Why Is Social Reintegration Support for Patients With Left Ventricular Assist Device Necessary?

Tomoko Inoue; Naoya Sakanaka; Misato Ota; Takahisa Noma; Yoichi Yamashita; Taiko Horii; Tetsuo Minamino

doi:10.1253/circrep.CR-25-0004

Abstract

Left ventricular assist devices (LVADs) serve as critical life-sustaining therapy for patients with end-stage heart failure awaiting heart transplantation, significantly improving survival rates and enabling social reintegration. However, many patients with LVAD face multiple challenges in their daily lives and social reintegration, such as anxiety about the device, low societal awareness, and economic and psychological burdens. In Japan, where prolonged waiting periods for heart transplants are inevitable, these challenges further exacerbate the economic and psychological burdens on both patients and caregivers. We present the case of a patient with an LVAD who expressed the desire to return to employment after receiving psychological counseling, and discuss the specific outcomes and challenges of employment support. A multidisciplinary team, including physicians, psychologists, and employment specialists, developed an individualized support plan. This led to successful steps toward social reintegration, which was accomplished in collaboration with the workplace. This case highlights the importance of early intervention during the heart transplant waiting period, specifically the LVAD implantation period, along with continuous psychological, economic, and employment support to improve quality of life post-transplant. Establishing a coordinated support system that involves healthcare providers, employers, and local communities is crucial for the successful social reintegration of patients with an LVAD. Specific measures, such as regular mental health counseling and flexible employment arrangements, are essential to achieving this goal.

Heart transplantation is a valuable treatment option for patients with advanced heart failure.¹ In addition to improving prognosis and alleviating heart failure symptoms, heart transplantation facilitates a patient’s social reintegration.²^,³ In Japan, due to a shortage of donors, patients are required to wait approximately 5 years, during which they must be supported by a left ventricular assist device (LVAD).⁴ The primary indication for LVAD implantation in Japan is ‘bridge to therapy’, requiring caregivers to provide physical care 24/7.⁵ Nevertheless, the exact employment rate of patients with LVAD in Japan remains unclear. Caregivers, who must provide round-the-clock physical and emotional support, face significant challenges, including job loss and financial strain, which are compounded by the prolonged waiting period for transplantation. International reports have suggested that employment rates for patients range from 0% to 17%, with over 50% of caregivers losing their jobs during this period.⁶^–⁹

This highlights the significant time and the financial and psychological burden imposed on both patients and caregivers during the prolonged waiting period for heart transplantation.¹⁰ Therefore, it is essential to identify the social determinants of health affecting both patients and caregivers and to develop appropriate countermeasures.¹¹^,¹² To achieve comprehensive social reintegration, including resuming employment post-heart transplantation, a seamless approach is required. This approach must consider the patient’s life after heart transplantation, starting from the point of LVAD implantation or even earlier.

Case Presentation

Patients often face difficulties with comprehensive social reintegration, including returning to employment, due to the long-term nature of heart failure treatment and the challenges posed by the device itself. We present the case of a 60-year-old patient with an LVAD who lost his job due to severe heart failure and received over 20 years of home care before receiving LVAD implantation. During the waiting period, his caregiver also lost her job, compounding the family’s financial and emotional stress. Through outpatient psychological counseling, the patient expressed a desire to return to employment, and a multidisciplinary team developed a support plan for employment. Several challenges were identified, including a lack of social awareness of LVAD, caregiver burden, and the patient’s request to work near home. In response, Kagawa University Hospital multidisciplinary team conducted on-site lectures and practical training for staff. As a result of this effort, understanding in the workplace improved, and they are now considering accepting a new patient with LVAD in the future. This marked the patient’s return to employment after 20 years, highlighting the potential transformative impact of tailored support. Furthermore, the caregiver was also employed at the same workplace, allowing them to share the same environment and spend time together.

This case exemplifies the employment and life-support challenges faced by patients with LVADs. A comprehensive approach to support is required, not only considering the patient’s will, but also the caregivers’ will, the support of workplaces, and the assistance from healthcare and financial systems, as various factors are involved. We explore the specific factors necessary for supporting the balance between treatment and social reintegration.

