BY, MSN, MS, RN, CCM, AND , DNP, RN, MBA, CHC, FACHE, CCM
Receiving a cadaver organ transplant is a life-changing experience. Transplant recipients often experience a wide range of emotions from the highest high to the lowest low. The thrill of receiving a life-saving transplant is sometimes paired with the heartbreak of knowing someone died so their prayers would be answered. While being grateful for the gift of life, the transplant recipient may be mourning the loss of someone they never met. This emotional roller coaster can cause feelings of joy and guilt. The recipient may feel that they benefitted from the death of someone else. Although this feeling can become overwhelming, not every transplant recipient experiences survivor’s guilt.
Survivor’s guilt is an intense feeling that can have a lasting and significant impact on the emotional well-being of an organ transplant recipient. Survivor’s guilt can morph into post-traumatic stress disorder (PTSD). According to the American Psychological Association, an estimated 50% of transplant patients experience at least one episode of substantial anxiety or depression within the first 2 years of the post-transplant period. Symptoms of post-traumatic stress disorder (PSTD) are also prevalent, with one study reporting nearly 25% of transplant patients displaying PTSD symptoms. In the current version of the diagnostic manual, the DSM-5, survivor’s guilt is a symptom of post-traumatic stress disorder (PTSD). It may be viewed as one of the cognitive and mood-related symptoms of PTSD, which include having distorted feelings of guilt and negative thoughts about oneself. However, patients can experience survivor guilt without having PTSD (Cherry, 2021).
Pre-transplant depression and fear are predictors of poor post-transplant outcomes. Pre-transplant depression is noted for various reasons including healthcare disparities, lack of a living donor and social isolation due to COVID-19 (Delibasic, Mohamedali, & Raman, 2017). Other factors that can increase the likelihood of developing survivor ‘s guilt include:
- history of trauma
- presence of depression or other mood-related disorders
- low self-esteem
- lack of social support
- poor coping skills
- children, adolescents and others with underdeveloped coping skills (Cherry, 2021)
The most common signs of survivor’s guilty include:
- change in mood
- increased feelings of anxiety, anger and depression
- mood swings
- angry outbursts
- feelings of helplessness
- increased startle response
- hypervigilance to surroundings
- inability to sleep well
- not wanting to be around people
- lack of motivation
- obsessive thoughts
- appetite changes
- racing heart
- thoughts about the donor and family (O’Mara, 2020) (Berliner, 2019)
These signs are normal immediately post-transplant and with time will decrease in frequency and resolve on their own. Survivor’s guilt may be transformed into an increased sense of purpose and appreciation for life. Sometimes these feelings can become so severe that they impact the transplant recipient’s ability to function, mental well-being and their quality of life. If, after a few months, the transplant recipient continues to display signs of survivor guilt, a professional therapist may be needed. Receiving professional interventions early can help avoid this by guiding the patient in managing the symptoms and minimizing painful thoughts and emotions. Survivor guilt can have lasting and significant impact on the mental and emotional well-being of transplant recipients (Berliner, 2019).
CASE MANAGEMENT INTERVENTIONS
There is no timeline for healing and mourning. The case manager needs to periodically ask transplant recipients how they are doing and offer support. Acknowledgement of their feelings and what they have been through is very important. Transplant recipients need to know that their feelings are common post-transplant. They need time to mourn for the donor and family. Active listening and letting transplant recipients know it is okay to talk about their experience and feelings are essential. Transplant recipients should be encouraged to speak with others who have had a transplant and join a support group if available. The case manager should encourage self-care, regular physical activity, a nutritious diet and plenty of rest and relaxing activities. Let them know that it is OK to feel happy about their transplant while still mourning the donor and encourage them to do something positive for themselves or someone else.
One way to help transplant recipients come to terms with their feelings is by focusing on the fact that for both the donor family and the recipient, the transplant is one way to get a sense of meaning from a death. That understanding can be a source of comfort. For many transplant recipients, getting in touch by writing a letter to the donor family can help. To respect privacy, organ donation organizations won’t allow direct contact without the donor family’s agreement.
Pre-transplant psychological evaluation and treatment are key to treating depression before a transplant. Patients treated with antidepressants prior to transplant were less likely to demonstrate cellular rejection than those not on antidepressants. The incidence of depression exacerbated poor compliance with medication and nutritional adherence interfering with positive outcomes. A history of depression pre-transplant revealed psychiatric issues within one year of transplant. It is not recommended to deny transplant due to depression, but it is valuable to treat the depression pre-transplant (Smith, Blumenthal, Snyder, Mathew, & Palmer, 2018). Untreated pre-transplant depression can lead to increased length of hospitalization, exposure to hospital-acquired infections and decreased postoperative outcomes (Smith, Snyder, Palmer, Hoffman, & Blumenthal, 2018).
The transplant recipient may feel guilty to have survived this catastrophic event. Survivor’s guilt can weigh heavily on the transplant recipient and may be difficult for the transplant recipient to process and understand. They may feel guilty for being alive. Lifestyle changes, medications and immuno-suppression — necessary for the organ transplant to be successful — can take a toll mentally. Post-transplant depression and survivor’s guilt can impact adherence with the treatment plan. Early identification and treatment of depression and survivor’s guilt improve outcomes. It’s important for case managers to know the signs of survivor’s guilt and interventions to assist the transplant recipient in adjusting to their second chance of life.
Berliner, Tali (2019). What We Need to Know About Survivor’s Guilt. Retrieved from the Psychological Group Fort Lauderdale web site https://thepsychologicalgroup.com.
Cherry, K. (2021). What Is Survivor’s Guilt? Retrieved from the Very Well Mind website: https://www.verywellmind.com.
Delibasic, Maja; Mohamedali, Burhan; Dobrilovic, Nikola; and Raman, Jaishankar (2017). Pre-transplant depression as a predictor of adherence and morbidities after orthotopic heart transplant. Retrieved from Journal of Cardiothoracic Surgery, DOI 10.1186/s13019-017-0626-0.
O’Mara, Lori (2020). What is Survivor’s Guilt and how to help those who suffer from it. Retrieved from Cope Better Therapy website: https://copebetter.com.
Smith, Patrick J.; Blumenthal, James A.; Snyder, Laurie D.; Mathew, Joseph P.; Durheim, Michael T.; Hoffman, Benson M.; Rivelli, Sarah K.; and Palmer, Scott M (2016). Depressive Symptoms and Early Mortality Following Lung Transplantation: A Pilot Study. Retrieved from https://doi.org/10.1111/ctr.12874.