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September/October 2013 Issue

Transitional Care After Limb Loss  — Boston Marathon Survivors Navigate Change
By Lindsey Getz
Social Work Today
Vol. 13 No. 5 P. 18

Life after limb loss requires preparation for multiple transitions of mind, body, and spirit. Social workers use their expertise in identifying and connecting patients with resources to assist and support them through the challenge.

Exactly 100 days after the horrific Boston Marathon bombings, Marc Fucarile was headed home from Spaulding Rehabilitation Hospital—without his right leg above the knee. Fucarile also broke his spine and bones in his left leg and foot, ruptured both eardrums, and suffered severe burns and shrapnel wounds when one of the bombs exploded near him and a group of friends at the finish line as they watched another friend complete the run. He was the last of the wounded to check out, but his journey of recovery is far from over. Both rehabilitation and surgery will continue to be part of his future, and adjusting to life after limb loss can be a long process.

Although Fucarile realized he would be a long-term patient with an ongoing road to recovery, the day that he would eventually check out of Spaulding was always at the forefront of his care. Spaulding focuses on transitional care planning, and putting resources in place for patients to thrive at home is a priority from day one. With a great number of adjustments needed to return to daily life after rehab, transitional care planning can be especially important for patients after limb loss.

Under the transitional care model, the focus is on what’s needed to get the patient home as soon and effectively as possible. That means assessing the patient’s potential needs at the time of admission and utilizing ongoing consultation and assessment throughout the patient’s stay to remain on track for those needs. Many of those who lost limbs in the Boston Marathon bombings did not immediately go home. After hospital discharge, they began inpatient physical therapy, but the process of ultimately transitioning home already had begun through transitional care.

“When hospital social workers are working with new amputees who are transitioning from a hospital to their discharge destination, there are multiple considerations that help determine the best discharge for the patient,” says Dawn O’Keefe, MSW, LCSWA, of the care management department/discharge planning for Duke Regional Hospital in North Carolina. “Some important considerations for planning a safe and effective transition plan are the patient’s support system, the patient’s functional status, and his or her coping skills. Health insurance coverage will also impact the individual’s discharge plan from the hospital.”

Assessing Needs
Even though long-term needs are kept in mind early on, it’s important to tackle immediate needs first with trauma patients. For those impacted by the Boston Marathon bombings, primary concerns were focused on the patients’ and their family’s safety. “They needed reassurance that they would be supported and would be OK,” says Karen Potter, LICSW, a clinical social worker in Spaulding’s case management department. “One of the most important things they all wanted to know was that a family member could stay with them in the room overnight. Many of these patients were still very frightened and still fearing for their safety, so that was something we had to address first and foremost.”

Contributing to those fears was the fact that many families were separated after the attack, says Sally Johnson, LICSW, a senior clinical social worker at Spaulding. “Many patients were dealing with a lot of separation because their family members were taken to different hospitals,” she says. “There was a lot of anxiety and a need to feel safe again.”

As patients’ fears about their immediate safety began to subside, they started to come to terms with their new situation, and many other needs had to be addressed. After limb loss, social workers can play a critical role in helping patients connect with necessary resources. “A social worker can help with access to case managers and insurance, both of which will help the patient feel more in control of things,” Johnson says. “When they know there’s resources available both now and in the future, they feel a sense of security that they didn’t have before. But it’s important to know what’s available both now and down the road because patients aren’t always immediately ready for opportunities like support groups. A social worker might be able to point the patient in the direction of counseling but encourage them to go when they’re ready.”

Monitoring Mental Health
Any sort of counseling for trauma patients requires some special considerations, which was the case for those treated after limb loss from the Boston Marathon bombings. Potter believes that all social workers should learn more about posttraumatic stress symptoms and treatment because they never know when they’ll encounter a patient who has experienced trauma. “It’s also important to recognize that debriefing after a group session of counseling can traumatize the other patients who didn’t experience that same type of trauma. In these situations, social workers should encourage generalities instead of focusing on the gory details,” she says.

“The people who had the most difficulty with the bombing were those who had previous trauma in their life, such as a car accident or maybe a family member that had died suddenly,” says Jim McCauley, LICSW, associate director of Riverside Trauma Center in Needham, MA. “They were basically retraumatized. It’s important to recognize that individuals with a trauma history are significantly at risk and may require long-term help and referrals for ongoing counseling.”

The trauma center is a program of Riverside Community Care, a private nonprofit mental health agency funded by the Massachusetts departments of public health and mental health to respond to critical incidents. It has a small full-time staff that has trained more than 800 people statewide to respond after disasters or other traumatic events. During the three weeks after the bombings, Riverside deployed 34 trained responders who provided psychological first aid and coping groups for more than 600 eyewitnesses, runners, first responders, business owners, employees, and residents of Boylston Street.

