Key points

Introduction: the anatomic injury determines dysfunction and life care plan design

Life care planning has been established as a methodology for documenting, funding, and orchestrating services, supplies, and opportunities for persons with spinal cord injury (SCI). If implemented prospectively in care coordination, patients with SCI will be most functional, avoid most complications, and achieve their personal potential across their life spans. The International Academy of Life Care Planners has defined a life care plan as a dynamic document based on 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. The patient with spinal cord injury provides a prototype for life care planning because SCI produces quantifiable impairments in sensation and strength along with predictable functional outcomes, and responds to a variety of effective interventions recommended by clinical practice guidelines.

Most functions of the spinal cord as a conduit and relay center for sensory and motor signals are well known and understood. As vertebrates, humans have spinal columns consisting of a stack of weight-bearing vertebral bodies, each representing a body segment. These segments have evolved with a spectrum of functional specializations, such as structures as simple and essential as rib and intercostal muscles for ventilation or as complicated as the upper extremity positions of the hand for fine movements. Spinal cord lesions, therefore, most predictably interrupt function at segments that are injured and segments below them. It is the fragility of the spinal cord and the segmental design of vertebrates that presents the opportunity to systematically examine each dermatome and myotomal segment, thus to determine a spinal cord level. That level is predictive through measurement of multiple domains of outcome of functional independence and burden of care.

SCI disrupts the coordination of other body systems by the nervous system, resulting in various organ dysfunctions. These dysfunctions are systematically addressed in the clinical practice of spinal cord medicine through diagnosis, therapy, rehabilitation, caregiving, and self-care accommodations. These methods have been critically analyzed and formulated into SCI guidelines, and over the last decade a variety of clinical practice guidelines have been developed, based on scientific evidence from clinical studies and consensus of expert clinicians’ opinions.

In 1995, the American Board of Medical Specialties established the subspecialty of spinal cord medicine, a new branch of medical science that has grown to more than 600 board-certified physicians and for which 15 fellowship training programs are available at academic medical centers throughout the United States. The body of knowledge used to treat the clinical condition and disablement from SCI has been assembled into textbooks that have been recently updated. These and other developments have all contributed to the validity of life care plans, and have allowed expert practitioners to deliver prospective care guided by patient-centered life care plans. Life care planning can be a useful tool after SCI, because of the patient’s longevity after injury and the complexity of preventive and supportive care needed following the injury. Efficient and economical care plans can provide a template to enable patients in relationships, work, and community service without compromising patient care needs. Persons with SCI have been the early and ongoing subjects of life care plans that have been proved to be effective for decades. These individuals exemplify the impact of designing these plans to quantify the personal and economic consequences.

SCI is one of the more recognizable and understandable chronic conditions. As a prototype subject of comprehensive medical rehabilitation, the published standards of practice that substantiate the validity of accurately formulated and designed life care plans have been continuously refined. The constantly developing field of spinal cord medicine benefits this subspecialty and all the organizations that unite the efforts of rehabilitation professionals.

The scope of this article prevents explication of all qualifications required of life care planners to project the needs of persons with SCI and the full methodology to develop a life care plan for patients with SCI. Resources in the form of Web sites, book chapters, and textbooks that detail the process of SCI life care planning are readily available. Contemporary academic practice in spinal cord medicine brings together collaborative interdisciplinary teams for patient care and research. Clinical care, as well as academic inquiry, includes the perspectives of patients with SCI to reconcile classic literature findings and current practice with new discoveries, recent technologies approved by the Food and Drug Administration, and emerging treatment options under investigation at the basic science or human trial stage. Patients with SCI have continually sought clinical evidence to support treatments and health maintenance care that can be scientifically substantiated for clinician compliance and health insurance coverage. In addition, consumers of health care and adaptive products have developed a culture of the lived experience of disablement with SCI. As life care planners are assessing the needs of patients with SCI, they need to be aware of clinical practice guidelines and current textbooks in the field to ensure that published recommendations guide life care plan designs.

Introduction: the anatomic injury determines dysfunction and life care plan design

Life care planning has been established as a methodology for documenting, funding, and orchestrating services, supplies, and opportunities for persons with spinal cord injury (SCI). If implemented prospectively in care coordination, patients with SCI will be most functional, avoid most complications, and achieve their personal potential across their life spans. The International Academy of Life Care Planners has defined a life care plan as a dynamic document based on 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. The patient with spinal cord injury provides a prototype for life care planning because SCI produces quantifiable impairments in sensation and strength along with predictable functional outcomes, and responds to a variety of effective interventions recommended by clinical practice guidelines.

