TY - JOUR
AU1 - Lauck, Sandra
AU2 - Garland, Ella
AU3 - Achtem, Leslie
AU4 - Forman, Jacqueline
AU5 - Baumbusch, Jennifer
AU6 - Boone, Robert
AU7 - Cheung, Anson
AU8 - Ye, Jian
AU9 - Wood, David A
AU1 - Webb, John G
AB - Abstract Severe aortic stenosis (AS) is the most prevalent structural heart disease and affects primarily older adults in their last decade of life. If the risk for surgery is high, transcatheter aortic valve implantation (TAVI) is the treatment of choice for many patients with suitable anatomy who are likely to derive significant benefit from this innovative and minimally invasive approach. In a large transcatheter heart valve (THV) centre that offers TAVI as one of the treatment options, of 565 consecutive referrals for the assessment of eligibility for TAVI over 18 months, 78 (14%) were deemed unsuitable candidates for TAVI or higher risk surgery by the interdisciplinary Heart Team because of their advanced disease, excessive frailty or comorbid burden. Concerns were raised for patients for whom TAVI is not an option. The integration of a palliative approach in a THV program offers opportunities to adopt best end-of-life practices while promoting innovative approaches for treatment. An integrated palliative approach to care focuses on meeting a patient’s full range of physical, psychosocial and spiritual needs at all stages of a life-limiting illness, and is well suited for the severe AS and TAVI population. A series of interventions that reflect best practices and current evidence were adopted in collaboration with the Palliative Care Team and are currently under evaluation in a large TAVI centre. Changes include the introduction of a palliative approach in patient assessment and education, the measurement of symptoms, improved clarity about responsibility for communication and follow-up, and triggering referrals to palliative care services. Palliative approach, severe aortic stenosis, transcatheter aortic valve implantation Background Calcific aortic stenosis (AS) is the most common structural cardiac disease, and is caused by the progressive stiffening and immobilization of the valve leaflets. Disease progression causes impaired valve opening, reduced cardiac output, and heart failure. Severe AS primarily affects the elderly, with a reported prevalence of 2.8% among people aged 75 years and older.1,2 Once patients become symptomatic and experience various degrees of angina, syncope, exertional dyspnea and/or severe fatigue, survival in the absence of treatment is reduced to 2–4 years.3,4 Valve replacement is the only effective treatment to provide symptom relief and improve long term survival.5 The decision to proceed with surgical aortic valve replacement (sAVR) is usually determined by valve biological functioning, presenting symptoms, and risk of mortality during cardiac surgery. Increasing age and co-morbid burden are significant independent predictors of post-operative mortality.6–8 For individuals deemed at high/excessive risk for sAVR, transcatheter aortic valve implantation (TAVI) may be indicated. Unlike sAVR, TAVI is a minimally invasive procedure which does not require an open sternotomy and cardio-pulmonary bypass. The procedure employs a catheter-based collapsible stent valve that is deployed in the aortic position while the heart is beating. Access to the aortic valve is most commonly achieved with a femoral artery approach or through a small incision in the chest, and can be performed under general or local anesthesia with an expected length of stay of 2–5 days.9 The assessment of eligibility for TAVI is multimodal and requires the consensus agreement of the Heart Team, usually composed of cardiologists, cardiac surgeons and nurses.10 Patients must undergo multiple diagnostic tests, including echocardiography, cardiac angiography, and computed chest and pelvic tomography, consultations with cardiologists and cardiac surgeons, and a comprehensive functional assessment to determine baseline daily functioning, frailty and quality of life. In partnership with the patient and the referring physician, the Heart Team determines patients’ anatomical suitability for TAVI, and their likelihood to derive significant benefit from the procedure. In addition to answering the question “Can TAVI be done?” the Heart Team must also address the question of “Should TAVI be done?” Eligibility decision in a large TAVI centre Since 2005, the Transcatheter Heart Valve (THV) Clinic at the Centre for Heart Valve Innovation at St. Paul’s Hospital, Vancouver, Canada has pioneered advances in transcatheter heart valve devices, procedural approaches, and processes of care, and performed approximately 1000 procedures. Through a centralized triage program, patients with severe AS who are deemed at high/excessive surgical risk