factors I consider in life care planning for an individual with brain injury to clarify future needs and expenses.

How does a nurse life care planner work?

As a certified nurse life care planner (CNLCP), I use my extensive experience as a registered nurse in rehabilitation nursing and case management to guide my assessment of a brain-injured patient. Registered nurse licensure empowers CNLCPs to assess and prescribe for human responses to injury and illness, which privilege we take seriously and is not shared by life care planners with vocational, therapy, or counseling backgrounds. Writing collaborative plans of care with the patient’s best interest foremost is in nursing’s DNA. I develop plans of care for life expectancy based on my personal assessment.

I review all medical records from every provider and speak to the treating physicians and therapists to get a sense of the mechanism of injury, initial treatment, response to treatment, treatment goals, future evaluations, and potential complications. My onsite assessment of the injured person in his environment gives me valuable information to make recommendations for projected needs: equipment and supplies, safety issues, family wishes and support, present and future levels of care, environmental considerations, recreation, dealing with potential complications and accelerated changes with aging, and more. Then I research options, availability, and costs, and write a detailed report, often 40-50 pages, with my findings and recommendations.

While I often get asked if I cut-and-paste my plans, there can be no such thing as a one-size-fits-all life care plan for any individual. This becomes significant when the patient has suffered a head injury because every head injury, more than almost any other, is unique. While I can make reasonably good guesses as to the probable effect of injury to a particular brain area from diagnostic studies like CT scans or fMRI, rehabilitation professionals know that scans alone cannot predict all long-term needs. This makes my life care planner’s expertise in medical conditions, rehabilitation, individual assessment, and planning all the more important.

What do you consider first for brain injury cases?

First: If you’ve seen one brain injury, you’ve seen … one brain injury. Every brain injury is different. We can all recognize the catastrophic brain injury with severe cognitive and motor defects, lack of safety awareness, spasticity, and anger.

However, the teen who sustains a concussion in a minor accident and begins having trouble at school may look and act pretty normal, but his declining grades and behavioral issues maybe more than adolescence. The professional whose business begins to flounder because her executive function is subtly disrupted, the child with intractable headaches that new glasses aren’t fixing, the worker who fell off a ladder whose shoulder was his most obvious injury but whose sleep pattern and normal good nature are disturbingly altered– all of these people have long-term consequences of their brain injury and may need provisions for their care and safety for a lifetime.

In all but the most devastating injuries, improvement is visible during the early post-injury period, progress is measurable, complications are managed, and level of care changes. The injured person may move from critical care to inpatient rehabilitation, outpatient, and then home care.

In my experience, the most difficult ongoing issue families face with brain injury, regardless of its cause, is the profound change in family dynamics due to disability. Loved ones tolerate the inconveniences of dealing with many behavioral aspects of brain injury — confusion, agitation, memory and concentration deficits, irritability, decreased safety awareness and judgment, impulsivity, and others — feeling that these and any associated physical limitations will resolve with time.

During the acute phase, hopes are high. However, improvement after head injury usually follows a predictable pattern. The rate of functional gain slows at about one year, tapers, and finally plateaus at about three years post injury. At that point, for the most part, what you see is what you get. That’s when it’s a good idea to get a comprehensive evaluation panel, including neuropsychiatric examination, nursing, therapies, and social work, to establish a functional baseline. This will help the family begin to prepare for their changed future, their “new normal.”

Family roles and coping

The injured person may not be able to resume the role once held in the family. The ability to work effectively at a previous occupation, or even at all, may be gone or impaired. The normal noise of family life may be intolerable. Loss of ability to smell odors, such as smoke or gas leak, may have serious implications for safety; inability to identify spoiled food can cause problems in the kitchen. Driving may be out of the question due to problems with attention, visual, or cognition. The individual may not be safe to leave alone at home or may wander.

Frustrations mount as expectations are shattered and the future is no longer what it used to be. The life care plan should anticipate this plateau and make provisions for both individual and family counseling, as it assumes a bigger role as both patient and family come to grips with that new normal. The life care plan must be flexible enough to accommodate complications and unexpected developments for this family.

