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Potential palliative care quality indicators in heart disease patients: A review of the literature
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Contents lists available at ScienceDirect
Journal of Cardiology journal homepage: www.elsevier.com/locate/jjcc
Review
Potential palliative care quality indicators in heart disease patients: A review of the literature Atsushi Mizuno (MD, FJCC)a,*, Mitsunori Miyashita (RN, PhD)b, Akitoshi Hayashi (MD)c, Fujimi Kawai d, Koichiro Niwa (MD, PhD, FJCC)a, Akemi Utsunomiya (RN, MSN, CCNS)e, Shun Kohsaka (MD)f, Takashi Kohno (MD, PhD)f, Takeshi Yamamoto (MD, PhD)g,h, Morimasa Takayama (MD, PhD, FJCC)h,i, Toshihisa Anzai (MD, PhD, FACC, FAHA, FESC, FJCC)j a
Department of Cardiology, St. Luke’s International Hospital, Tokyo, Japan Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Miyagi, Japan c Department of Palliative Care, St. Luke’s International Hospital, Tokyo, Japan d St. Luke’s International University Library, Tokyo, Japan e Adult Nursing, St. Luke’s International University, Tokyo, Japan f Division of Cardiology, Department of Medicine, Keio University School of Medicine, Tokyo, Japan g Division of Cardiovascular Intensive Care, Nippon Medical School Hospital, Tokyo, Japan h Scientific Committee, Tokyo Cardiovascular Care Unit Network, Tokyo, Japan i Department of Cardiology, Sakakibara Heart Institute, Tokyo, Japan j Department of Cardiovascular Medicine, National Cerebral and Cardiovascular Center, Osaka, Japan b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 20 January 2017 Received in revised form 21 February 2017 Accepted 28 February 2017 Available online xxx
In spite of the increasing interest in palliative care for heart disease, data on the detailed methods of palliative care and its efficacy specifically in heart disease are still lacking. A structured PubMed literature review revealed no quality indicators of palliative care in heart disease. Therefore, we performed a narrative overview of the potential quality indicators in heart disease by reviewing previous literature concerning quality indicators in cancer patients. We summarize seven potential categories of quality indicators in heart disease: (1) presence and availability of a palliative care unit, palliative care team, and outpatient palliative care; (2) human resources such as number of skilled staff; (3) infrastructure; (4) presence and frequency of documentation or family survey; (5) patient-reported outcome measure (PROM) data and disease-specific patient quality of life such as The Kansas City Cardiomyopathy Questionnaire (KCCQ); (6) questionnaires and interviews about the quality of palliative care after death, including bereaved family surveys; and (7) admission-related outcomes such as place of death and intensive care unit length of stay. Although detailed measurements of palliative care quality have not been validated in heart disease, many indicators developed in cancer patients might also be applicable to heart disease. This new categorization might be useful to determine quality indicators in heart disease patients. ß 2017 Japanese College of Cardiology. Published by Elsevier Ltd. All rights reserved.