are referred to the THV Clinic for assessment of eligibility for TAVI. The St. Paul’s Hospital THV Clinic is not a comprehensive valve clinic mandated to manage all aspects of structural heart disease, but rather a procedure-based program resourced to screen for TAVI and other transcatheter therapies, offer the procedure if indicated, and return patients to the care of their most responsible cardiologist or other physician following discharge or if ineligible for TAVI. Patients referred to the THV Clinic are generally under the care of a cardiologist, cardiac surgeon or internist with whom they explore options for treatment prior to their referral for TAVI, and benefit from continuity of care in their community for their health care needs. The processes of care implemented to support the THV Program at St. Paul’s Hospital have been previously described.11 Approved indications include evidence of symptomatic severe/critical AS, documented high/excessive risk for sAVR, assessment of the patient’s likelihood to derive significant benefit for at least two years, and interdisciplinary Heart Team consensus that TAVI is the best treatment option. In addition to the diagnostic imaging findings of the angiogram, echocardiogram and computed tomography, and the medical opinions of cardiologists and cardiac surgeons, patients undergo a comprehensive and global functional assessment. To capture the physical, mental and social dimensions of self-reported health status, the Vancouver Functional Assessment includes the five-meter gait speed score,12 grip strength, activities of daily living,13 instrumental activities of daily living,14 the Mini-Mental state examination,15 and the Canadian Study on Health and Aging frailty score.16,17 In addition, patients complete the Kansas City Cardiomyopathy Questionnaire18 and rate their overall quality of life and health status. Further documentation includes a photograph of the patient’s face and full body in street clothes (with mobility aid if present) as a record of the “look test”, and a description of their living situation and access to social support. The threshold to determine the likelihood to derive benefit is complex, lacks comprehensive evidence, and involves a multidisciplinary discussion supported by multimodality assessments. The aim is to weigh the risks and benefits given the continuum of risk and the likelihood of utility/futility. Co-morbidities such as renal impairment, concomitant heart disease and respiratory disease are cautiously evaluated. Beyond anatomical and physiological considerations, other exclusions centre on excessive frailty, moderate to severe dementia, poor mobility, and dependence on others for daily functioning. There is limited evidence to select a single metric or a composite score to assess the futility of intervening. The Vancouver program continues to rely on global assessments and consensus opinions to determine function and frailty. The validation of composite scores that may determine the reliability of standardized measures in the THV population is on-going. Other models of measures of functional status are presented in Table 1. Table 1. Models of functional status assessment in transcatheter heart valve (THV) programs Vancouver THV Functional Assessment11 Functional status domains: Global frailty Physical health status Mental health status Social health status Quality of life Assessment metrics: Canadian Study on Health and Aging frailty scale Patient picture 5-meter gait speed Grip strength Mini Mental State Examination Activities of Daily Living Instrumental Activities of Daily Living Home environment and support Kansas City Cardiomyopathy Questionnaire Columbia Frailty Index19 Frailty domains: Slowness Weakness Wasting and malnutrition Inactivity Composite score: 5-meter gait speed Grip strength Serum albumin Activities of Daily Living Multidimensional Geriatric Assessment20 Geriatric assessment domains: Cognition Nutrition Mobility Activity Composite score: Mini Mental State Examination Mini Nutritional Assessment Timed Up and Go Test Pre-clinical mobility disability Activities of Daily Living Instrumental Activities of Daily Living Vancouver THV Functional Assessment11 Functional status domains: Global frailty Physical health status Mental health status Social health status Quality of life Assessment metrics: Canadian Study on Health and Aging frailty scale Patient picture 5-meter gait speed Grip strength Mini Mental State Examination Activities of Daily Living Instrumental Activities of Daily Living Home environment and support Kansas City Cardiomyopathy Questionnaire Columbia Frailty Index19 Frailty domains: Slowness Weakness Wasting and malnutrition Inactivity Composite score: 5-meter gait speed Grip strength Serum albumin Activities of Daily Living