Stakeholders

Supporting patients in returning to employment requires the cooperation of various specialists.¹³^,¹⁴ In addition to physicians and nurses, supporters, vocational rehabilitation specialists, and clinical psychologists are involved. Caregivers focus on providing support for daily living and medical care within the home. However, in Japan, the LVAD Council defines ‘supporters’ as individuals responsible for assisting patients in the workplace.¹⁵ These supporters are not caregivers, but they undergo training to handle emergency situations and are asked to provide support during such instances.

While this training is voluntary, without workplace supporters, it is challenging for patients to return to employment. From the perspective of companies, employing people with disabilities offers several benefits, including achieving the legally mandated employment rate, improving corporate image, and enhancing employee morale and productivity through task distribution.¹⁶ However, there are significant concerns about equipment malfunctions and complications, and if there is only one supporter, the absence of that supporter due to vacation or other reasons may cause the supporter to feel stressed, worrying that the patient may be unable to work. To prevent a single supporter from bearing the entire burden, it is important to cultivate multiple supporters to distribute the psychological stress. Vocational rehabilitation specialists play a crucial role in evaluating a patient’s vocational suitability, developing employment plans, selecting appropriate workplaces, and adjusting the work environment to facilitate employment. Indicating that the patient’s vocational life is determined by the decisions made by these specialists is not overstated. These professionals can categorically address concerns about working while wearing an LVAD. During the employment process, some patients are unable to attend meetings with the employer or occupational physician. In such cases, the specialist must act as a representative, conveying accurate information about the LVAD and necessary considerations. Furthermore, regular follow ups are required after employment to continuously evaluate the patient’s compatibility with the workplace.

Clinical psychologists are also involved as key points of contact for addressing patients’ psychological concerns, including those related to returning to employment.¹⁷ They share the patient’s situation with the multidisciplinary team at the hospital, playing an important role in determining the direction of employment-support activities. Additionally, peer support, where patients with similar experiences share their concerns and find solutions, is crucial.¹⁷ Patients often act within limited spaces and interact with a small number of people in their daily life, making it difficult for them to learn about other patients’ coping strategies or experiences. Peer support is also important for caregivers, allowing them to share their unique concerns. Peer support functions as a psychological support mechanism, where patients with an LVAD and caregivers can empathize with each other regarding the challenges they face in the workplace and daily life.

Although statements on return-to-work support for patients with heart disease and multidisciplinary team activities have been issued internationally, sufficient activities are not yet in place.¹⁸ Medical reasons account for only a small portion of the causes behind failed vocational rehabilitation support or its retention; psychological and social factors are more critical.¹⁸ For example, in Denmark, data on patients with acute coronary syndrome shows that although early return to work can be achieved, one-quarter of patients are no longer employed 1 year after the onset of illness.¹⁹ In the United States, the Vocational Rehabilitation Services program provides employment support for individuals with disabilities, and in some cases, this program has been successful. However, there are no reports of its use for patients with an LVAD. Long-term support for maintaining employment has become an important area of concern for multidisciplinary heart failure teams.

Overall, supporting patients with an LVAD in returning to employment requires the collaboration of multiple stakeholders, including caregivers, physicians, nurses, vocational rehabilitation specialists, clinical psychologists, and workplace supporters.²⁰ Moreover, support for patients should not be limited to a specific moment, such as returning to or starting a new job, but should focus on creating programs that allow patients to maintain long-term employment. This will be a key challenge for future multidisciplinary teams.

Comprehensive Health Care

To provide comprehensive support, regular and continuous mental health care is essential.²¹ At Kagawa University Hospital, we allocate 30 min each for both patients and caregivers during the waiting time for outpatient visits to conduct psychological counseling. During this time, we offer follow-up sessions aimed at alleviating the psychological burden of patients and reducing the stress of caregivers.

Adverse events associated with LVAD include bleeding complications, infections, stroke events, transient ischemic attacks, device thrombosis, electrical failures, right heart failure, and arrhythmias.²² Anxiety related to physical complications is commonly observed shortly after LVAD implantation. Patients tend to exhibit mental health issues such as depressive symptoms and anxiety disorders over time after the implantation.²³ Outpatient care for patients with an LVAD primarily focuses on physical examinations and medical device management, and mental health is rarely integrated into the medical care system. Mental health significantly impacts patients’ quality of life (QOL) and long-term outcomes,²⁰^,²⁴ making regular mental health support essential.

