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June 2003


Family Doctoring

By Robert S. Levin, PhD


Family members can, and should, play a significant role in the treatment of a chronic pain sufferer. Studies have shown that when family members are part of the treatment plan, they can act as interventionists1 and take on a number of relevant responsibilities to promote wellness. To meet the needs of the chronic pain sufferer, it is essential to make education and training services available to both the individual and their family—a concept that now forms the basis for standards set forth in many pain treatment programs. Family members are helped to understand the impact of chronic pain, to improve their relationships with the individual, and to mobilize their strengths to cope with the condition in a positive and pragmatic manner. They receive specific instruction in ways to facilitate treatment goals, including training in specific behavioral-medical-adaptive techniques. Home training programs for the family provide continuity and consistency, both inside and outside the home. For the purposes of this article, the term “family” includes nuclear and extended family members, friends, volunteers, companions, and any other caretakers who play an advocacy role.

PERSON-CENTERED PLANNING

Over the past several decades, there has been a dramatic organizational shift in business and industry that is now influencing the health care field by encouraging patients and family members to become active participants in the treatment process. Evidence suggests that giving patients the opportunity to include family members in the treatment milieu will help with decision-making and behavioral-functional outcomes. Family members can motivate the patient to become a more active participant, which can, in turn, lead to more positive gains. This has led to serious dialogue within the health care profession whereby professionals are questioning the efficacy of family involvement as an innovative and accepted form of treatment intervention. As part of the debate, there are concerns regarding the most financially appropriate ways in which to manage chronic pain cases with the least amount of exposure, cost, and liability. It has been found that when families take active roles alongside pain patients, they more often effect positive therapeutic change.2 Medical complaints and lawsuits appear to significantly decrease when patients and family members agree to treatments and take responsibility for their decisions.

This process is referred to as Person-Centered Planning (PCP). It is a multisystemic teaming approach that promotes self-determination through family involvement, personal choice, and community opportunity. Multisystemic teaming is based on systems theory and involves a variety of persons, programs, and agencies by interacting with designated family; friends; private insurance; vocational and educational agencies; medical, social, religious, and leisure programs; and state, county, and federal funding sources. There is a natural advocacy component to this process that incorporates a support team to empower the chronic pain sufferer. The approach is frequently requested with cases that are complex and involve a number of persons, professionals, procedures, and/or treatments. The process is goal-outcome oriented by focusing on the person’s needs, wants, aspirations, and barriers through supportive team intervention.

What distinguishes this approach from other similar treatment models are the multisystemic teaming framework and the placement of family in a pivotal role. It is an approach to plan, coordinate, and implement an ongoing therapeutic program in which professionals and other personnel, including the patient being served and the individual’s family, participate as a team. The family is expected to play a defined role. Each participant on the team utilizes their unique skills, competencies, insights, and perspectives to identify goals for the patient and devise ways to meet them. A major benefit of the PCP process is the ongoing education and role expansion of team members. Through face-to-face contact with various persons and disciplines, team members learn from each other. They also obtain and share information that increases all team members’ skills and competencies.

At the time when I adapted the PCP model as an outgrowth of my work with the State of Michigan in the early 1980s, the movement to deinstitutionalize developmentally disabled persons was mandated by the federal courts.3 At that time, developmentally disabled persons were removed from institutional settings and resettled in community-based programs or foster homes, or returned to their family residence. There was an emergent need to train caregivers and family members to work with these displaced persons in the community, an approach that was a major departure from the medical model used in institutional and hospital settings at that time. This approach was later used by Michigan Comprehensive Health Services (MCHS) in its work with traumatic brain injury (TBI) cases where teaming and the inclusion of family members became an integral component to the treatment process, a model that has since been modified for work with chronic pain patients.

The PCP approach believes in focusing on the strengths and attributes of the patient. It, like Positive Psychology,4 a recent school of thought, focuses on positive strengths and capabilities of the patient by developing treatment modalities that help the individual move beyond their symptomatic issues through personal planning and encouragement. In the case of chronic pain sufferers, having the patient develop and participate as an active team member becomes a defense against their feelings of helplessness and sense of victimization. It is a successful treatment approach to empower the individual to take charge of their life. PCP maintains that families of chronic pain sufferers play an essential role in supporting the patient. They are often seen as the most invested persons to work toward the patient’s success, especially when they are properly instructed. Further, families should always be encouraged to become part of the process, unless deemed otherwise.

Chronic pain patients are often preoccupied with the pathophysiological symptoms associated with pain that impact quality of life. The patient needs to regain control. This is where family can be of particular importance as they undertake responsibilities to monitor and/or assist with employment, housekeeping, transportation, medications, daily programs, compliance with physician’s orders and appointments, and all other daily living needs. The PCP approach considers emotional support essential during this time when seemingly overwhelming issues often arise from the effects of chronic illness when patients and their families face a host of difficult and complex medical and social challenges.