Multidimensional Geriatric Assessment20 Geriatric assessment domains: Cognition Nutrition Mobility Activity Composite score: Mini Mental State Examination Mini Nutritional Assessment Timed Up and Go Test Pre-clinical mobility disability Activities of Daily Living Instrumental Activities of Daily Living Open in new tab Table 1. Models of functional status assessment in transcatheter heart valve (THV) programs Vancouver THV Functional Assessment11 Functional status domains: Global frailty Physical health status Mental health status Social health status Quality of life Assessment metrics: Canadian Study on Health and Aging frailty scale Patient picture 5-meter gait speed Grip strength Mini Mental State Examination Activities of Daily Living Instrumental Activities of Daily Living Home environment and support Kansas City Cardiomyopathy Questionnaire Columbia Frailty Index19 Frailty domains: Slowness Weakness Wasting and malnutrition Inactivity Composite score: 5-meter gait speed Grip strength Serum albumin Activities of Daily Living Multidimensional Geriatric Assessment20 Geriatric assessment domains: Cognition Nutrition Mobility Activity Composite score: Mini Mental State Examination Mini Nutritional Assessment Timed Up and Go Test Pre-clinical mobility disability Activities of Daily Living Instrumental Activities of Daily Living Vancouver THV Functional Assessment11 Functional status domains: Global frailty Physical health status Mental health status Social health status Quality of life Assessment metrics: Canadian Study on Health and Aging frailty scale Patient picture 5-meter gait speed Grip strength Mini Mental State Examination Activities of Daily Living Instrumental Activities of Daily Living Home environment and support Kansas City Cardiomyopathy Questionnaire Columbia Frailty Index19 Frailty domains: Slowness Weakness Wasting and malnutrition Inactivity Composite score: 5-meter gait speed Grip strength Serum albumin Activities of Daily Living Multidimensional Geriatric Assessment20 Geriatric assessment domains: Cognition Nutrition Mobility Activity Composite score: Mini Mental State Examination Mini Nutritional Assessment Timed Up and Go Test Pre-clinical mobility disability Activities of Daily Living Instrumental Activities of Daily Living Open in new tab In the 18-month referral period between July 2011–December 2012, 565 referrals were received by the centralized THV Clinic from cardiologists and internists. Following the eligibility assessment, 232 (41%) were accepted for TAVI (78% transfemoral vascular access; 22% alternative surgical access, e.g., transapical or direct aortic), 92 (16%) were accepted for sAVR, 163 (29%) were referred for medical therapy and “watchful waiting” of change in symptoms and potential re-referral for TAVI, and 78 (14%) were deemed ineligible for TAVI or sAVR because of their excessive frailty and/or comorbidities and their poor likelihood of deriving benefit from valve replacement. Recent case selection indicators of patients accepted for TAVI who consented to have the procedure transfemoral TAVI and standardized Valve Academic Research Consortium (VARC2)21 outcomes are presented in Table 2. Table 2. Standardized outcomes of the Vancouver transfemoral transcatheter aortic valve implantation (TAVI) program (2012–2013) Demographics and medical history (n=134) . Age (mean±SD) 81.6±8.0 Society of Thoracic Surgeons (STS) risk score % (mean±SD) 6.2±3.8 Porcelain aorta 8 (6.0%) Prior coronary artery bypass graft surgery 24 (17.9%) Prior percutaneous coronary intervention 33 (24.6%) Severe lung disease 19 (14.2%) Bridging balloon aortic valvuloplasty 10 (7.5%) New York Heart Association functional class (NYHA) ≥ 3 121 (90.3%) Left ventricular ejection fraction % (mean±SD) 54.4±14.5 Aortic valve area (mean±SD) 0.7±0.2 Mean pressure gradient (mean±SD) 43.2±17.1 . 30-day Outcomes . . Death 4 (3.0%) AMI 0 (0.0%) Cerebrovascular accident (all) 0 (0.0%) Major bleed 2 (1.5%) Minor bleed 3 (2.3%) Major vascular 2 (1.5%) Minor vascular 2 (1.5%) Acute kidney injury 2 (1.5%) New permanent pacemaker 5 (3.8%) Length of stay (mean±SD) 3.3±2.5 Disposition (home) 128 (95.5%) 30-day readmission 10 (7.5%) Demographics and medical history (n=134) . Age (mean±SD) 81.6±8.0 Society of Thoracic Surgeons (STS) risk score % (mean±SD) 6.2±3.8 Porcelain aorta 8 (6.0%) Prior coronary artery bypass graft surgery 24 (17.9%) Prior percutaneous coronary intervention 33 (24.6%) Severe lung disease 19 (14.2%) Bridging balloon aortic valvuloplasty 10 (7.5%) New York Heart Association functional class (NYHA) ≥ 3 121 (90.3%) Left ventricular ejection fraction % (mean±SD) 54.4±14.5 Aortic valve area (mean±SD) 0.7±0.2 Mean pressure gradient (mean±SD) 43.2±17.1 . 