Despite this necessity, psychological counseling is currently conducted on a self-pay basis. Recent revisions to the medical fee schedule have enabled reimbursement for counseling in certain conditions, but cardiovascular diseases, including having an LVAD, are not yet covered.²⁵ In rural areas, psychosocial counseling services are less accessible compared with urban regions due to limited medical resources, longer travel times, and higher costs. Introducing online psychosocial counseling services could be a promising solution to address these challenges. A study on telemedicine has shown that its use did not result in differences in patient satisfaction across regions, indicating its potential to reduce regional disparities in healthcare access.²⁶ This suggests that telemedicine, including online psychosocial counseling, could serve as a valuable tool for promoting equitable access to care, regardless of the region. By reducing both time and financial burdens, online psychosocial counseling may also provide more consistent psychological care for patients with an LVAD and their caregivers. However, issues such as privacy protection and access to stable Internet connections must be addressed to ensure equitable and effective implementation. Expanding reimbursement policies to include psychological counseling for patients with an LVAD would address this gap and improve care.

Furthermore, mental health support should not only be extended to patients but also to caregivers. While patients often experience improvements in QOL after LVAD implantation, caregivers tend to face social constraints and show limited improvement in their own QOL.²⁷ Survival rates and complication rates of patients with an LVAD in Japan are superior to those of such patients in other countries.²⁸ One factor contributing to this success may not only be the level of medical care but also the degree of caregiver burden in each country. In particular, Japan is the only country that mandates a caregiver for patients with an LVAD, and the physical and psychological burden on caregivers is immense.⁵ To address these challenges, continuous mental health support that adapts to changes in the living environment before and after heart transplantation is essential for both patients and caregivers.

Therefore, ensuring good health of the patients and caregivers is essential for the initiation of effective employment support. Currently, outpatient care and LVAD management fees are focused on physical care. It is important to make psychological consultations a mandatory part of outpatient care programs and to revise LVAD management fees to incorporate mental health support (Figure).

Figure.

Key components for supporting patients with left ventricular assist devices (LVADs) and caregivers. Stakeholders: strengthening support systems through collaboration among multidisciplinary teams and related organizations. Comprehensive health care: initiatives to maintain the mental health of both patients and caregivers. Workplace integration: adjusting workplace environments and providing flexible work arrangements. Financial assistance: providing support to enable economically stable living. Awareness and training: promoting societal understanding and acceptance of patients with LVAD.

Workplace Integration

Flexible employment arrangements are necessary for both patients with an LVAD and their caregivers. In Japan, equal employment opportunities are provided under the Act on Employment Promotion of Persons with Disabilities and the Basic Act for Persons with Disabilities. Internationally, in the United States, disability employment is regulated under the Americans with Disabilities Act.²⁹ These legal frameworks highlight the importance of establishing tailored approaches to employment that meet the needs of patients with an LVAD.

To employ these patients, making adjustments to the work environment and selecting appropriate supporters are necessary. Companies also have several concerns regarding the employment of people with disabilities. The most significant concern cited was workplace adaptation for employees with disabilities. Additionally, a lack of understanding among employees without disabilities was identified as another challenge.¹⁶ Furthermore, small and medium-sized enterprises have highlighted the costs of facility adjustments as a barrier to employing people with disabilities.¹⁶ These adjustments require not only financial resources but also manpower, placing a significant burden on employers.³⁰ Despite these challenges, employer support is indispensable. Due to considerable anxiety about potential device malfunctions, some employers may prefer offering less-demanding tasks to avoid the stress of employing individuals with disabilities. Employment rates for individuals with disabilities are typically based on physical disability levels, but for patients with cardiovascular diseases, including those with an LVAD, efforts to promote employment do not succeed in some cases due to their unique conditions. At Kagawa University Hospital, we have also seen cases where such concerns prevented patients from securing employment.