Most functions of the spinal cord as a conduit and relay center for sensory and motor signals are well known and understood. As vertebrates, humans have spinal columns consisting of a stack of weight-bearing vertebral bodies, each representing a body segment. These segments have evolved with a spectrum of functional specializations, such as structures as simple and essential as rib and intercostal muscles for ventilation or as complicated as the upper extremity positions of the hand for fine movements. Spinal cord lesions, therefore, most predictably interrupt function at segments that are injured and segments below them. It is the fragility of the spinal cord and the segmental design of vertebrates that presents the opportunity to systematically examine each dermatome and myotomal segment, thus to determine a spinal cord level. That level is predictive through measurement of multiple domains of outcome of functional independence and burden of care.

SCI disrupts the coordination of other body systems by the nervous system, resulting in various organ dysfunctions. These dysfunctions are systematically addressed in the clinical practice of spinal cord medicine through diagnosis, therapy, rehabilitation, caregiving, and self-care accommodations. These methods have been critically analyzed and formulated into SCI guidelines, and over the last decade a variety of clinical practice guidelines have been developed, based on scientific evidence from clinical studies and consensus of expert clinicians’ opinions.

In 1995, the American Board of Medical Specialties established the subspecialty of spinal cord medicine, a new branch of medical science that has grown to more than 600 board-certified physicians and for which 15 fellowship training programs are available at academic medical centers throughout the United States. The body of knowledge used to treat the clinical condition and disablement from SCI has been assembled into textbooks that have been recently updated. These and other developments have all contributed to the validity of life care plans, and have allowed expert practitioners to deliver prospective care guided by patient-centered life care plans. Life care planning can be a useful tool after SCI, because of the patient’s longevity after injury and the complexity of preventive and supportive care needed following the injury. Efficient and economical care plans can provide a template to enable patients in relationships, work, and community service without compromising patient care needs. Persons with SCI have been the early and ongoing subjects of life care plans that have been proved to be effective for decades. These individuals exemplify the impact of designing these plans to quantify the personal and economic consequences.

SCI is one of the more recognizable and understandable chronic conditions. As a prototype subject of comprehensive medical rehabilitation, the published standards of practice that substantiate the validity of accurately formulated and designed life care plans have been continuously refined. The constantly developing field of spinal cord medicine benefits this subspecialty and all the organizations that unite the efforts of rehabilitation professionals.

The scope of this article prevents explication of all qualifications required of life care planners to project the needs of persons with SCI and the full methodology to develop a life care plan for patients with SCI. Resources in the form of Web sites, book chapters, and textbooks that detail the process of SCI life care planning are readily available. Contemporary academic practice in spinal cord medicine brings together collaborative interdisciplinary teams for patient care and research. Clinical care, as well as academic inquiry, includes the perspectives of patients with SCI to reconcile classic literature findings and current practice with new discoveries, recent technologies approved by the Food and Drug Administration, and emerging treatment options under investigation at the basic science or human trial stage. Patients with SCI have continually sought clinical evidence to support treatments and health maintenance care that can be scientifically substantiated for clinician compliance and health insurance coverage. In addition, consumers of health care and adaptive products have developed a culture of the lived experience of disablement with SCI. As life care planners are assessing the needs of patients with SCI, they need to be aware of clinical practice guidelines and current textbooks in the field to ensure that published recommendations guide life care plan designs.

The ASIA examination: determining spinal cord impairments

Comprehensive assessment in spinal cord medicine seeks to capture the disablement predicament of each unique person who has an SCI. This process starts with the most recognizable and clinically applicable method for assessing somatic motor and sensory impairment: assessment using the American Spinal Injury Association’s medicine examination (ASIA examination), which was updated in 2011. The most fundamental expression of a patient’s spinal cord sensory and motor dysfunction can be summarized by the neurologic level of injury (NLI) and the ASIA Impairment Scale (AIS). The NLI is the most caudal normal functioning spinal cord segment demonstrated by bilateral normal sensation and motor strength. The AIS summarizes the functional significance by segregating patients with SCI into 5 categories, A through E. These categories span from complete injury (A), through sensory sparing (B), to motor sparring (C) and functional motor recovery (D), to full recovery (E). The results of an ASIA examination provide functional information that can be predictive of patient performance in mobility and activities of daily living. Although the results are primarily in the impairment domain, patient outcome performance also depends on other domains of disablement, such as activity limitations and participation. The AIS was adapted from the classification scheme designed by Frankel and colleagues, which abstracts findings from the neurologic examination to summarize the degree of somatic sensory and motor impairment.