30-day Outcomes . . Death 4 (3.0%) AMI 0 (0.0%) Cerebrovascular accident (all) 0 (0.0%) Major bleed 2 (1.5%) Minor bleed 3 (2.3%) Major vascular 2 (1.5%) Minor vascular 2 (1.5%) Acute kidney injury 2 (1.5%) New permanent pacemaker 5 (3.8%) Length of stay (mean±SD) 3.3±2.5 Disposition (home) 128 (95.5%) 30-day readmission 10 (7.5%) SD: standard deviation. Open in new tab Table 2. Standardized outcomes of the Vancouver transfemoral transcatheter aortic valve implantation (TAVI) program (2012–2013) Demographics and medical history (n=134) . Age (mean±SD) 81.6±8.0 Society of Thoracic Surgeons (STS) risk score % (mean±SD) 6.2±3.8 Porcelain aorta 8 (6.0%) Prior coronary artery bypass graft surgery 24 (17.9%) Prior percutaneous coronary intervention 33 (24.6%) Severe lung disease 19 (14.2%) Bridging balloon aortic valvuloplasty 10 (7.5%) New York Heart Association functional class (NYHA) ≥ 3 121 (90.3%) Left ventricular ejection fraction % (mean±SD) 54.4±14.5 Aortic valve area (mean±SD) 0.7±0.2 Mean pressure gradient (mean±SD) 43.2±17.1 . 30-day Outcomes . . Death 4 (3.0%) AMI 0 (0.0%) Cerebrovascular accident (all) 0 (0.0%) Major bleed 2 (1.5%) Minor bleed 3 (2.3%) Major vascular 2 (1.5%) Minor vascular 2 (1.5%) Acute kidney injury 2 (1.5%) New permanent pacemaker 5 (3.8%) Length of stay (mean±SD) 3.3±2.5 Disposition (home) 128 (95.5%) 30-day readmission 10 (7.5%) Demographics and medical history (n=134) . Age (mean±SD) 81.6±8.0 Society of Thoracic Surgeons (STS) risk score % (mean±SD) 6.2±3.8 Porcelain aorta 8 (6.0%) Prior coronary artery bypass graft surgery 24 (17.9%) Prior percutaneous coronary intervention 33 (24.6%) Severe lung disease 19 (14.2%) Bridging balloon aortic valvuloplasty 10 (7.5%) New York Heart Association functional class (NYHA) ≥ 3 121 (90.3%) Left ventricular ejection fraction % (mean±SD) 54.4±14.5 Aortic valve area (mean±SD) 0.7±0.2 Mean pressure gradient (mean±SD) 43.2±17.1 . 30-day Outcomes . . Death 4 (3.0%) AMI 0 (0.0%) Cerebrovascular accident (all) 0 (0.0%) Major bleed 2 (1.5%) Minor bleed 3 (2.3%) Major vascular 2 (1.5%) Minor vascular 2 (1.5%) Acute kidney injury 2 (1.5%) New permanent pacemaker 5 (3.8%) Length of stay (mean±SD) 3.3±2.5 Disposition (home) 128 (95.5%) 30-day readmission 10 (7.5%) SD: standard deviation. Open in new tab When TAVI is not an option The THV Clinic Nurse is the primary contact for patients referred for TAVI. The role includes the clinical coordination of eligibility assessment and procedure planning, the assessment of patients’ functional status, patient and family education, and the anticipatory assessment of pre-procedural optimization and discharge planning. The THV Clinic Nurse plays a pivotal role in the Heart Team discussions, and remains in close communication with the program’s medical director and other physicians, patients and their family. Although patients learn of their ineligibility for TAVI from their most responsible referring physician, most seek to understand their treatment options from the THV Clinic Nurse and require a facilitated transfer to medical management when their trajectory of care ends in the THV Clinic. To date, the focus of the rapidly growing number of TAVI programs remains the identification of suitable candidates and the optimization of procedural success. Our centre’s experience indicates that there is an unmet need to bridge the advancement of innovative approaches to the management of AS with the integration of best end-of-life practices in the care of patients with this life-limiting condition. Previous research has demonstrating that patients with severe heart disease (e.g. heart failure) and their families have similar needs than those with cancer, such as information about disease progression and prognostic, coordination of care, psychological care and symptom management requirements.22 International guidelines outline health care professionals’ responsibility to communicate with patients about their prognosis to promote informed decision-making and gain clarity about end-of-life care.23 Yet, in 2007, Davidson described the limited communication in the treatment of severe heart disease as a “conspiracy of silence” (p. 274).24 Drawing from research focused on heart failure, most patients do not discuss their prognosis with the health care team.22,25–27 In 2009, Strachan et al. found that only 11.3% of participants had discussed their prognosis with physicians while 46.2% wanted to know about their expected disease progression and prognosis. Contrary to evidence about patients’ preference for prognosis communication, many people realize themselves that they have a life-limiting disease and are dying.28 In a comprehensive review of barriers to end-of-life communication in heart failure in 2013, Garland et al. identified patients and caregivers, health care professionals, disease-specific and organizational barriers