Developing Expertise and Closing the Gap: Advanced Heart Failure Patients and Palliative Care
Summary
This fellowship was for the fellow, a nurse in the St Joseph’s Hospital Heart Failure Clinic (SJ HFC), to become educated about a palliative approach to care and goals of care (GoC) conversations as well as improve and solidify a referral pathway between SJ HFC and palliative care (PC) services.
Heart failure is a progressive and incurable disease which affects over 600 000 Canadians. In late stages, heart failure patients require increasingly more healthcare resources and typically present frequently to Emergency Departments and require hospital admissions related to heart failure symptoms. The majority of patients referred and accepted by SJ HFC are in the advanced stages of heart failure, typically classified as American Heart Association (AHA) Class C or D, New York Heart Association (NYHA) Functional Class III-IV and generally having had 1-2 heart failure hospital admissions in the preceding 6 months. Many of these patients are in their last year or two of life when first referred to the SJ HFC. It is acknowledged in the literature that having early GoC discussions and facilitating early referrals to specialty PC services creates a positive impact for patients and can relate to improved quality of life and reduced hospital admissions. Considering this, there is a need for SJ HFC clinicians to be skilled and comfortable in discussing patient wishes and GoC as well as a clear referral pathway to specialty PC services.
As a result of the way the SJ HFC clinic has been developed, it is a primary touchpoint for patients and a close healthcare provider-patient relationship is developed with the nurse practitioner (NP) and registered nurse (RN) staff. These relationships are pivotal for the patient and rewarding for the healthcare staff. Thus, SJ HFC staff are in a good position to initiate and set the tone for sensitive GoC discussions as a high degree of patient-healthcare provider trust exists. In this way, when the topic is put forth in a sensitive manner, it can have far-reaching implications for the patients’ understanding of their condition and acceptance of potential trajectory over the coming months or years.
The overarching goal for this fellowship was to strengthen skills and knowledge around effective content and timely delivery of GoC conversations as well as improve the timing and content of the referral process between the SJ HFC and specialty PC services. The overall effect of this fellowship will be improved patient care during a pivotal time in the patient’s heart failure journey.
In my reading and research in preparation for the fellowship proposal, combined with the formal education that I undertook as part of my learning goals during the fellowship, I gained an immense appreciation for the importance of clinicians initiating GoC conversations with patients who have a life limiting illness. As part of the fellowship, I expanded my understanding of the purpose and significance of these conversations from a holistic patient care perspective. I learned about the palliative approach to care, which is indicated for clinicians who serve patients with a life-limiting illness. The formal education that I undertook provided me with various GoC conversation frameworks which will continue to support and structure the patient interactions in my nursing practice. The message that stood out to me was that GoC discussions are about discovering what is important to the patient so that clinical decision making can be aligned with those wishes.
In reaching out to a random sample of other Heart Failure Clinics within Ontario, I learned how they carry out GoC conversations and what triggers a specialty PC referral. This was useful in contributing to the beginnings of a SJ HFC – PC Pathway that will ultimately inform and direct SJ HFC clinicians as to appropriate timing of PC referrals for our patients.
Through what I learned formally and informally from discussions with other HF clinicians, I decided upon appropriate materials to implement in the SJ HFC to support clinicians in gaining an overview of where an individual patient is on the heart failure disease trajectory. In addition, implementing enhanced patient education tools was accomplished in order to encourage questions and discussion from patients.
Outcomes
SJ HFC patient outcomes related to this fellowship include the commencement of more frequent GoC conversations and more clear communication and education about the progressive and life-limiting nature of heart failure. While this may not seem positive, it is known that having clear and honest communication with patients about their GoC relieves suffering and anguish as the heart failure disease process progresses. This, in turn, decreases patient and caregiver anxiety and distress which can decrease ER and inpatient hospital utilization.
Activating earlier referral to specialty PC services to guide supportive care alongside active medical care is of great benefit to patients. This patient outcome was achieved by strengthening the relationships, improving the communication and increasing the visibility of PC services available to the SJ HFC.
The implementation of both patient and clinician education and resource tools within the clinic have assisted and supported initiating effective and compassionate conversations about disease trajectory with patients. There were four educational and resource tools implemented, including: an educational poster in the SJ HFC clinic rooms; a second reference page in the patient’s physical SJ HFC chart to demonstrate information pertaining directly to disease trajectory; a conversation and resource guide reference page placed in the clinic rooms; and a SJ HFC – PC referral pathway.
I have acted as a resource and conduit for the formal education that I undertook as part of the fellowship. SJ HFC nursing staff were presented with a summary of the learned frameworks and skills regarding having effective GoC conversations with patients. SJ HFC staff were very receptive to learning about a palliative approach to care and have been supportive and open to the proposed tools that have been implemented in the clinic. This has been of great benefit to myself and my colleagues as well as the patients that we serve. As well, I have provided and made available various resources regarding GoC conversations and PC to my colleagues within the SJ HFC.
The beginnings of a more formalized referral pathway between the SJ HFC and PC services have provided more clarity and guidance within our clinic as well as between SJ HFC and PC groups. PC services, as stakeholders in this process, have been involved with reviewing the pathway and providing feedback. There will continue to be feedback and revisions in this regard until the pathway has been finalized.
The work involved with this fellowship serves to exemplify and put into action some key St Joseph’s Healthcare Strategic Plan Priorities, including Connecting Care and Empowering People. Care was connected over two services, the SJ HFC and PC services through more frequent and focused connections and meeting. Clinical staff and patients were empowered to discuss and address heart failure disease trajectory, where a patient is on that trajectory and what that means for how to manage their symptoms and estimated remaining time. This helped patients to feel more personal control over what they are experiencing and avoid unnecessary procedures, ER visits and hospital admissions. Further, this fellowship fulfilled SJHC Organizational values of Listen, Learn and Care.
Overall experience
This fellowship was very meaningful to me as I learned new material about the heart failure disease trajectory; the palliative approach to care; my nursing practice; and about myself on a personal level. The formal education that I undertook was well presented and effective in providing theory and frameworks for important clinician-patient conversations. I will continue to use these frameworks throughout my nursing career.
The connections that I sought out with other heart failure professionals within Ontario were illuminating, rewarding and uplifting. Shortly after I began working as an RN in the SJ HFC, the Covid-19 pandemic hit and with that, any hope of attending conferences or workshops in the usual in-person manner. That meant that the networking which would normally occur in person did not eventuate. I had not realized how important and worthwhile it is to connect with other heart failure nurses and physicians. I was very pleased with the well-thought out and friendly responses to my enquiries.
There were many highlights that stand out for me: participating in educational classes that were both interesting and interactive, despite being virtual; preparing for patient discussions that were going to be challenging but rewarding; having a PC physician shadow in the SJ HFC for a half day clinic; presenting to my colleagues; and overall taking action to learn and implement strategies around how I and my colleagues can better serve the patients in our clinic.
In summary, the fellowship was a fantastic learning opportunity – I learned a lot about myself, heart failure and particularly about our patient demographic and how to serve them better. I made important connection both within and outside SJHC. I feel encouraged and supported to continue this valuable and important work. Overall, it has brought be to a new perspective to the importance of a therapeutic nurse-patient relationship and the powerful meaning of listening.