Keywords: Palliative care Heart disease Heart failure End-of-life Quality indicator
* Corresponding author at: Department of Cardiology, St. Luke’s International Hospital, 9-1, Akashi-cho, Chuo-ku, Tokyo 104-8650, Japan. E-mail address: [email protected] (A. Mizuno). http://dx.doi.org/10.1016/j.jjcc.2017.02.010 0914-5087/ß 2017 Japanese College of Cardiology. Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: Mizuno A, et al. Potential palliative care quality indicators in heart disease patients: A review of the literature. J Cardiol (2017), http://dx.doi.org/10.1016/j.jjcc.2017.02.010
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Contents Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Search strategies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Categories of quality indicators for palliative care . . . . . . . . . . . . . . . . . . . . . Structure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Documentation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Palliative care indications/timing of implementation . . . . . . . . . . . . . . . . . . . Physical symptoms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Care delivery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Relationship with pre-existing quality indicators in heart disease and heart Patient preferences and goals. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Outcome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Patient-reported outcome measures and family survey . . . . . . . . . . . . . . . . . Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Conflicts of interest . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Introduction Palliative care is defined by the World Health Organization as ‘‘an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual’’ [1]. Compared with the original definition of palliative care, which specifically targeted end-of-life patients, recent concepts in palliative care have expanded its focus to include all patients diagnosed with lifethreatening illness, even if these patients’ acute mortality rate is low [1,2]. Furthermore, while the target of palliative care was previously confined mainly to cancer patients, recent research in palliative care has focused on non-cancer patients such as those with heart disease and chronic lung disease [3,4]. In spite of the increasing interest in palliative care for heart disease, limited data are available concerning the detailed methods of palliative care and its efficacy in heart disease. Although some guidelines have referred to the use of palliative care for heart disease such as selected heart failure patients as Class IB recommendations [5], there are no specific recommendations on detailed palliative care practices for heart disease patients [6]. Therefore, we should consider the applicability of specific concepts and methods in palliative care to heart disease. In the field of cancer, quality indicators for palliative care have been reviewed and updated regularly, which is useful to understanding the current standard concepts and methods of palliative care [7,8]. However, there are limited systematic reviews about the quality indicators of palliative care in heart disease [9]. Therefore, this review focuses on the potential indicators of high-quality palliative care in heart disease patients with the aim to measure them appropriately. Search strategies Initially, we performed a structured PubMed literature review on quality indicators for palliative care in heart disease. However, we could not find specific quality indicators for heart disease (Supplementary file). Therefore, we shifted our focus to the potential quality indicators for palliative care in heart disease patients by using narrative review methods (narrative overview) for quality indicators in all palliative care patients. We focused on updates about quality indicators published after 2012, when the last systematic review of quality indicators for
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palliative care was performed (Supplementary file) [10]. We initially categorized reviewed indicators into the eight domains of palliative care advocated by the National Quality Forum (NQF), as in previous reports. However, we found recent indicators chiefly categorized into NQF-defined Domain 1 (80.8%, Structure and Processes of Care). Therefore, we developed seven new subcategories in the reviewing process to discuss potential quality indicators for palliative care in heart disease (Table 1). Categories of quality indicators for palliative care The most widely used classification of quality indicators in healthcare, proposed by Donabedian, establishes three levels of indicators: structure, process, and outcome of care [11]. Since this classification was developed, many quality indicators have been categorized according to these levels. In 2006, the NQF developed a
Table 1 Potential categories of quality indicators for palliative care in heart disease patients. Structure 1. Presence and availability of palliative care unit, palliative care team, and outpatient palliative care 2. Human resources: number of skilled staff 3. Infrastructure 3-1. Drug availability 3-2. Specialist equipment such as anti-decubitus mattresses, aspiration material, stoma care 3-3. Dedicated room, private room 3-4. Facilities for family to stay overnight Process 4. Presence and frequency of documentation or family survey about the following: 4-1. Screening and timing of implementation of palliative care 4-2. Physical symptoms such as pain and dyspnea 4-3. Care delivery such as drug administration, and detailed pain management 4-4. Patient preferences and goals, such as spiritual, religious, existential, and social aspects including advanced care planning/informed consent and shared decision-making Outcome 5. PROM data and disease-specific patient QOL assessment such as KCCQ 6. Questionnaire and interview about the quality of palliative care after death, including bereaved family survey 7. Admission-related outcomes such as place of death, ICU length of stay PROM, patient-reported outcome measures; QOL, quality of life; KCCQ, Kansas City Cardiomyopathy Questionnaire; ICU, intensive care unit.