to end-of-life communication.29 In particular, the challenges posed by silo-like specialized medical care,30 the focus on curative and technological interventions,31 the lack of knowledge of available palliative services,32 and lack of clarity among primary care physicians and cardiologists about the responsibility to communicate prognostic information to the patient and activate end-of-life care services.28,30 Patients expressed fear of being seen as demanding,33 discomfort in raising questions about “taboo” subjects and making the physician uncomfortable,25,28 but also trust in their physicians’ clinical decision-making.34 TAVI remains a novel therapy with limited evidence to support the development of seamless processes of care.11 The advanced age and health care vulnerabilities of the patient population, the procedure-focused clinical trajectories, and the complexities of the referral patterns and involvement of multiple medical specialties to support the multimodality care requirements combine to form a “perfect storm” for potentially failing to attend to the important end-of-life requirements of patients presenting with severe AS with limited treatment options. To this end, the integration of a palliative approach in TAVI programs offers opportunities to attend to the important end-of-life needs of all patients with severe AS, to contribute to continuity of care, and to bridge the clinical trajectories for patients for whom TAVI is not an option. The palliative approach A palliative approach is an approach to caring for those with life-limiting illnesses that focuses on improving the patient’s and family’s quality of life by relieving suffering. This holistic, needs-based perspective aims to assess and improve pain and symptom management, communication, advanced care planning and psycho-social and spiritual needs regardless of prognosis. The focus is on meeting a person’s and family’s full range of needs at all stages of a life-limiting illness. There is a growing understanding from health care providers that a palliative approach is beneficial much earlier in the disease trajectory and should not be reserved solely for the last few months of life.35 For instance, in 2010, Temel et al. found that initiating a palliative approach early in the care of patients with metastatic non–small-cell lung cancer improved their quality of life and mood in addition to improving survival even in the absence of less aggressive treatments.36 Selman et al. suggested that a palliative approach can complement life-prolonging interventions that are often appropriate in life-limiting illnesses.31 The essential component for a best practice end-of-life care model for the development and integration of services across Canada were identified as universality, care coordination, assured access to a broad range of basic and advanced end-of-life services, and end-of-life care provision regardless of care setting.37 The quality markers for providers outlined in the UK National Health Services End-of-Life Strategy include an action plan for the delivery of high quality end-of-life care, effective mechanisms to identify and offer a plan to those who are approaching the end of life, the documentation and communication of individuals’ preferences and choices, coordination of care across organizational boundaries, and the adoption and monitoring of a standardized approach.38 The elements of communication about prognosis in life-limiting heart disease, including the use of simple and honest language and statistics, empathy, early planning, partnership, and follow-up 39 offer helpful direction to a procedure-based program to bridge practice. In Figure 1, a conceptual model for the integration of best end-of-life care adapted from the position statement of the European Society of Cardiology Advanced Heart Failure Group reflects the parallel processes necessary to match patients’ changing health trajectories in the setting of severe aortic stenosis.40 Figure 1. Open in new tabDownload slide Conceptual model for the integration of best end-of-life care in the care of severe aortic stenosis Adapted from Jaarsma et al., Eur J Heart Failure 2009;11: 433–443. Supported by the Government of Canada, the “Way Forward” is a three-year (2012–2015) collaborative initiative of the Quality End-of-Life Care Coalition of Canada and the Canadian Hospice Palliative Care Association to engage multiple stakeholders in integrating a palliative approach in all care settings.41 The objectives are to change the understanding and approaches to aging among key stakeholders as they relate to chronic and life-limiting illness, dying and advance care planning, and to enable stakeholders to move towards the seamless integration of palliative care services across all health care settings. The