Dealing with associated medical issues

Associated other disabilities, such as weakness or paralysis, spasticity, or loss of balance require considerations for mobility aids, special therapies, and home modifications for safety and access. There must be provisions for investigating the cause of any significant change in behavior or decrease in function at any time, as this could be due to increased intracranial pressure, progressive brain atrophy (shrinking), or stroke. Sometimes regularly-scheduled screening diagnostic imaging can alert the care team to expect changes before they occur. I include provisions for these in the plan.

Everyone needs routine primary medical care. This is sometimes overlooked in life care plans. However, brain-injured people may be at risk for complications that may not affect others, so identifying a primary care provider with expertise in brain injury is important. Every patient should have regular medical follow-up appropriate to chronological age, such as physical examinations, basic lab work and specific tests for medication side effects on the liver and kidneys, EKG, and immunizations. Many physiatrists (rehabilitation specialist physicians) can fulfill this role at regular physiatry follow-up visits. Specialty care, such as periodic evaluations by speech/language, physical, or occupational therapy, may be indicated depending on the baseline evaluation; if so, I identify local providers.

Medications can be very expensive. Although all may not be related to the brain injury, I research costs and suppliers for all prescribed and over-the-counter medications in use or reasonably certain to be needed in the future.

Equipment

Durable medical equipment (DME) can be costly, and many plans over- or underestimate replacement and maintenance. Someone who is wheelchair-dependent and less physically active than before injury may gain weight; over time that may mean that bracing, splints, wheelchair, clothing, and even a bed will need replacement more often than anticipated. If a person is violent or impulsive and breaks items, this will incur extra costs. Most DME needs replacement at scheduled intervals; from one year for a specialized wheelchair cushion to 5-7 years for a tub transfer bench or feeding tube pump to 10-15 years for a bed. Some providers offer service plans for maintenance; I can evaluate these for cost-effectiveness. I contact vendors in the patient’s area, reputable online vendors, and any current vendors providing equipment to compare costs and contracts before making recommendations to a client.

Home care or residential placement?

Families often have to make a hard decision: keep the person in the family home with support services or seek admission to a residential care facility? Home care involves hiring help for the family (home nursing, sitters, therapists); architectural modifications for kitchen, bathroom, mobility, and access safety and security; obtaining and storing medications, equipment, and supplies; provisions for transportation to medical appointments; arranging quality of life enrichment activities; and respite care. These goods and services can be very costly; an average bathroom modification for safe access by patient and caregiver can easily top $25,000, if it can be done at all after consultation with a qualified NARI or CAPS remodeling professional. I contact contractors and several real estate agents in the area for information on accessible housing to guide recommendations on remodeling vs. new housing.

Most of the equipment, medication, care, therapies, and services needed for home care and support are included in the rate for residential care. Surprisingly, good residential care in a dedicated brain injury facility is generally less expensive than home care over the long term, depending on a number of factors. I determine patient and family preferences and investigate several choices, if available, that would meet the requirements of the individual. If transportation to and from the facility for visits home or for family visits there would be needed, I include those costs in the plan.

Progression with aging

Finally, I consider needs that are expected to change with aging. Some changes may be seen earlier in life; brain injury predisposes to premature effects of aging on the brain, such as dementia. A history of prior brain injury is the biggest risk factor for sustaining a second one; falls increase this risk, as well as risk for fractures. Physical limitations such as arthritis, spasticity, or altered sensation may become more severe. My life care plan will make provisions for possible complications requiring increasing levels of care with aging, from occasional help at home to residential placement. The older adult with brain injury may require a specialized facility. I will identify careful follow-up and alternatives well in advance, critical to planning for this possibility because wait lists can be very long.

When you have a case involving a brain injury, you want to be sure you are getting the full picture. This very short description may leave you with further questions. Call Howland Health Consulting at 866-604-9055 or use our online contact form NOW to take advantage of our free quick-look initial consultation and our discount for new clients.