Clinical training for improving integration of a palliative care approach into heart failure management
Summary
Southlake Regional Health Centre (SRHC) is a 500 bed university-affiliated teaching and research acute care hospital, offering advanced cardiac and cancer care. Located in Newmarket, the SRHC Heart Function Program (HFP) provides care to over 3,000 patients per year through seamless inpatient and outpatient services. Their interdisciplinary team model focuses on optimizing patients living with heart failure (HF) via guideline-medication titration, teaching and self-monitoring support, and assessment for advanced HF therapies. The heart failure nurse practitioner (HF-NP) role is an integral point of contact for patients during critical transitions in care, such as during exacerbations, hospitalizations, and at end-of-life (EOL).
Heart failure is a life-limiting illness resulting in a high symptom burden, functional limitations, decreased quality of life (QOL), and a high use of health care services. Patients and families diagnosed with HF present with a unique set of needs related to the unpredictable disease course, characterized by periods of stability interrupted by exacerbations, sudden death, and noncardiovascular illnesses. They require support regarding self-management, illness understanding for medical optimization, adaptations for disability, and complex decision making regarding advanced HF therapies (i.e. implantable defibrillators, mechanical circulatory support, and inotrope infusions). Palliative care (PC) aims at improving QOL through expert-level symptom management while ensuring that treatment decisions align with patient and family values. Many PC principles, such as communication, complex symptom assessment and management, and advanced care planning benefit patients with HF, however a paucity of evidence and guidelines provide explicit direction in their integration.
The purpose of the clinical fellowship was to provide a HF-NP with the opportunity to apply PC knowledge acquired during previous didactic training into practice. Through experiential learning, the HF-NP could identify opportunities to integrate PC principles into inpatient and community HF care. The fellowship provided the HF-NP with PC and EOL education training and exposure to alternative site models. These experiences helped to conceptualize the application of PC approaches in advanced, end-stage HF and allowed the fellow to learn from different practice patterns between centres. The final outcome of the fellowship was the develop of a symptom management clinic embedded into the existing HFP.
The overall learning goal of the fellowship was to apply and practice palliative care (PC) skills in communication, assessment, and symptom management in order to incorporate these competencies into routine HF management. Detailed PC competencies are outlined in the American Association of Hospice and Palliative Care Medicine Core Competencies document. This fellowship provided an opportunity for knowledge translation into practice. Skills developed include communication strategies specific to difficult conversations, such as advanced care planning and goals of care clarification; performing comprehensive symptom assessments, including use of screening and diagnostic tools to gather information about clinical symptoms and disease progression; applying evidence-based therapies to complex symptom management; and, identifying local interventions for end-of-life care.
The inpatient setting introduced communication strategies for uncertain prognostication and goals of care clarification, principles of symptom management, and treatment of imminent death and postmortem care. I took on the role of a medical learner within the PC team and applied these skills during clinical consultations. I also developed my pharmacotherapy approach to pain management. Prior to the fellowship, I had limited understanding about opioid prescribing. Through mentorship and exposure, I was able to practice principles related to opioid initiation, titration, and rotation. I feel confident employing a multi-modal approach to acute and complex pain syndromes, in addition to supporting and educating patients and families on appropriate use of pain medications. During this rotation, I also spent time at the hospice. This experience helped to identify common signs of the normal dying process and to be able to describe their management to patients and families.
During my outpatient rotation, I continued to improve my communication strategies around transitions in care and changes in disease trajectories. This helped to develop skills in advanced care planning. I continued to improve my non-pain symptom management skills in this setting. It was at this time I also appreciated the significance of a multidisciplinary approach to care with PC physicians, NPs, symptom relief nurses, and psychosocial supports. Front line community PC provision allowed me to better understand the challenges of home care in order to counsel patients and families during these transitions.
Outcomes
Patients and families of the SRHC HFP can anticipate receiving improved access to early evidence-based PC as it relates to their HF and other life-limiting illnesses because of this fellowship. Our HFP has increased its awareness about patients who benefit from a PC approach by adapting referral criteria for comprehensive assessments and comfort focused treatment plans. This ensures more patients have a documented advanced care plan and are referred to local community hospice and PC services early in their disease trajectory. I have also incorporated the use of the Edmonton Symptom Assessment Score (ESAS) into patient assessments for symptom benchmarking and regular reassessments with treatment changes. This has served as an important scale for symptom reporting as it related to disease progression and can serve as an outcome measure for future research.