proposed strategies for acute care include developing policies and expectations to guide the integration of a palliative approach in clinical programs, to develop the skills and protocols, to educate acute care staff about services available in other settings, and to identify and track indicators. The integration of a palliative approach aims to improve patient-reported outcomes, as evidenced by fewer symptoms, better quality of life, and greater patient satisfaction, promote consistent seamless transitions, and better use of resources. Specialist clinicians have a responsibility to gain the knowledge and skills to support people at all stages of their illness to close the gap in care and ensure that a palliative approach is offered and operationalized early.42 Given this evidence and direction in health care policy, coupled with the THV Clinic Nurse’s raised awareness of potential opportunities for improving processes of care, the St. Paul’s Hospital team established a collaborative pilot project with the Palliative Care Team to explore options to integrate a palliative approach in a pioneering high volume TAVI centre. Tailoring a palliative approach in TAVI programs The principles guiding the initiative included limiting the scope to the program’s available resources, maintaining the role of the referring physician as the most responsible physician in charge of the patient’s overall care, and implementing and evaluating evidence-based interventions as recommended by the Palliative Care Team and agreed upon by the THV team. The pilot project included five interventions informed by the “Way Forward” framework for action and other local organizational initiatives endorsed by the Palliative Care Team.41 Integration of a palliative approach in initial eligibility assessment Mentored by the Palliative Care Team, the THV Clinic Nurse enacted simple steps to introduce a palliative approach upon the first clinical encounter with the patient undergoing the eligibility assessment for TAVI. To help identify patients who would benefit from a palliative approach, the recommended steps are: (a) ask yourself: “Would I be surprised if this patient died in the next 6 to 12 months?”; (b) look for one or more general clinical indicators (e.g. limited self-care, in chair or bed over 50% of the day, multiple hospitalizations in the past six months, requirement for extensive home or residential care); and (c) look for two or more cardiac disease indicators (e.g. New York Heart Association (NYHA) Functional Class III or IV, renal impairment, cardiac cachexia, two or more episodes needing intravenous furosemide and/or inotropes in the past six months). The THV Clinic Nurse was coached to employ phrases to engage the patient and their family in a focused conversation by raising the following questions as appropriate: “Tell me what you understand about your illness?”; “Tell me what you expect by having the valve procedure?” (i.e. TAVI); and “What is most important to you?” Through these questions, the nurse is able to piece together the patient’s preference for care, including answers to the following assessment questions: What do the individual and/or the family understand in regards to the individual’s current illness? Who needs to be involved in the decision-making process? Is the individual seeking life prolongation, symptom management or both? What other hopes do the individual and family have? What are the goals of care? Symptom assessment Clinical trials that have evaluated the safety and efficacy of TAVI have measured patient-reported outcomes using the Kansas City Cardiomyopathy Questionnaire (KCCQ) and the Short Form-12 General Health Survey (SF-12).43 Although validated in the heart failure patient population as appropriate measures of health-related quality of life, these questionnaires are lengthy and do not provide sufficient specific information about the patient’s symptom burden for use in clinical practice. We implemented the use of the Edmonton Symptom Assessment System (Revised Version) (ESAS-r), a 10-item visual analog scale developed for use in assessing the symptoms of patients receiving palliative care,44 and further validated in cancer care,45,46 and renal disease.47 The ESAS was designed to enable repeated quantitative measurements of symptom intensity with minimal patient burden. It includes nine common concerns (pain, tiredness, nausea, depression anxiety, drowsiness, appetite, well-being and shortness of breath), with the option of adding a 10th patient-specific symptom. Higher scores represent worse symptom intensity.48 Following initial testing, the instrument was adopted as a pilot project due the simplicity of visual analog administration, the feedback of patients, and the clinical value of the information provided. Patient