There’s a risk of experiencing PTSD symptoms for patients who undergo any type of trauma, including the loss of a limb, according to O’Keefe. “Support for these patients includes mental health services, either through group or individual therapy. Antidepressant and/or anxiety medications can be helpful as well. In addition to assessing appropriate resources, the new amputee’s personality, coping skills, and even faith are variables that will greatly impact recovery rate and success. Social workers can help individuals identify positive coping skills and personality strengths that will assist individuals in recovering physically, emotionally, and psychologically,” she says.

Omal Bani Saberi, LCSW, who counsels various patients in private practice in San Bruno, CA, including those who have above-knee bilateral limb loss and who is an above-knee bilateral amputee herself, says the psychological experiences of those with limb loss are very similar to those of grief and loss of loved ones. It’s also a loss that can have an effect beyond the patient. “Social workers need to be there to help guide and support the family members as they grieve with their father, mother, son, or daughter,” Saberi adds.

Language Matters
As social workers begin to aid in the recovery process, even language can dramatically impact the patient. “Social workers do need to understand that language is a key to healing,” Saberi says. “First, they are people with limb loss. They are first a human being—not just a trauma survivor. Although they may see themselves only as someone without limbs, they are still who they are and were.”

Paying close attention to the language used was a consideration at Spaulding during the treatment of patients with limb loss. For instance, the staff was careful to use the word “survivor” instead of “victim” when talking about those affected by the bombings. “We want people to move from feeling like victims to feeling like survivors, so we use that terminology,” Johnson explains. “So much of the recovery process is affected by attitude.”

Another early conversation should be about substance use and abuse. As patients begin the difficult recovery process, some may be at a higher risk of turning to drugs and alcohol to dull the pain, Potter warns. “It’s important to help patients understand the risks of coping using drugs and alcohol,” she says. “Social workers should have these conversations early on instead of waiting until there’s a problem. Often, if the patient previously used drugs or alcohol, they are more likely to revert to that again.”

Planning for the Future
For patients who recently lost limbs in any circumstance, the future can feel incredibly uncertain. Often, that’s where connecting with others can be a tremendous help. “After the bombings, there were a lot of stories in the news about veterans hopping in their cars and heading to Boston,” McCauley says. “Many of them who have lost a limb instantly felt connected with those who lost limbs in Boston. It can help for new patients with limb loss to talk to people like veterans who have already gone through the recovery process. The military uses the term of ‘new normal,’ and that’s what many of those recovering from the Boston attack will have to face.”

There are definitely some similarities between veterans who have lost limbs as a result of intermittent explosive devices in war and those from the Boston Marathon attack. However, Potter says that one big difference is that veterans and law enforcement personnel often have a personal view that they “signed up for this and put themselves in harm’s way.” Because of those feelings, the recovery process may be more challenging for such patients.

“A social worker needs to realize that veterans and law enforcement personnel may need even more validation because they’ve had to push their feelings aside,” Potter says. “They often experience guilt about feeling bad for themselves or angry because they feel they put themselves in this situation. Those standing at the finish line of the Boston Marathon, on the other hand, may be more likely to feel like a victim.”

Even patients who have lost limbs in less traumatic circumstances need support, including mental health services. “Social workers must be aware that it’s not only patients who have been through traumatic events but anyone who has lost a limb that will need support and resources. Those who have lost a limb due to an accident or to disease are also undergoing an enormous change and experiencing the grieving process for the loss of that limb,” Johnson says.

“The psychological impact of a traumatic event that results in permanent ‘disfigurement’ of the body is extremely complex,” O’Keefe adds. “But whether limb loss was the result of a traumatic event or disease progression, it is still a crisis event that affects all areas of an individual’s life. It involves the loss of independence and self-efficacy, and it impacts the individual’s sense of self-worth and esteem. Patients may become withdrawn or depressed. The individual may experience grief almost in the same way one might experience the loss of a loved one. Social workers should be aware that the grief stages are fluid and do not appear in any specific order. People grieve in their own time, in their own way, and at their own pace.”

As patients begin the transition from hospital or rehab to home, social workers can make a huge difference by doing what they do best. “Helping people to identify and connect with long-term resources is something that social workers are tremendously good at and also one of the most important ways they can help during the recovery process,” McCauley says.

Connecting them with other patients also can be a huge help. “Just being able to talk to someone who understands exactly what you’re going through makes a big difference,” says Johnson, who facilitates a limb-loss support group through Spaulding. “Regardless of the situation that caused the amputation, these patients can often connect and help one another. When people start to feel isolated and feel like nobody ‘gets it’ is when they are at a higher risk of anxiety or depression. But simply being around other people who understand what it’s like is a really important part of the healing process.”

— Lindsey Getz is a freelance writer based in Royersford, PA, and a frequent contributor to Social Work Today.