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Advocate for patients with catastrophic injury, illness
CMs help families deal with present, the future
By Jolynne "Jo" Carter, BSN, RN, CCM
Beverly Cunningham, MS, RN
An accident has left John, 52, with a C-4 cervical-level fracture, and the prognosis is that he will remain a quadriplegic. Hospitalized in the intensive care unit, John has been assigned a catastrophic case manager, who has met with him and his wife, Mary. As the case manager develops a care plan to take John through initial treatment, a long rehabilitation, and beyond, she is in constant communication with John's physicians, nurses, the hospital social worker case manager, other members of the treatment team, the insurance company, and other involved parties. The case manager makes sure that John and Mary are continually informed, but in the days immediately following the accident, they remain in shock, unable to comprehend much more than the immediate events.
After a catastrophic illness or injury, patients can be so overwhelmed and medically ill that they are unable to deal with what comes next. For the family, dealing with the devastating trauma may make it nearly impossible to think about rehabilitation, long-term plans, and the inevitable changes that will follow as a loved one becomes medically stable, but cannot return to a pre-injury or pre-illness state.
In these catastrophic situations, the case manager's advocacy — providing access to the right care and treatment resources at the right time — extends to a vitally important leadership role as well. Through the case manager's leadership, patients and families can begin to embrace a vision based on the highest level of clinical outcome possible. The case manager is in a unique position to outline what's possible, and then to create alignment among all the stakeholders (families, health care providers, payers, employers, and so forth).
Dealing with multiple interested parties makes communication complex; however, that communication is required to help all involved gain consensus and develop strategies to achieve those goals.
The case manager should take a leading role in assembling the resources needed to implement the strategies and achieve the desired outcomes. The vision of what is possible is grounded in clinical and financial reality and the experience of the case manager, particularly one who is certified. Through certification, case managers demonstrate that they possess the requisite knowledge, skills, and expertise to practice case management competently.
Envisioning desired outcomes
When dealing with a catastrophically ill/injured patient, the case manager's vision of desired outcomes begins with the assessment of the individual immediately after the injury or onset of the illness — medically, functionally, mentally, and emotionally. The case manager's assessment process requires dialogue and listening in order to assist that patient and family to develop a vision. The challenge, however, is that the patient's care plan, treatment, and vision for the future is developed in the midst of a family in crisis and transition.
John's hospitalization has put stresses on the family. Mary has taken time off from her work as a self-employed consultant, but she is trying to maintain her business while spending as much time as possible at the hospital. The knowledge that she is now the primary breadwinner and will remain so in the future adds to her emotional and financial stress, along with concerns about their son, who is in college, and their daughter, a high school student. The hospital social worker case manager spends time with John and Mary, offering support and suggesting counseling resources for the family.
A catastrophic injury or illness disrupts an entire family system. The fear of losing a loved one and the reality that this person will never be the same medically escalates the family's stress. The family also may feel overwhelmed by the amount of information they are receiving from physicians, nurses, and other caregivers. The case manager's advocacy role is to ascertain whether the patient and/or family truly understand the information as it is presented by clinicians.
Focus on basics of learning
Case managers must also consider the effect of stress on the patient's or family's ability to take in information. Their approach should be grounded in the three basic types of learning: visual, auditory, and kinestic. The case manager presents information verbally, repeats it frequently to the patient/family, provides written information, draws diagrams or pictures to illustrate concepts or options, and demonstrates and/or involves family members in patient care whenever possible. In every interaction, the case manager orients the patient/family to the desired outcomes and what all parties are trying to achieve, while being judicious in the amount of information presented at any one time.
The physician explains that John's condition makes him prone to "decubiti." The case manager can tell by the looks on John's and Mary's faces that the word is intimidating and they do not really understand what it means. The case manager's communication intervention prompts the physician to explain that this refers to a skin breakdown or what would be known in old-fashioned terms as a "bed sore." The case manager also can provide access to facility educational resources, as well as Internet resources for the family to review.
The advocacy role involves dealing with the payer. Frequently, the case manager needs to explain to patients and families how their benefits drive transition planning. Not only are the clinical aspects of catastrophic illnesses/injuries stressors for patients and families, but also the financial impact as well. While the family is concerned about the health and long-term well-being of a loved one, the discussion must occur regarding benefits from the payer — or regarding far more serious transition planning in the case of an unfunded patient.
Further, in an advocacy/leadership role, the case manager empowers the family to ask questions and obtain information in a way that they can comprehend. This requires that the case manager utilize excellent verbal and written communication skills to successfully address complex and confusing treatment and care options to all parties — including the payer.
In addition, the family's mental and emotional upset can cloud decision making, particularly as it relates to the patient's long-term care — for example, contemplating the next phase of the patient's treatment after hospitalization, families may seek a rehabilitation facility that is close and convenient, rather than choosing a facility that has the highest level of medical expertise but is located hours away from the family home.