education The standard St Paul’s Hospital patient education materials provided at the time of referral to support treatment decisions and informed content is titled “Making the decision to have transcatheter aortic valve implantation”. The booklet was developed in collaboration with patients and contains information about the eligibility assessment, managing expectations and understanding potential treatment options.50 The patient education resource was revised to describe severe AS as a life-limiting heart disease, to present the palliative approach as an integrated component of the TAVI program, to introduce the questions posed by the THV Clinic Nurse at the time of the initial hospital visit described earlier, and the administration of the ESAS measurement. Physician communication Two initiatives frame the objective of improving communication with referring physicians and clarifying their role as the most responsible physicians in end-of-life care. First, the ESAS form completed by patients at the time of their initial assessment for eligibility is copied to their referring physicians, regardless of the Heart Team’s decision. This intervention aims to raise the referring physician’s awareness of their patient’s symptom burden assessed in the TAVI centre, and to highlight the palliative approach lens of the St. Paul’s Hospital THV program. If the Heart Team deems a patient ineligible for TAVI because of excessive risk and/or low likelihood to benefit, it is the program’s standard practice for the medical director to summarize the team’s assessment and decision in writing for the referring physician. Therefore, the second intervention recommended by the Palliative Care Team was for the medical director to employ the statement: “The patient may benefit from a palliative approach” to improve communication with the primary care physician, clarify the responsibility for informing the patient and developing the care plan, and facilitate the trigger for activating palliative resources available in community. Patient communication In keeping with the pivotal role of the THV Clinic Nurse as the primary patient contact from referral to discharge from the program, a pilot study is currently under way to explore the feasibility and usefulness of conducting a telephone follow-up call to patients who are ineligible for TAVI. Coached by the Palliative Care Team, the Nurse calls patients following the Heart Team’s discussion of ineligibility, and conveys information about the medical director’s communication with the primary care physician, the availability of follow-up from the Palliative Care Team, and the benefits of the resources available. The objective of the conversation is to communicate clearly that TAVI is not an option due to the excessive risk and the low likelihood of benefit, that treatment options are available to monitor and improve symptom burden, and that the primary care physician is best suited for follow-up and continuity of care. In addition, the patient’s response at the time of the conversation can trigger the THV Clinic Nurse to refer the patient to the St. Paul’s Hospital Palliative Care Team for additional follow-up. Evaluation and next steps The evaluation of the described pilot project is a joint effort of the THV Clinic and the Palliative Care Teams. The evaluation will be informed by a qualitative study currently under way of the patients’ trajectory of care throughout the TAVI process, a survey of referring physicians’ experience of the communication of the ESAS findings, and a detailed review of the palliative care services accessed by patients ineligible for TAVI. The study of the patient’s experience from referral follow-up, including their motivation for treatment, experience of symptom burden, capacity to undergo intensive multi-modality assessment and reaction to the eligibility decision is essential to inform how to best integrate a palliative approach. The findings will assist clinicians in understanding the patient’s perspective to design interventions aimed at continuity of care when TAVI is not an option. The content of the survey of referring physicians used to evaluate the effectiveness of communication is outlined in Table 3. Lastly, registry data will be used to describe the nature and extent of palliative care services accessed by patients upon referral at the time of ineligibility for TAVI. Together, these three aspects of the evaluation program will provide a beginning to understanding of the barriers and opportunities for the optimal integration of a standardized palliative approach. Table 3. Survey of referring physicians after referral for palliative approach for the management of severe aortic stenosis ☑ Did you receive a copy of your patient’s “Edmonton Symptom Assessment Score” (ESAS)? ☑ Did