Life Care Planning
The Principle of Consistency
The Merriam-Webster Dictionary defines consistency as “(a) an agreement or harmony of parts or features to one another or a whole; (b) ability to be asserted together without contradiction; (c) harmony or conduct of practice with profession.”
Each of these subtle variations of the meaning of “consistency” are appropriate definitions relative to the methodology of life care planning. Without a consistent approach to gathering patient-specific data, analyzing it, and organizing it into a sensible format, it is not likely that the plan will be effectively implemented.
The most respected life care planners follow a consistent approach to plan development with each and every case; their plans are based upon the demonstrated needs of each individual for whom a plan is created. Life care plans are based upon the needs of an individual, not the forecasted financial resources available for implementation.
To these planners, it does not matter whether they are hired by plaintiff or defense in a litigated case, by an insurance company to assist with case management and reserve setting, or by any other party to develop a life care plan. The developed plan will be tailored to the actual needs of the individual as dictated by the onset of a disability. Variations between individuals with similar disabilities will occur because of different variables being considered, but the methodology for analysis should remain consistent.
Consistency in Litigation
When involved in forensic cases, care planners should not develop “luxury” plans that include the most expensive options possible when hired by a plaintiff, yet search for ways to provide the barest minimum of services regardless of individual needs when hired by an insurance company. If this sort of a pattern is detected, one’s professional credibility and ethical conduct will eventually be called into question.
In some catastrophic injury cases, the needs of the individual may very well exceed the financial resources available to meet those needs. When this occurs, the discrepancy between the needs and the available funds must be quantified and the life care planner must educate those involved as to the consequences of not meeting the projected needs of the patient. Beyond that, the planner may convene members of the planning and implementation teams (including the patient and family, of course) and consider alternative resources, community programs, and creative resolutions to the issues of concern.
The Basic Tenets of Life Care Planning
The following principles constitute the guiding philosophies of life care planning:
1. First and foremost, life care planners are rehabilitation professionals and educators. The role of the life care planner is that of educator, not advocate. When developing a plan, one must maintain objectivity and base recommendations upon research literature, the opinions of consulting team members (physicians, therapists, etc.), and patient-specific data. The responsibility of the life care planner is to set forth attainable rehabilitation goals and to assure that all parties involved in the process understand why specific items are included, how/when services should be provided, and how the plan is best implemented.
2. All plan recommendations should clearly relate to patient-specific evaluation data. It is essential that each recommendation is carefully tied back to the data collected in the clinical interview and history taken with the patient and family, as well as in the review of all medical/health related professional records. The basis for each item citation should be clear to others who review the life care plan; no one should be left to wonder why specific recommendations were made.
3. Assume the probability of success of recommendations. It is inappropriate to make recommendations in a plan, then to proceed as though those recommendations were not going to be successful. If the recommendations are worthy of inclusion, it is appropriate to assume the probability of their success. The plan should be built upon successful outcomes.
4. Life care plans are designed to answer questions, not raise them. The life care plan should be self-explanatory. If it is not, revisions should be made so that it easily understood by all. Develop a format that is natural to your writing style, but also reader-friendly. Use explanations in the comment box and footnote sections wherever necessary. Have a team member review the plan and objectively comment on the document’s readability. This will improve communications and reduce the time spent in deposition, if the plan will be scrutinized within the forensic setting. It is even more critical when the plan is referred to within a general case management setting. Clarity of communication with the patient, family, and interested third parties is critical so that recommendations are not misinterpreted or misapplied.
5. Life care plans specify provisions throughout life expectancy and cannot depend on any one individual, service, or supplier for fulfilling plan recommendations. Always use at least three sources for the major cost items in the plan. Do not use negotiated rates because there is no guarantee that the cost will remain constant if the business/supplier should change hands; life care planners should not get into the habit of seeking discounted rates for repeat referrals. During the phase of plan development, costs should reflect real values of goods and services found within the patient’s local market. Also, eliminate the outliers from the market analysis so that unrealistically low/high rates do not misrepresent the actual cost of an item.
6. Recommendations must consider disability, individual, family, and regional factors. Make sure the services you are recommending are available in the patient’s geographical location; if not, provide transportation expenses or develop a program using area resources. For example, if the patient lives in a rural setting with few paved sidewalks, the wheelchair you recommend should be durable within that environment. Always consider the individual variables that make the plan a custom fit to this patient and family. There are no generic life care plans!