When combined with the spinal cord level, the AIS provides an estimate of functional outcomes that may be expected with the successful completion of rehabilitation. The Consortium for Spinal Cord Medicine Clinical Practice Guidelines for outcomes provides an in-depth description of the expected capabilities, and therefore estimates the care needs that various people with SCI may have.

Patterns of impairment after SCI: spinal cord syndromes

An SCI is any damage to the structure of the spinal cord that extends from the brainstem at the foramen magnum to the L1 vertebral level, and continues as the cauda equina to distribute final segmental branches to the sacrum and coccyx. Spinal cord tissue consists of external white matter with myelinated ascending sensory and descending motor fibers that cover a core of gray matter containing cell bodies and interconnecting dendrites and axons from interneurons. Insults come from traumatic contusions, disc herniations, hematomas, abscess compressions, ischemic hypoperfusion, and inflammatory destruction.

Neurologic damage can affect any part of the spinal cord, including the multiple nerve roots that descend from the conus. Localized injuries damaging particular segmental levels produce various patterns of weakness and sensory loss. The distinction between upper motor neuron and lower motor neuron injury can be determined anatomically with magnetic resonance imaging (MRI) or with findings from a neurologic examination. An upper motor neuron injury damages the motor nerves with cell bodies in the cortex and axons that travel down the spinal cord to synapse with the lower motor neurons in the anterior horn at the various levels of the spinal cord. A lower motor neuron injury damages the motor neuron cell bodies in the anterior horn or their axons as they traverse the spinal canal and exit at neural foramina below the vertebra that define the spinal level. SCIs are either complete or incomplete for sensory and motor function. Sensory complete is the absence of perceived deep anal pressure in the rectum. Motor complete is the absence of voluntary anal sphincter contraction. Each of these potential insults can produce a variety of pathologic lesions that manifest clinically as distinctive patterns of motor and sensory impairment. The extent of motor and sensory impairment can be quantified by accurately completing the ASIA examination.

Brown-Séquard syndrome results from a lateral hemitransection, lateral compression, or asymmetric contusion of the spinal cord, causing weakness on the side of the injury and ipsilateral, or opposite-sided, loss of pain and temperature sensation by interrupting the crossed spinothalamic tract. Such patients commonly can walk with a cane and an ankle-foot orthosis (AFO). The prognosis for motor recovery is very good over a 3- to 5-month time frame, because of spared descending motor fibers opposite the lesion and motor fibers that cross from one side of the spinal cord to the other. Cauda equina syndrome is caused by compression of multiple spinal roots in the central canal inferior to the conus, which is typically near the L1 vertebra level. A central lumbar disk that protrudes posteriorly is a common cause. Neurologic examination of patients with complete cauda equina injuries show hyporeflexia and muscle wasting in affected myotomes. Symptoms may include unilateral or bilateral lower extremity pain that radiates below the knees and progresses rapidly to produce bowel and bladder incontinence. Any mass in the lumbar or sacral spinal canal, such as a tumor, hematoma, or abscess, can cause cauda equina compression. The prognosis is good, with swift diagnosis through imaging and emergent surgical decompression. Conus medullaris syndrome can result from damage to the conus by compression or ischemia. Typically the gray matter containing the lower motor neurons controlling the pelvic floor is compromised. Findings on examination include an insensate flaccid anal canal and absence of phasic stretch reflex. These patterns of sensory and motor impairments and functional sparring can implicate lesions of various parts of the spinal cord in cross section.

Rehabilitation for patients with SCI: identification of problems and goals

The rehabilitative care of the person with an SCI begins by developing an understanding of the patient’s life activity, relationships, and goals in life before the injury. Rehabilitation is a continuous process to develop a person to her or his fullest physical, psychological, social, educational, and vocational potential. This development is accomplished by eliminating or compensating for any biochemical imbalance, pathophysiology, anatomic impairment, activity limitation, or environmental barrier.

This initial and ongoing rehabilitation plan becomes the basis for the comprehensive life care plan. The life care planner is challenged to present an understanding of the patient as a person and extract all of his or her medical needs from the record. The subjective portions of the notes provide valuable information about patient attitudes and compliance with the treatments offered. These windows into the patient’s personality are helpful to the life care planner in designing questions and the style in which information is gathered during interviews with the patient and family. The interdisciplinary team is able to formulate a problem list and a plan with short-term and long-term goals. A rehabilitation plan is formulated based on level of injury, patient performance in therapy, associated diagnoses, and complications. Early medical complications encountered include hypotension, pressure ulcers, autonomic dysreflexia, heterotopic ossification, and deep vein thrombosis.