you find the ESAS helpful to understand your patient’s symptoms associated with severe aortic stenosis? ☑ Did you use the ESAS score obtained during assessment for TAVI in the provision of care to your patients? ☑ Will you use the ESAS as a means to monitor your patient’s symptoms? ☑ Do you believe your patient requires Palliative Care Services? ☑ Has your patient been referred for Palliative Care Services? ☑ What additional communication or services can the TAVI program provide you for the care of your patient? ☑ Did you receive a copy of your patient’s “Edmonton Symptom Assessment Score” (ESAS)? ☑ Did you find the ESAS helpful to understand your patient’s symptoms associated with severe aortic stenosis? ☑ Did you use the ESAS score obtained during assessment for TAVI in the provision of care to your patients? ☑ Will you use the ESAS as a means to monitor your patient’s symptoms? ☑ Do you believe your patient requires Palliative Care Services? ☑ Has your patient been referred for Palliative Care Services? ☑ What additional communication or services can the TAVI program provide you for the care of your patient? Open in new tab Table 3. Survey of referring physicians after referral for palliative approach for the management of severe aortic stenosis ☑ Did you receive a copy of your patient’s “Edmonton Symptom Assessment Score” (ESAS)? ☑ Did you find the ESAS helpful to understand your patient’s symptoms associated with severe aortic stenosis? ☑ Did you use the ESAS score obtained during assessment for TAVI in the provision of care to your patients? ☑ Will you use the ESAS as a means to monitor your patient’s symptoms? ☑ Do you believe your patient requires Palliative Care Services? ☑ Has your patient been referred for Palliative Care Services? ☑ What additional communication or services can the TAVI program provide you for the care of your patient? ☑ Did you receive a copy of your patient’s “Edmonton Symptom Assessment Score” (ESAS)? ☑ Did you find the ESAS helpful to understand your patient’s symptoms associated with severe aortic stenosis? ☑ Did you use the ESAS score obtained during assessment for TAVI in the provision of care to your patients? ☑ Will you use the ESAS as a means to monitor your patient’s symptoms? ☑ Do you believe your patient requires Palliative Care Services? ☑ Has your patient been referred for Palliative Care Services? ☑ What additional communication or services can the TAVI program provide you for the care of your patient? Open in new tab Conclusion The THV Clinic at the Centre for Heart Valve Innovation at St. Paul’s Hospital is an international leader in transcatheter approaches to the management of structural heart disease and program development. A patient-centered approach to the development of cardiovascular innovations requires the inclusion of all facets of patient needs, beyond the safety and efficacy of new devices and procedural techniques. TAVI represents a paradigm shift in the treatment of AS, and is a new option for elderly people who were previously denied conventional surgery. Given the patients’ advanced age, life limiting disease and chronological end-of-life status, the integration of a palliative approach is an appropriate fit for bridging innovations in the management of severe aortic stenosis and best practice. Conflicts of interest The authors declare that there are no conflicts of interest. Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. Implications for practice Aortic stenosis is the most prevalent life-limiting structural heart disease. Transcatheter aortic valve implantation (TAVI) is an increasingly recommended therapy for higher risk elderly patients who are likely to benefit. Yet, a significant number of patients are ineligible due to their excessive frailty and comorbidities. Cardiovascular nurses are at the forefront of TAVI program development and are leading the implementation of evidence-based processes of care. The integration and evaluation of a palliative approach in nursing practice are essential to support patients and best practices in the rapidly evolving development of transcatheter therapies for patients in their last decade of life. References 1. Davies S W , Gershlick A H, Balcon R . Progression of valvular aortic stenosis: A long-term retrospective study . 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TI - Integrating a palliative approach in a transcatheter heart valve program: Bridging innovations in the management of severe aortic stenosis and best end-of-life practice
JF - European Journal of Cardiovascular Nursing
DO - 10.1177/1474515114520770
DA - 2014-04-01
UR - https://www.deepdyve.com/lp/oxford-university-press/integrating-a-palliative-approach-in-a-transcatheter-heart-valve-rUQ5coAjqT
SP - 177
EP - 184
VL - 13
IS - 2
DP - DeepDyve
ER -