7. Attend to details. A clearly written, well-documented life care plan and a professional image are significant steps toward credibility. Strive to maintain professionalism and to produce a professional product. Carefully proof all work for careless mathematical, grammatical, or terminology errors. Evaluate the narrative report, life care plan, and all correspondence for internal consistency and make certain that the recommendations progress in a logical sequence. When reviewing your work for submission to the referral source, patient, and family, remember that they are not likely to be familiar with the terminology, acronyms, medical codes, abbreviations, and nomenclature taken for granted by the planner. The plan is a tool of communication, not confusion!
8. Recommendations are proactive, not reactive. Life care plans should be developed and implemented in a preventative manner that minimizes the frequency of occurrence, severity, and duration of complications. The recommendations must be clearly related to evaluation data identifying specific individual needs, and must be expected to benefit the individual.
If an individual is not expected to benefit from a given service or piece of equipment, that recommendation should not be made. On the other hand, if a recommendation is expected to benefit the individual, the expected benefit should be considered in developing the rest of the plan.
For example, if an individual with paraplegia but no history of decubiti is provided appropriate wheelchair cushioning and training regarding pressure release, skin inspection, and other methods to prevent the development of decubiti, that individual’s life care plan should not include provisions for four surgeries per year to treat decubiti. The assumption being made is that the best care and recommendations will not work and such complications will occur unabated regardless of preventative intervention. It suggests that complications can be accurately predicted despite the lack of a statistical basis for that assumption. It also fails to consider the impact such an assumption concerning ongoing complications may have on life expectancy.
9. Recognize the benefits of maximizing patient potential. In addition to individual quality of life benefits, financial benefits may also result from maximizing rehabilitation outcomes through the provision of timely and appropriate services.
Consider the following example: Imagine the costs over a lifetime for two different 24-year-old individuals with C5-6 spinal cord injuries. One can turn himself at night or can tolerate six hours without being turned. The other cannot. The difference in expected lifetime costs reduced to present value for these two individuals is over two million dollars. This difference is based upon the patients’ functional limitations and the degree to which their levels of independence impact staffing requirements for support care.
10. Life care planning is multidimensional. Life care planning is multidimensional, with each recommendation potentially affecting other recommendations and elements of the plan. Driven by a specific functional limitation or impairment, all items cited within a plan will impact other recommendations both directly and indirectly.
For example, multiple disabilities and multiple service providers might dictate similar recommendations, resulting in service overlaps or duplications. Consider the effects of a change from intermittent catheterization every four to six hours to a suprapubic catheterization program for a C5 tetraplegic who is not independent in self-catheterization.
With intermittent catheterization, the patient requires:
- An LPN to perform the procedure
- Visiting nurses are impractical, because the program would require four to six visits every twenty-four hours
- The cost of visiting nurses would preclude this form of care from being a realistic, fiscally-responsible option
- Two twelve-hour shifts ,or three eight-hour shifts, of skilled nursing care are necessary
If a change to a suprapubic catheter occurs, the skilled nursing care can be accomplished with nursing visits for the bowel program every other day, at which time they can deal with the flushing of the suprapubic tube and the once per month tube change.
In addition to the modifications within the home care element of the plan, changes would also be required in supplies, routine and invasive medical care, and possibly within the medication element of the plan.
11. Consider the entire cost of each recommendation. Not only life care plan developers, but also case managers implementing these plans need to consider all of the cost factors associated with a given service option or piece of equipment.
For equipment, the overall cost must take into account the cost of maintenance and the necessary frequency of replacement. This is particularly true when calculating the cumulative cost of assistive technology and equipment that makes use of consumable supplies.
Thomas and Kitchen (1996) compared the costs of hiring a personal care attendant through an agency versus through private hire. When the total cost (including employer social security and Medicare matches, state unemployment taxes, fringe benefits, payroll expenses, background checks, appropriate supervision, etc.) of a private hire are considered, the appeal of hiring through an agency increases.
12. The costs provided in a life care plan do not include two important categories: potential complications and future technology. The costs associated with these areas cannot be accurately predicted. The degree to which complications will be experienced or future technology developed to meet a given individual’s needs cannot be known. Therefore, these costs are not included in the final cost analysis of life care plans. However, it is important for life care planners and case managers to inform decision-makers that there is potential for development of complications, as well as invention of future technology, which could have an impact even though they have not been included in the life care plan projections.
Within the narrative report or the life care plan, the planners should clearly state that the issues of complications and technological advancement were not ignored, but that no valid method of calculating the costs/needs associated with either area exists. Life care planners must be certain to educate others and indicate that recommendations are based upon what has been determined to occur within “reasonable rehabilitation probability.” Events that lie beyond the realm of reasonable rehabilitation probability simply cannot be accurately evaluated.