For patients with an LVAD, unemployment can significantly impact their social reintegration and financial stability after heart transplantation.³¹ Prolonged unemployment can reduce post-transplant social reintegration rates.³² Internationally, only approximately 20% of individuals who have been receiving disability pensions for more than 6 months return to employment.³³ Depending on the type of job, employment of patients may be difficult, and searching for work in a new field can independently pose a challenge to social reintegration.³⁴ Since patients need to raise funds for the heart transplant, it is essential for them to secure employment as early as possible after LVAD implantation, but the nature of LVAD imposes physical restrictions. Transportation challenges are another important issue when selecting an area to live or a workplace for patients. Patients are required to live within a 2-h range of the medical facility, but good transportation access is not always guaranteed in residential areas. In some regions, private cars may be the only available means of transportation. This not only limits access to healthcare facilities but also significantly narrows employment opportunities. Patients in rural areas may find it difficult to commute to work, as suitable workplaces are often located far from their homes or lack accessible transportation options. Additionally, patients who are required to relocate near an LVAD facility often face the dual burden of finding new housing and seeking employment in an unfamiliar location. Relocation disrupts their established social and professional networks, adding significant stress to their daily lives. These constraints make it challenging to maintain both employment and regular medical follow ups, further complicating their social reintegration.

To overcome this barrier, it is necessary to explore employment options that minimize the burden on both patients and companies, such as desk work or remote work.⁸ The successful return of multiple patients with an LVAD to the same company where they previously worked, which could serve as a valuable reference for other companies, has been reported in Japan. Sharing successful outcomes could contribute to strengthening employment-support systems for patients with an LVAD.³⁵

Caregivers also face challenges, as many are forced to leave their jobs to care for patients. This is particularly significant for patients with an LVAD, as their caregivers often play a vital role in managing medical needs and ensuring adherence to treatment schedules. International reports indicate that the unemployment rate for caregivers exceeds 50%.⁹ When unemployment affects not only patients but also their caregivers, it can severely disrupt daily life. Therefore, it is important to propose work arrangements that consider the burden on caregivers while also ensuring fairness in income distribution.

Therefore, flexible working arrangements should be established for both patients and caregivers, and employment criteria should not only be based on physical disability grades but also on organ-specific conditions to provide equal employment opportunities. Such arrangements would not only support patients and caregivers in maintaining employment but also help mitigate the financial and psychological stress associated with managing LVADs. Additionally, measures must be taken to prevent profit loss for companies that employ such patients (Figure).

Financial Assistance

Employment support for patients with an LVAD is essential for securing a stable income. Heart failure treatment, including that for patients with an LVAD, imposes a significant financial burden on households due to medical expenses and living costs.³⁶ Therefore, achieving economic stability through returning to employment may be a crucial factor in improving the QOL for patients. While maintaining social connections is also an important factor, ensuring financial stability remains an unavoidable challenge in daily life.

Although heart transplantation involves significant costs,³² medical expenses, including those related to LVAD implantation, are covered under the Welfare Act for Persons with Physical Disabilities and the Severe Mental and Physical Disabilities Medical Expense Subsidy Program, both overseen by Japan’s Ministry of Health, Labour and Welfare.³⁷^,³⁸ Additionally, patients with an LVAD are eligible to receive disability pensions, which provide a certain level of income.³⁹ When combined with the caregiver’s income, this generally allows them to maintain a stable daily life.

However, after heart transplantation, as cardiac function is fully restored, patients lose their eligibility for disability pensions, resulting in a loss of income. Considering the potential challenges of employment during the LVAD implantation period, it may be necessary to extend eligibility for disability pensions for up to 2 years after the transplant date. Such an extension could alleviate financial anxiety in the early post-transplant period and provide patients with the time needed to secure stable employment. These measures are expected to contribute to improving the QOL for patients (Figure).

As previously mentioned, caregivers may lose their jobs due to caregiving responsibilities, but there are also cases where caregivers retire due to their own health issues.⁶ The goal of heart transplantation is to enable a richer daily life. However, if both the patient and the caregiver become unemployed, their QOL during the waiting period for LVAD implantation may decline, and their risk of facing financial hardship even after the transplant is high. It is crucial to secure a stable income as early as possible after LVAD implantation, while also preparing for life after the transplant. To prevent such difficulties, comprehensive support must address both patients’ and caregivers’ financial stability. This includes securing a stable income for patients early in the LVAD implantation process and providing tailored economic support for caregivers throughout the treatment journey.