Problem-oriented chart review: identification of needs and organization planning

The problem list and established goals ( Table 1 ) cue the life care planner when reviewing the patient’s medical chart and when conducting needs assessment during preliminary data collection. The problem list is used because the challenge of life care planning is to extract the data required to prepare the best plan using standard life care planning methods. The most useful life care plan can be reconstructed into problem-based interventions for continued care of the patient and for future case management. Review of medical records can be a formidable challenge for the life care planner. The method used by physiatrists serves to recognize and formulate problems, document them in a problem list, review contributions to most specifically define a problem, and determine a next-step diagnostic or treatment protocol as needed.

The first set of problems can best be defined by the medical and surgical diagnoses. An SCI is neurologically classified using the international standards originally developed by the ASIA in 1982 and recently revised in 2011. The first problem is the SCI, which is defined by results from the ASIA examination and summarized by the NLI, AIS, the mechanism for the SCI (such as a motor vehicle accident), and its date. The next problem is spine stability, which refers to the original fracture or dislocation that leads to the SCI and the surgical correction done to reestablish alignments. Information that needs to be captured includes the vertebral levels fused, brace stabilization required, and restrictions in activity.

This section of the problems list also contains previous diagnoses and other complications that are as unique as any patient. The challenge for the life care planner, with the help of the supporting clinician, is to develop a simple and practical outpatient plan for each problem. Nutrition is a critical area of intervention after SCI that benefits from clinical research design. A recent review of nutrition and metabolic response of patients during the first few months after injury confirmed that there is an obligatory weight loss and a reduction in protein stores, with a decline in prealbumin, albumin, and transferrin. Patients recover from the weight loss but need to learn that in the chronic state of SCI, reduced basal energy expenditure can result from the gradual loss of muscle mass. As people with SCI live longer, they are at increased risk at earlier ages for chronic diseases, such as diabetes, osteoporosis, cardiovascular disease, and cerebrovascular disease. The treating clinician is most successful when risk-factor reduction is built into patient diets, activity, and medications, and when the life care plan is designed to sustain these efforts in the community.

The next set of problems focus on impairments in organ function. Neurogenic skin is often listed in this problem cluster, and refers to the impairment in sensation and autoregulation of blood flow to the skin below the NLI. For neurogenic bladder, the foremost goals are the protection of renal function and to achieve continence practically, willful independent drainage, and prevention of infection. A rehabilitation care plan for neurogenic bowel has two main parts: the bowel program and bowel care. The bowel program is the entire plan of care for neurogenic bowel and includes the components: diet, fluids, medication, and bowel care schedule. Bowel care is the process for assisted defecation.

The third cluster of problems addresses the patient’s capability for tasks as a whole person. Mobility for patients with SCI includes a large variety of issues under one problem. These factors can be conceptualized by picturing the patient recumbent lying supine, then extrapolating to the highest level of mobility that can practically be achieved and maintained with equipment and services in the patient’s own community. Activity is a new problem being considered by many physiatrists in contemporary practice. Activity as it pertains to SCI is best defined as repetitive sensory and motor stimulation of the nervous system designed to enhance neuroplastic remodeling, maintain range, and increase muscle mass, endurance, and functional performance. Current treatment protocols at a variety of spinal cord centers provide activity-based restorative therapy in hopes of promoting recovery and keeping the patient maximally fit. Life care planners need to seek physician, therapist, and patient responses to these treatments, and decide with the patient’s clinicians what recommendations are appropriate for ongoing treatment as an outpatient, in the patient’s home, or at other centers. Activities of daily living are self-care focused skills that determine the burden of care required for the assistance or independence of the patient with SCI, and are estimated for various spinal cord levels in the outcome guidelines of the Consortium for Spinal Cord Medicine. At the injury-treatment and outpatient rehabilitation stages, self-care activity is emphasized so that the patient can be discharged and to minimize the need for assistance. Advanced task acquisition will allow the person with SCI to make progress toward recreational and employment goals. Almost no activity occurs without some environmental interaction, which is the substrate as well as the catalyst for personal achievement.

