Case Studies
Case studies showcase real-world applications of policies and innovations, offering insights into improving outcomes and efficiency. They enhance problem-solving skills, highlight best practices, and engage through storytelling for education and transparency.
Interest(s): Advanced Practice Professionals, Cultural Perspectives, Diversity, Equity and Inclusion, Emerging Technology, Ethics, Growth in Transplantation, Immunosuppression / Transplant Pharmacology, Innovation, Patient Education / Healthcare Literacy, Patient Safety, , Quality Assurance and Performance Improvement (QAPI), Transplant Financial Coordinator, Transplant Nutrition, , Waitlist Management
Organ(s): Heart
Patient Group(s): Adult
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Beyond Survival: Integrating Personal Goals into Durable VAD Management
Heather
Jaeger
, University of Wisconsin Health
The Challenge
Ventricular assist device (VAD) patients face complex and evolving health challenges that increase their risk for diminished quality of life as early as the first year after implantation. As part of the pre-implant evaluation, patients and families are encouraged to consider whether VAD therapy, and its significant lifestyle implications, aligns with their values. Following implant, discussions have centered on transplant eligibility, as most VAD patients were bridged to transplant. However, after the October 2018 OPTN heart allocation policy change, the VAD population shifted toward older, more medically complex patients less likely to receive a transplant. VADs are now more often used as destination therapy, requiring a new framework for long-term support.
Despite this shift, structured conversations about what patients define as meaningful quality of life, beyond survival or transplant candidacy, have not been routinely integrated into longitudinal care. The goals expressed during the acute pre-implant phase can evolve once patients adjust to life with a VAD. This highlights the need for proactive, ongoing engagement to ensure care remains aligned with patient-defined values and goals.
All VAD programs collect patient-reported quality of life (QoL) data using the Kansas City Cardiomyopathy Questionnaire (KCCQ), a validated tool measuring the impact of heart failure and its treatments. In our program, low KCCQ scores triggered referrals to social work for reactive, issue-specific support. Patients are both destination therapy recipients and transplant candidates with barriers such as obesity, substance use, or inconsistent adherence. While providers documented stepwise goals for patients pursuing transplant, personal quality of life goals, such as traveling or engaging in meaningful activities, were rarely elicited or recorded. Instead, efforts focused on clinical targets like smoking cessation or weight loss, which, although important, did not reflect the broader scope of what mattered to patients.
In spring 2024, our program recognized quality of life as a broad, multidimensional concept that encompasses emotional, social, spiritual, and functional well-being. We launched a project to support patients in identifying and documenting personal QoL goals, improve communication across the care team, and guide short-term planning to help patients work toward these goals. This approach aims to shift the model from reactive interventions to
proactive, goal-aligned care that reflects the full lived experience of patients with durable VAD support.
The Approach
In spring 2024, a multidisciplinary team convened to identify how multidimensional patient goal setting could routinely be integrated into outpatient care. Using the 5-Why’s method and a fishbone diagram, the team conducted root cause analysis and identified barriers in three key domains: personnel, process, and documentation.
Personnel: The social worker was identified as the most appropriate lead for goal-setting conversations, given their role in the pre-implant and discharge phases. However, they had limited involvement in the outpatient setting. The team proposed expanding their role to conduct regular follow-up with patients to facilitate goal setting post-discharge.
Process: Due to time constraints during VAD clinic visits, follow-up visits with the social worker were scheduled separately from provider appointments. Follow-up was structured to begin at 3 months post-implant, when patients are more medically stable, and continue at 6 and 12 months, and annually thereafter. This structure allowed focused time for patients and social workers to discuss and document goals without disrupting clinic workflow.
Documentation: Prior to this project, there was no designated location in the outpatient medical record for documenting patient goals. The VAD program collaborated with the clinical documentation to align the goal documentation with established standards used throughout the organization within the medical record.
A Goal Setting Worksheet was developed to prepare patients in advance. It included prompts to help identify personally meaningful goals and actionable steps. Patients received the worksheet before their appointment and were encouraged to bring it to the visit. During the visit, the social worker facilitated discussion, helped define next steps, and documented the goals in the electronic health record.
A SMART goal was established to increase documented patient goals from 0% to at least 90% by April 2025. This structured, proactive approach was designed to embed individualized goal setting into routine care and shift the model from reactive to anticipatory support.
The Results
Implementation of structured goal-setting visits led to measurable improvements in patient-centered care for individuals living with durable VAD support. Social workers are now consistently engaged in the ambulatory setting, facilitating meaningful conversations that help patients define and pursue personal QoL goals. These goals are documented in the outpatient medical record, providing visibility to the entire multidisciplinary team and supporting more coordinated, individualized care.
Since implementation, patients have not only identified meaningful goals, such as traveling, returning to their hobbies, resuming volunteer work, or reconnecting with family, but have begun to achieve them. Many patients have gone on to set new goals. This progression reflects how patient goals evolve over time and underscores the importance of ongoing follow-up to maintain alignment between care and lived experience.
The consistent inclusion of social work in the post-implant phase has helped shift the culture of VAD care from primarily medically focused to more holistic and patient driven. Providers have reported increased awareness of patient priorities, which has influenced clinical decision-making, discharge planning, and communication with caregivers. Patients, in turn, have expressed feelings of being seen and supported in ways that extend beyond symptom control.
Quantitatively, the percentage of patients with a documented goal rose from 0% at baseline to 21% at three months and 43% at six months. The program exceeded its SMART goal in February 2025, with 93% of patients having at least one documented goal.
Insights & Lessons Learned
Early qualitative feedback indicates that structured goal-setting conversations have provided patients with a valuable space to express fears, clarify values, and connect daily health behaviors, such as medication adherence and dietary changes, to broader personal goals. The Goal Setting Worksheet has been instrumental in enhancing patient engagement by offering a tangible tool for reflection and preparation, fostering active participation in care planning. Patients reported feeling encouraged, motivated, supported, and empowered, expressing that the time with social workers helped them feel involved in their care and assured that their voices were heard. Although no baseline survey was conducted, the positive response suggests meaningful benefit and a desire to continue these visits.
Clinicians reported improved understanding of patient needs by leveraging social workers in this expanded role. Of note, some patients who reported poor quality of life on the KCCQ were not open to discussing personal goals during visits. This remains a key opportunity for the team to develop new strategies to engage and support these patients more effectively.
A key lesson learned was the power of intentionality—selecting the right team members to champion this work and designing a structured, repeatable approach to ensure that no patient’s voice is lost in the complexity of care. Pre-visit checklists and coordinated oversight were essential in creating a culture of consistency, accountability, and connection.
Though this model was initiated in the VAD population, its principles transcend diagnosis. With the support of dedicated social work engagement, personalized goal setting can be seamlessly integrated into the care of organ transplant recipients and other patients facing complex, lifelong conditions. By creating space for patients to articulate what truly matters to them, we shift from simply delivering care to co-producing it—resulting in more meaningful encounters, strengthened trust, and a deeper alignment between medical plans
and human priorities. This approach not only enhances quality of life but reinforces the very purpose of healing work: to see the whole person behind the diagnosis.