Healthcare providers must focus on employment support that considers economic and employment assistance both before and after heart transplantation. By prioritizing both financial stability and employment opportunities, providers can help ensure a smoother transition to life after transplantation for both patients and their caregivers.

Awareness and Training

Support from the general public is essential for employment assistance for patients with an LVAD. To achieve this, awareness-raising activities that include increasing recognition of the disease are indispensable.⁴⁰ Additionally, sharing successful examples of companies that have supported patients returning to work can contribute not only to educational activities within and outside companies but also to fostering understanding of return-to-work support and establishing support systems.³⁵ Disseminating information about the positive impacts of employing people with disabilities, including improved employee morale and corporate image, is critical. Such efforts can help reduce hesitations and foster a broader understanding of the benefits of inclusive workplaces.¹⁶

From LVAD implantation until discharge, hospitals provide guidance aimed at preparing patients for home care. However, we suggested that post-discharge support from the local community and cooperation from the general public play a critical role in the patient’s social reintegration.³^,⁶ Without sufficient awareness, even if patients wish to return to employment, it may take time to create a supportive work environment due to a lack of understanding of LVAD among employers and colleagues. Consequently, delays in providing work–life balance support may negatively affect the patient’s motivation to return to employment, further complicating their social reintegration. To address these issues, Japan’s Basic Plan for the Promotion of Measures Against Cardiovascular Diseases promotes awareness activities for the general public, highlighting their role in supporting employment assistance.⁴¹ As patients with LVADs become more active outside the hospital and home, the likelihood of emergency situations increases. Therefore, specialized training for emergency medical personnel on LVAD-specific issues is essential. In particular, understanding cardiopulmonary resuscitation (CPR) techniques in patients with an LVAD and the associated risks of device damage is crucial. A recent report highlights the complexity of managing these patients during emergencies and emphasizes the importance of targeted training for local fire departments and emergency medical services.⁴² Such training facilitates the sharing of critical information on patient transport, CPR protocols, and other emergency response measures, thereby fostering an environment where patients can safely participate in daily activities.⁶

Education about LVAD extends beyond medical knowledge and includes aspects such as device management, nursing care, and workplace assessments. Therefore, it is desirable for education activities to be conducted by a multidisciplinary team. While employment support involves the cooperation of various stakeholders, the foundation of such support lies in respecting the wishes of the patient and caregiver and collaborating with healthcare professionals. This forms the starting point for employment support. By sharing their vision of post-transplant life with healthcare providers, patients and caregivers can find motivation to move forward. It is also essential to inform patients that employment and social activities are possible after LVAD implantation.

Conclusions

Patients with LVAD have severe cardiac dysfunction. However, when treated as a bridge to transplantation, their disability may be resolved in the future after heart transplantation. These patients represent a ‘rare’ group of individuals with disabilities because their disability can disappear, and they can contribute to society as full members. To ensure a smooth social reintegration after transplantation, it is essential to provide employment support and related assistance from the time of LVAD implantation. In the process of enhancing social reintegration and QOL for patients, caregivers also become crucial recipients of support. This review highlights the psychological, economic, and social challenges faced by both patients and caregivers, emphasizing the importance of comprehensive and continuous employment support to assist them. Caregivers are not merely supporters, they are also individuals who require employment support to improve their own QOL.

In the future, it will be necessary to strengthen medical and social employment support systems to address the issues faced by both patients and caregivers, ensuring uninterrupted support from the waiting period for transplantation through to post-transplant life. This will enable both patients and caregivers to confidently reintegrate into society and maintain better QOL.

Acknowledgments

We express our sincere gratitude to Practical Education of Advanced Heart Failure and Heart Transplantation in the Department of Cardiovascular Medicine, Osaka University Graduate School of Medicine, and Dr. Matsunaga at Kagawa University Hospital for valuable support in the preparation of this manuscript.

Sources of Funding

No funding was received for this research.

Disclosures

The authors declare that there are no conflicts of interest.

IRB Information

Not applicable for this study.

Data Availability

All data generated or analyzed during this study are provided within the article, and no additional source data are available.

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