TWO MODELS OF FAMILY TREATMENT

Two exemplary models, both hospital-based and outpatient, illustrate how a person-centered philosophy reflects a new treatment approach: the Cincinnati Children’s Hospital Medical Center and the Pediatric Palliative Care project at Seattle Children’s Hospital. Both models have received national recognition for their approach as a family-centered design that places the family at the forefront of treatment. The Cincinnati Children’s Hospital Medical Center’s family-centered approach encourages health care providers and families to work together to meet the needs of the patient. According to literature offered by the medical center, by providing information and insights offered by family, they “can enhance the professional staff’s technical knowledge, improve care and help [them] design better programs and friendlier systems.” This team approach embraces respect for family, informed choices, information sharing, emotional support, collaboration, and empowerment.5

The Pediatric Palliative Care project studied family-centered care by bringing together the patient and family to implement a “multi-faceted, collaborative, statewide initiative designed to improve continuity of service and quality of care for children with life-threatening illnesses,” according to the Web site, Promoting Excellence in End-of-Life Care. Professional staff, patients, and families worked cooperatively in a team approach. Follow-up surveys demonstrated measurable improvements in patient-family satisfaction, health-related quality of life, functional well-being, and provider satisfaction with health care. One of the unexpected outcomes of this project demonstrates that as a team becomes more family-centered and patient-focused, there is a potential for cost containment of medical services that can be realized by transitioning patients away from treatments that were seen as ineffective, all the while maintaining quality of life care.6

THE PATIENT AS ACTIVE PARTICIPANT

The PCP approach not only expects the family to play an important role in the treatment of the pain patient, it also requires the patient to be an active participant. The positive aspects of family can be both therapeutic and cost-effective when team members are properly trained to implement clinical and nonclinical programs developed with professional staff in such disciplines as physical medicine, nursing, occupational therapy, physical therapy, speech pathology, and psychology. These programs, when properly taught through education and training, enable the family to become more proficient, assisting the patient by helping to assure a continuum and consistency of services. Since the family is the most invested caregiver and will be around to help the patient many years post injury/illness, the training of family to work with the patient becomes an excellent long-term investment.

A typical pain management case might be referred by the insurance company stating such issues as the patient is reported to be unhappy with his treatment team and/or program and is requesting a reevaluation of his case. Progress has been documented as slow, costly, and unproductive, and pain symptoms and complaints continue with little relief, which is affecting home life and employment.

The process begins with a facilitator who meets with the patient to discuss the PCP approach and how the process works. In an attempt to dispel any misconceptions or false beliefs, the patient is helped to realize their physical status and medical prognosis. Many patients seem to have trouble understanding that not all pain is curable. The impetus of the program is to help the patient regain control by taking control of their medical treatment. Unless this is clearly explained from the onset, problems with disillusionment will affect the rehabilitation process at a later date. The goal of pain management is improved patient functioning and adjustment, particularly when there is no cure for the underlying condition.

The next step is to validate the individual’s complaints and concerns and to empower the patient to actively participate in the planning process by developing realistic goals, objectives, methodologies, time frames, and expected outcomes that are measurable and accountable. These are developed using a team approach where family and other core members, with the permission of the patient, become integral to the process. All services are coordinated in an individualized, integrated, and comprehensive manner. A key component of the program allows the patient to take full responsibility for all decisions made, all aspects of the treatment plan, and the ongoing process. The health care professionals work with both the patient and the agencies to support the patient’s plan. The facilitator is responsible for monitoring the patient and all team members’ programs, costs, and frequency of services as they help the patient reach goal-outcomes. Programs are reviewed periodically and those that are not acceptable are revised or discarded.

Thus, by giving the patient control over his treatment and having a support system to advocate for the individual’s success, there is less chance for failure to occur because the patient accepts responsibility for outcomes. This therapeutic resolution becomes the mechanism by which the PCP process operates.

THE VITAL FAMILY ROLE

With an aging population and seemingly miraculous improvements in health care technologies and medical treatments, there is an ever-increasing demand for effective pain management programs. The PCP approach offers a conservative, financially sound, and successful method with which to treat chronic pain sufferers at a time when chronic pain is thought to be costing the United States more than $120 billion a year in lost wages, decreased productivity, medical treatments, and related expenses.7 It is a planning and treatment approach in which the pain patient takes full responsibility for the development and implementation of the program. The role of family is seen as vital for success of the program because they have a special relationship with the patient and can offer creative choices, assistance, and emotional support. The professional team that is theoretically hired by the patient will need to meet his or her needs by showing accountability and establishing patient satisfaction. This process is cost-effective and demonstrates measurable and positive outcomes by minimizing program failure through patient acceptance and patient ownership of the program.

Robert S. Levin, PhD, is a rehabilitation psychologist and president and CEO, Michigan Comprehensive Health Services, in Birmingham, Mich. He wrote this article with assistance from Julie Colish, MA, lecturer, at University of Michigan-Flint. REFERENCES

  1. Clay RA. Reaching out to families of cancer patients. APA Monitor Online. 1999; 30. Available at: www.apa.org. Accessed February 18, 2003.
  2. Taylor HG, Wade SL, Stancin T, et al. A prospective study of short- and long-term outcomes after traumatic brain injury in children: behavior and achievement. Neuropsychology. 2002;16(1):15-27.
  3. Civil action 78-7084. US District Court, Eastern District of Michigan, Southern Division. Judge Charles Joiner.
  4. Seligman MEP. Authentic Happiness: Using the New Positive Psychology to Realize Your Potential for Lasting Fulfillment. New York: Free Press; 2002.
  5. Family-Centered Care. Cincinnati Children’s Hospital Medical Center. Available at: www.cincinnatichildrens.org. Accessed February 22, 2003.
  6. Promoting Excellence: Full Report: Special attention to children with life-threatening illnesses. Available at: www.mywhatever.com. Accessed February 20, 2003.
  7. Griffin RM. The price tag on pain: chronic costs. WebMD. Available at: www.webmd.lycos.com. Accessed February 27, 2003.

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