13. Consider the psychological effects of the injury or disability. Psychological factors have a significant impact on the quality of life for individuals with catastrophic injuries. Making the individual a part of the decision-making team early in the process, and at what level they can participate, is critical to the success of plan implementation. Having choices and exercising control over one’s environment are especially important for individuals with catastrophic injuries that interfere with mobility and physical function.
For example, installation of an environmental control unit is a psychological intervention, an aid for independent functioning, and a safety precaution. If a tetraplegic individual has a personal care attendant available to turn the channels on a television set or to dial a telephone, for example, a naive individual might question the need for a voice-activated system to operate those items. However, the psychological importance of restoring as much choice and independent control over one’s environment as possible should not be underestimated.
Psychological interventions should take into consideration the current demonstrated needs of the individual and his or her family, as well as future adjustments anticipated over the life span. For an adult who is injured, adjustments are expected during critical life phases, such as marriage, beginning a family, and retirement. For children with disabilities, appropriate short-term psychological goals should be established for different developmental stages.
14. Disability interacts with age to produce additional concerns. Not only psychological aspects, but also physical aspects of function, will normally vary with age. When disability interacts with the aging process, specific body parts are known to wear out faster than they would for an individual without a disability.
For example, an individual who uses a manual wheelchair during young adulthood may be expected to require a power wheelchair later in life. The patient’s shoulders, which were not designed to be weight bearing joints, will lose function over time faster than would be experienced by an individual who does not use a wheelchair. Aging with disability is a critical part of the life care planning process. The plan does not remain static throughout the life span of the patient, but must anticipate the items and services made necessary by the effects of age and disability. An excellent example of the research done in this area is discussed in Aging With Spinal Cord Injury by Whiteneck, Charlifue, and Gerhart (1993).
The Elements of the Life Care Plan
Upon completion, each life care plan should reflect the unique needs of the patient. The established methodology allows planners to consistently follow a specific sequence of tasks throughout the development process while, at the same time, customizing each plan according to the realities of a patient’s circumstance.
One of the most critical tasks to be completed during the plan development process is the clinical interview and history with the patient and at least one member of their family. This may not be possible in all situations (i.e., litigated cases), but should be attempted in every case. Patients and family members provide the planner with a wealth of information which cannot be conveyed from a review of written records, and this information helps the planner to more fully appreciate the functional, emotional, psychological, and vocational impact of the injury or illness.
Prior to conducting the clinical interview, however, it is suggested that life care planners complete a thorough review of all patient records. Not only will this prepare the planner for the interview, but it provides an opportunity to clarify errors or confusion within the record.
Review of Records
Reviewing patient records can be a daunting task if the life care planner has not developed a systematic data management system. In order to most effectively build a patient profile, the planner requests all medical, psychological, rehabilitation, educational (for children), and vocational (if applicable) records.
A comprehensive review of the records serves many purposes:
- All medical and rehabilitation aspects of each case must be identified.
- The planner may determine whether additional assessment is necessary in order to distinguish all patient needs.
- The planner must be able to communicate the intricacies of each case with the treatment and consultation team.
- If not clearly stated within the record, specific questions may need to be asked of specialists regarding future interventions, evaluations, and/or recommended therapies.
- The planner is better able to understand the experiences of the patient and may approach delicate personal topics with greater sensitivity.
Medical and Case Management Foundations
Life care planning methodology dictates, and forensic practice requires, that both medical and case management foundations are required in the development of each plan. This is one reason why professionals from both of these areas are well-suited to pursue board certification in life care planning; each contributes an essential component within the plan.
Medical foundations are required for any recommendations that are exclusively medical in nature. For example, invasive procedures, diagnostic testing, laboratory testing, prescription medications, surgical interventions, and similar items require physician support. The treating, consulting, or specialized physician must substantiate that the recommendations are medically sound. Case managers are not qualified to make medical recommendations.
Case management foundations are required for all items which fall outside of the medical arena. This is not to say, however, that life care planners do not need to be fluent in medical terminology and all related information. Planners are responsible for basing all rehabilitation, therapeutic, support care, vocational, equipment, supply, and other needs upon the patient’s medical diagnosis, substantiating medical data, and resulting limitations. Physicians are not qualified to make long-term rehabilitation recommendations.
Consider this example: Physicians provide comprehensive data regarding the medial aspects of the patient’s condition. Case managers then use this data to identify the appropriate level of support care as determined by the home health regulations and staffing guidelines.