The fourth and final set of problems deals with the capacity of the patient to fully enter into life situations: relationships, the economy, and communities of their choice (education, volunteering, work, spiritual). This aspect is termed participation. Architectural accessibility is the problem area that fundamentally addresses the success achieved by patients in interacting within the entire environment ( Fig. 1 ). Architectural accessibility is furthered if all aspects of the patient’s environment are reviewed for barriers and solutions. Each environment the patient will occupy needs to be reviewed for functional adaptations. The patient is considered in each position throughout the day, including bed, wheelchair, shower, toilet, all the rooms of the home, the family vehicle, and the office or workplace. The primary goal is for the patient to be functional in the home and to be able to complete a daily care schedule. Psychological adaptation is the process used by all patients to understand SCI and its impact on their lives, and to develop a lifestyle that provides health success and satisfaction. The subjective and objective aspects of this experience have been termed quality of life, which is as difficult to define as it is to measure. Hammell has reviewed the literature and has provided perspectives that have focused outcomes on settings for living and access to meaningful life roles. The life care planner must elicit assessments from the treatment team on current diagnoses and required medications, and plan for psychological therapy as an outpatient. Social role function is the problem that addresses the challenges the patient has with full participation within the family, for example as a spouse, mother, father, uncle, aunt, brother, or son. In the community, capabilities need to be enhanced to allow quality function as friend, neighbor, and customer. Success with all other problem areas contributes to success in social roles.

The patient and the environment. The sectors of the environment should be considered from the patient’s perspective. The immediate environment is what is in contact with the person and moves with him or her. The intermediate environment is the space the person occupies that is adapted for him or her. The community environment is the shared space outside of home and work, which has a physical built component and a political component governed by laws. The natural environment is usually minimally adapted and must be accessed with effective mobility equipment or the assistance of others.

( Adapted from Stiens SA. Personhood, disablement, and mobility technology: personal control of development. In: Gray DB, Quatrano LA, Lieberman ML, editors. Designing and using assistive technology: the human perspective. Baltimore (MD): Paul Brookes; 1998; with permission.)

The transition between inpatient and outpatient rehabilitation services is a subject that causes distress, because patients often experience barriers when trying to access services in the community after discharge. These barriers could be surmounted more efficiently with better access to interdisciplinary rehabilitation in outpatient clinics, agency home care, and fieldwork models for services. Transitional rehabilitation models have been used to complete physical rehabilitation in the home and community of the patient’s choice by linking to community agencies, training family members, and maintaining physical therapy, occupational therapy, and social work services. Community reintegration is a component of the rehabilitation process that brings the physically and psychologically adapting patient into the nearby landscape to explore life situations that will occur away from home. Patients need to resume visiting businesses such as grocery stores, pharmacies, and physician offices. More importantly, they may wish to frequent restaurants and visit recreational destinations requisite to their passions, which existed before or were refined after the SCI. Long-term adjustment with SCI has been examined prospectively with assessment of the patient’s locus of control (perceived control over the events that affect their lives), the environmental barriers and facilitators, and the patient’s satisfaction with functional ability. Findings support locus of control as critical to perceived quality of life, productivity status, and satisfaction with performance of activities of daily living. Dominant findings of one study were that social support and peer mentoring were catalysts promoting success, and that stable health and appropriate effective pain management were crucial to subjective satisfaction with community integration.

Transportation can be listed as a separate problem or be included under community reintegration. Exploration of public transportation and preliminary testing for independent driving can often be accomplished during inpatient rehabilitation by certified adaptive driving instructors. A plan for transportation in the life care plan is critical in allowing access to services, education, and work. Success in community transportation is a closely linked prerequisite to success in getting a job.

The life care planner can contribute to success in vocational rehabilitation by recommending adaptive mobility devices with good durability and accurate navigation. Persons with SCI who are in school or gainfully employed report greater adjustment and higher quality of life. The life care plan needs to support patient education needs, adaption equipment, and technology to fully enable employment. There are many unrealized opportunities in work from home, and strong support from the Americans with Disabilities Act (ADA) for accommodations in the workplace. Community travel with public transportation or adapted family vehicles is also an essential goal. Preliminary vocational planning can begin by seeking out the patient’s résumé, previous work experience, educational transcripts, and previous vocational assessments. Careful review of patient’s past education, recent work history, and job description can come from the vocational counselor, the patient, or the patient’s family or employer. Success with self-care, attendant management, community transportation, and independent living are all positive predictors of employment outcomes. Rates of successful vocational interventions after SCI vary from 12% at 1 year to 71% at 2 years of follow-up, with a mean age of 38 years at employment. Careful review of social history will suggest questions for the patient’s interview that clarify goals for the life care plan addressing participation in patients’ lives. Spiritual access is a problem of importance for various patients because churches are exempt from ADA laws. The goal of fullest participation requires plans for transportation, toilet access, and physical access to the entire building where services are celebrated.