The case manager's role is not to sway or influence the family, but to ensure that everyone involved has the necessary information. The goal is to make solid decisions that are aligned with the outcome of maximum medical recovery and the highest degree of satisfaction for the patient and family, while taking into account the resources that the insurance company or other payer will authorize.
As an effective leader, the case manager should take an active role in addressing issues, for example, guiding the family with questions that need to be asked as rehabilitation facilities are evaluated and asking tough questions about how the family can cope with the lifestyle changes ahead. This demands that the case manager assess how well the patient/family understands the situation, has accepted the clinical reality, and is emotionally and psychologically capable of making choices for the next treatment level.
Although ABC Rehabilitation Center is closer to home, after talking with the case manager and assessing all their options, John and Mary have selected XYZ Rehabilitation, which specializes in patients with these types of injuries, even though it is six hours away. Meanwhile, the case manager is negotiating with the insurance company to pay for services at XYZ Rehabilitation, which is out of network, explaining why it is beneficial for all parties. The case manager explains that the expert care that John will receive is likely to result in the maximum medical and rehabilitative outcomes as outlined in his care plan. Over time, this will likely decrease the total cost of the claim for the payer.
As the strategy and resources are identified and agreed upon, the case manager can turn attention to implementation of the plan. The transfer of a patient from one treatment setting to another is a critical time of transition. It may be from hospital to subacute or rehabilitation facility, rehabilitation facility to home, or even within the hospital from ICU to the hospital floor. Case managers know that transition planning is essential in order to avoid breakdowns in communications, in treatment continuity, and/or in care planning. (Transitions are so crucial that some case management firms require the patient be seen in person by a nurse case manager within 24 hours of a transfer from one treatment setting to another, one facility to another, or a facility to home.)
NPSGs and transition planning
The Joint Commission in its 2007 National Patient Safety Goals highlights several important components of transition planning, for example, accurately and completely reconciling medications across the continuum of care. This means establishing "a process for comparing the patient's current medications with those ordered for the patient while under the care of the organization," and ensuring that "a complete list of the patient's medications is communicated to the next provider of service when a patient is referred or transferred to another setting, service, practitioner or level of care within or outside the organization." The Patient Safety Goals also emphasize that "the complete list of medications is also provided to the patient on discharge from the facility."1
CMs role in transition
Case managers play a pivotal role in working collaboratively with health care providers in helping patients transition from one care setting to another. Through open communication among all parties, case mangers help patients navigate the transition while keeping their best interests and needs at the forefront.2
Another National Patient Safety Goal in transition planning is for "handoff communication" to be undertaken by the case manager, covering both clinical and financial considerations. Leadership for the case manager means not only excellence during the transition but as a follow-up as well. For example, were the patient and family satisfied with the transition? What were the outcomes directly related to transition, including readmission and reason for readmission? In the case of a readmission, was the patient discharged from the facility too early? Was the patient appropriately placed in another treatment setting? Was the plan understood by the person receiving the patient and/or assuming care for the patient at the next level of care?
Throughout the process, the case manager's leadership extends to upholding a vision of what is possible for the patient, grounded in clinical knowledge and prior experience. The case manager's ability to see beyond the immediate term — after the initial trauma or onset of illness, through the phases of the care and treatment plan, to the likely outcomes — also helps to guide the patient and/or family beyond their initial fears.
The reality is patients who are extremely ill or severely injured often have repeated setbacks. Knowing this, the case manager can offer leadership through "anticipatory guidance" of what should happen next. Case managers also should consider potential barriers or problems and take proactive steps to reduce the likelihood of their occurrence, while providing education to the patient and family to enhance their ability to avoid or mitigate clinical problems. This requires a high level of communication skill and patience, which may run counter to the fast-paced, high-turnover environment such as a hospital.
After a catastrophic event, patients may not return to their pre-injury or pre-illness state. The patient, however, is still able to move toward the desired outcomes. Those outcomes and a vision of what is possible are the foundation of the case manager's leadership. The case manager offers hope that is grounded in clinical knowledge and case management experience, and provides education that leads to informed decisions in the best interest of the patient.
[Editor's note: Jolynne "Jo" Carter, BSN, RN, CCM, is a commissioner with the Commission for Case Manager Certification (CCMC), the first and largest nationally accredited organization that certifies case managers (see www.ccmcertification.org). She also is director of network services at Concord, CA-based Paradigm Management Services LLC, accountable for the day-to-day management of Paradigm's national network of nurse case managers, which includes approximately 130 registered nurses across the United States.
Beverly Cunningham, MS, RN, is vice president, clinical performance improvement (which includes responsibility for case management) for Medical City Dallas Hospital. She also is chair-elect of CCMC.]