Of course, this process may be accomplished in conjunction with the physician, but it is the responsibility of the life care planner to know the regulations within the patient’s state of residence. Physicians are generally not familiar with the issues surrounding patient care beyond the acute/sub-acute phases of rehabilitation. Their expertise is concentrated upon immediate treatment protocols necessary to stabilize and improve a patient’s physical condition.
Needs-Based Recommendations
Though the elements of life care plans are generally consistent when compared to one another, the content within each area is individualized to the needs of the patient and family. In addition to the items themselves, each associated cost, replacement schedule, dates of implementation and suspension, and the name of the professional making the recommendation are clearly identified.
Recall from the discussion of methodology that potential complications are not to be included within the text of the life care plan. Instead, complications are addressed within a separate element of the plan and provided only for the purposes of educating those involved in the case. Complications cannot be predicted nor budgeted for within the plan. While alerting the patient and others to the potential for complicating events, the planner has an opportunity to reiterate another of the basic principles of life care planning: A competently developed plan, if complied with, will minimize complications.
Elements of the Life Care Plan
Depending upon the specific needs of the patient, the following areas are to be addressed within the life care plan:
- Projected evaluations
- Projected therapeutic modalities
- Diagnostic testing and educational assessments
- Wheelchair needs
- Wheelchair accessories and maintenance
- Orthopedic equipment needs
- Orthotic or prosthetic requirements
- Home furnishings and accessories
- Aids for independent function
- Medication
- Supply needs
- Home care or facility-based care needs
- Projected routine future medical care
- Projected surgical treatment or other aggressive medical care
- Transportation needs
- Architectural renovations
- Leisure or recreational equipment
Elements of the Life Care Plan Defined and Discussed
Projected evaluations: The first page of the life care plan refers to health-related professional evaluations. These may include, but are not limited to, evaluations by physical therapy, occupational therapy, recreational therapy, psychology, neuropsychology, developmental psychology, behavioral psychology, recreational therapy, speech therapy, vocational rehabilitation, or a range of other specializations. The important thing to remember is that physician evaluations are included on either the routine future medical care page or, in the case of aggressive medical intervention or surgical procedures, the aggressive medical care page. Evaluations are separated from the actual provision of therapies displayed on the next page because they are scheduled separately and often an individual will be evaluated numerous times without therapies being initiated until certain criteria are met. Even when therapies are ongoing, it is common to periodically step back and perform evaluations to determine the gains that have been made and establish goals for the next stage of therapy. This process also provides an opportunity for the planner to establish phase changes in the exercise program or regime.
Therapeutic modalities: The second page of the plan displays the type, schedule, frequency, and duration of therapies planned for the patient. Remember that therapies, like all recommendations, are needs driven and not dollar driven. For example, it is appropriate to note a home-based physical therapy program even when it is designed by the physical therapist during a once per year evaluation but administered by the paraplegic patient on an independent basis. Even when no dollars are displayed in the cost column, it is appropriate to display what is occurring in self-compliance with appropriate care.
Diagnostic testing/educational needs: This section represents educational testing requirements, special education needs for the pediatric patient, vocational training programs, or even college education programs that are recommended for the patient. These can include programs provided under the Individuals with Disabilities Education Act (IDEA) without charge in the plan or programs requiring extensive costs for tuition, lab fees, books, and supplies.
Wheelchair needs: Depending on the disability, this section can cover a broad range of wheelchair types supplied for a broad range of needs, desires, and interest. The life care planner should become familiar with the basis for wheelchair prescriptions before including recommendations in the plan. The patient’s age, body type, height, and weight can significantly influence chair requirements as can the nature of the disability. The planner should pay particular attention to a cut-off date when ordering specialty chairs. For example, for the wheelchair athlete interested in a sports wheelchair to play in a wheelchair basketball league, the planner should be careful not to continue replacing the sports wheelchair through the patient’s life expectancy.
Wheelchair accessories and maintenance: This page is largely self- explanatory, but a few points are important to keep in mind. Paying attention to small details can help bring credibility to a plan. For example, it is important to start maintenance costs one year after the purchase of the chair and not the same day the chair is purchased. The first year’s costs should be covered by the chair’s warranty. Consider carefully what the patient, based on the disability involved, is most likely to actually use in terms of accessories. Do not simply develop a standard list and apply it to every life care plan.
Orthopedic equipment: This page addresses equipment in the home that supports home-based therapies. For the adult patient, this equipment may include therapy mats, a therapy table, or specialty exercise equipment for use with the wheelchair. For pediatric patients, it may include therapy balls, grasshoppers, positioning bolsters, or a range of other appropriate equipment. Coordinate your recommendations with the physical and occupational therapists as well as with family members and, where appropriate, the patient.