My experiences and observations have expanded my understanding of an integrated PC approach and how this benefits the unique and complex patients attending our hospital and clinic. Through various networking, I continue to build a supportive network of on-call providers (i.e. nurses, nurse practitioners, physicians, social workers) to which I can contact for consultation or for patient referrals. This allows for timely assessments and transitions in care. I have a greater appreciation for the use of PC therapies and their interactions with guideline-directed HF treatments, facilitating a unique combined pharmacotherapy approach to HF symptom management.
In my experience with direct patient care with active HF and those entering EOL, I am also able to provide continuity of care and familiarity. Patients and families have self-reported higher satisfaction with care knowing that they are working with one provider throughout their hospitalizations, clinic visits, and transitions home or to alternate levels of care. This has also resulted in a deep personal job satisfaction where I have formed strong therapeutic relationships with patients and their families. Furthermore, I have integrated my off-site experiences from the North York General Hospital Supportive Cardiology program and Mount Sinai Palliative Care service into our HFP. This has produced helpful written resources for patients, including the "Coping with Advanced Heart Failure" booklet for patient education.
Novel understanding of non-malignant palliative care (PC) principles as it applies to HF management is increasing within the HFP. My fellow cardiologists and HF nurses recognize this training as an important step in creating increased collaborative practice with the PC team at SRHC. I have since become a liaison between the cardiology and PC teams to improve patient access to appropriate specialist care. This has resulted in increased interprofessional communication and real-world application of the PC Bowtie Model. I continue to provide PC education as it relates to HF and chronic disease management to my colleagues and community partners. I have had the opportunity to present at our organizational education grand rounds, PC physician education rounds, and PC symptom relief and case coordinator rounds. Colleagues and staff within our organization are welcome to attend these rounds for medical education and opportunities for case-based discussions. I have also been invited to speak externally at upcoming primary care physician updates, Mount Sinai PC rounds, and the Muskoka Palliative Care Network conference in April 2020. These are exciting opportunities to be recognized as a HF specialist and PC leader to advocate for care integration and bridge gaps in practice.
Overall, the fellowship has allowed for improved access to efficient and equitable PC provision for patients living with HF. This strategically aligns with our organizational values and goal to champion a culture of exemplary care and deliver clinical excellence. Interventions aimed at upstream PC approaches aim to broaden provider and public understanding of traditional PC and EOL services thus results in providing the right care to the right patient. Although this has yet to be evaluated, we also presume that this would decrease use of inappropriate acute care services resulting in reduced hospital readmission and lengths of stay.
Overall experience
I am beyond grateful for the learning opportunities and experiences this fellowship has afforded to me. During my clinical training as a nurse practitioner I was overwhelmed by the content and knowledge that was needed for professional development. I was pleased to specialize in heart failure and be able to continue to deliver high quality cardiac care to my community. Heart failure offered the blend of science and art I was always interested in. However, the more I grew as a practitioner, the more needs and gaps I identified; particularly in the areas of symptom management and addressing quality of life. Again, my unease set in. I dwelled on my lack of knowledge about how to best address my patients growing care needs. Not only did this fellowship allow me to develop as a palliative care practitioner, it has also helped me to meet my patients needs with empathy, evidence, and confidence. It has allowed me to build a robust community of support around our Heart Function Program to address the unpredictable challenges of heart failure with certainty. It has also certainly strengthened professional relationships and grown our collegial team.
A few of my favourite moments include spending time with my primary mentor, Karen, in the community, where we were able to collaborate on communal cases - beautifully blending our specialties together. Karen has certainly been a guiding light in this journey, and I look forward to continuing to work with her. My favourite moment occurred when I was nearing the end of the fellowship, and I took on my first independent palliative heart failure case. I hosted a family meeting to discuss a patient nearing end of life. Despite the solemn nature of the patient's situation, at the end I received through tearful eyes such positive reinforcement - "thank you for guiding us so gently; you've clearly done this before". This acknowledgement of my newly acquired skills was profoundly encouraging and these moments continue to grow my passion.