Orthotics and prosthetics: This page addresses any upper or lower extremity splinting needs the patient may have. It is insufficient to only consider what the patient’s existing program already contains. Check with the therapist and treating physicians about future needs before budgeting for these items.
Prosthetics should be carefully planned for the amputee. Talk to the local treatment team and try and check with more than one prosthetist if there are unique aspects to the amputation. A variety of factors can influence the nature of the prosthetic device and the materials used in its construction: the nature of the amputation, the patient’s occupation, the patient’s leisure-time interest, and even the region of the country.
Home furnishings and accessories: A variety of items may be included in this page. The planner’s goal should be to consider furnishings from handheld showers to lift recliners that will improve the quality of life of the patient.
Aids for independent function: The focus of this section is on identifying the aids for independent function that will be most effective and most useful for the individual patient with whom you are working. There are literally thousands of such aids available, but typically only a select number that a specific patient will choose to use on a regular basis. The life care planner must become familiar with the resources for identifying these aides and must educate patients on their availability and function.
Medications: The life care planner can only include the medications outlined by the physicians. Nevertheless, the list must be restricted to medications that will be used on a chronic basis. Acute medications cannot be included simply because there is no basis for determining the frequency or duration of use or even the phases in which they may be used. Thus, there is no way for an economist to cost out their inclusion in the plan.
Supply needs: These include all supplies associated with compliance with good care in relation to the disability. The planner should itemize these supplies in detail and include costs for each item.
Home care/attendant care/facility care: In plans where support care services are necessary, an average of 65% to 75% of the total cost are tied up in this one section of the plan. For this reason, it is extremely important that you document this section carefully. That is not to suggest documentation is not equally necessary in all areas, but it is important to re-emphasize the point here. If you are considering recommending home care, then review local home health regulations. Confer directly with the staff and administrative representatives of these agencies to assess the level of care which can be provided. Consider the options for providing home-based care programs. Look carefully at multiple alternatives for facility-based programs and do not be afraid to think creatively. Consider the patient’s and family’s ideas, goals and interests. Work together as a team.
Routine medical care: The routine medical care page should be completed, in part, with the aid of the treatment team. But if you are a case manager completing the plan, do not be afraid to exercise judgment. In your role as life care planner, you are expected to exercise good judgment. For example, certain medications require routine laboratory studies in follow-up. If the doctors have not specifically noted this, it is still in you purview to budget these laboratory studies in the plan as a standard of care. You are not ordering the test, you are simply providing for the line item in the budget. Failure to do so is an oversight that you should not allow to happen. If you are not comfortable making recommendations involving routine procedures, go back and check with the appropriate physician. You must keep on top of these basic items and work closely with the physicians to complete this section and the aggressive medical portion of the plan.
Aggressive future medical care or surgical intervention: Only the treating physicians or a consulting doctor can complete this portion of the plan. The life care planner is responsible for carefully noting the procedure and, where possible, identifying procedure codes. It is necessary for the planner then to identify and document procedure/surgical costs, hospital costs, anesthesiology costs, or any other related charges.
Transportation needs: Any disability-related adaptations to vehicles should be noted in this section of the plan. This is the appropriate section to include anything from a simple spinner knob placed on a steering wheel for an upper extremity amputee or an adapted van for a wheelchair patient. The important thing to remember is that the life care plan should only include costs made necessary by the onset of a disability. If an individual would have had a vehicle in any case and now is getting an adapted van, than there should be an offset to that cost. Generally, the recommended offset is the average cost of purchasing an automobile in the U.S. One recommended source is the National Automobile Dealer’s Association (NADA), Industry Analysis Division. Currently, the estimated cost of the average new automobile is $26,150 (2002 data), which would be deducted from the price of a van as an offset.
Architectural needs: This section provides for all adaptations to the home made necessary by the disability. Like transportation, it is important not to “double dip” in this area. Remember that most people normally buy homes and automobiles from their earned wages. Therefore, if the case on which you are consulting involves wage loss reimbursement, then the cost of the basic home and automobile has already been covered. The life care plan only budgets for the costs of adaptations made necessary by the onset of the disability. If, in fact, there is no wage loss involved, or if it is insufficient to allow for housing or transportation to meet appropriately adapted needs, then an exception is involved.
Leisure time/recreational needs: It is important to keep in mind that the life care planner is working with the whole patient. This means the planner is involved not only with the physical disability but with the psychology, the vocational interests, and the leisure time/recreational life of the patient.