Please cite this article in press as: Mizuno A, et al. Potential palliative care quality indicators in heart disease patients: A review of the literature. J Cardiol (2017), http://dx.doi.org/10.1016/j.jjcc.2017.02.010
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Table 2 NQF eight domains and 14 endorsed measures. 2006 Eight domains 1. Structure and Processes of Care 2. Physical Aspects of Care 3. Psychological and Psychiatric Aspects of Care Social Aspects of Care 4. 5. Spiritual, Religious, and Existential Aspects of Care 6. Cultural Aspects of Care 7. Care of the Imminently Dying Patient 8. Ethical and Legal Aspects of Care 2012 Fourteen endorsed measures 1. Hospice and Palliative Care – Pain Screening (UNC) 2. Hospice and Palliative Care – Pain Assessment (UNC) 3. Patients treated with an opioid who are given a bowel regimen (RAND) 4. Patients with advanced cancer assessed for pain at outpatient visits (RAND) 5. Hospice and Palliative Care – Dyspnea Treatment (UNC) 6. Hospice and Palliative Care – Dyspnea Screening (UNC) 7. Patients admitted to the ICU who have care preferences documented (RAND) 8. Hospice and Palliative Care – Treatment Preferences (UNC) 9. Percentage of hospice patients with documentation in the clinical record of a discussion of spiritual/religious concerns or documentation that the patient/caregiver did not want to discuss (Deyta) 10. Comfortable dying (NHPCO) (maintenance) 11. Hospitalized patients who die an expected death with an ICD that has been deactivated (RAND) 12. Family Evaluation of Hospice Care (NHPCO) (maintenance) 13. CARE – Consumer Assessments and Reports of End of Life (Center for Gerontology and Health Care Research) 14. Bereaved Family Survey (PROMISE Center) 2016 new endorsed measures 1. Comfortable Dying: Pain Brought to a Comfortable Level Within 48 Hours of Initial Assessment 2. Proportion of patients who died from cancer receiving chemotherapy in the last 14 days of life 3. Proportion of patients who died from cancer admitted to the ICU in the last 30 days of life 4. Proportion of patients who died from cancer not admitted to hospice 5. Proportion of patients who died from cancer admitted to hospice for less than 3 days 6. Patients Treated with an Opioid who are Given a Bowel Regimen 7. Hospitalized Patients Who Die an Expected Death with an ICD that Has Been Deactivated 8. Patients Admitted to ICU who Have Care Preferences Documented 9. Patients with Advanced Cancer Screened for Pain at Outpatient Visits 10. Hospice and Palliative Care – Pain Screening 11. Hospice and Palliative Care – Pain Assessment 12. Hospice and Palliative Care – Dyspnea Treatment 13. Hospice and Palliative Care – Dyspnea Screening 14. Hospice and Palliative Care – Treatment Preferences 15. Beliefs and Values – Percentage of hospice patients with documentation in the clinical record of a discussion of spiritual/religious concerns or documentation that the patient/caregiver did not want to discuss 16. CAHPS1 Hospice Survey (experience with care): (1) Hospice team communication; (2) Getting timely care; (3) Treating family member with respect; (4) Getting emotional and religious support; (5) Getting help for symptoms; and (6) Getting hospice training. In addition, there are two other measures, also called, ‘‘global ratings’’: (1) Rating of the hospice care and (2) Willingness to recommend the hospice
framework including eight fundamental domains to support the development and research of quality measures for palliative and hospice care (Table 2) [10]. The NQF further developed 14 endorsed palliative care measurements in 2012, which are not considered categories but rather as detail measures [12]. The NQF recently updated 16 measures in 2016. These categories and endorsed measurements might be useful to the development of quality indicators in heart disease [13]. However, as our results revealed, many indicators had been categories into process of care or physical aspects of the concepts of the eight NQF domain categorizations, which significantly overlapped. For example, the spiritual and social aspects of palliative care are conceptually different [13,14]. These measurements were only calculated via documentation and family surveys, similar to other process indicators. In this manuscript, we developed seven new categories that can be easily understood and conceptualized (Table 1) in order to discuss with an expert panel about measurable quality indicators in the future. Considering these categories and advocated measurements, we discuss potential quality indicators in the context of the seven newly established categories as well as Donabedian’s three-level classification of structure, process, and outcome of care.
Structure Quality indicators frequently pertain to structure because it is objective and easy to measure, especially by using medical charts or administrative databases compared with other indicators [15]. Specialist palliative care (SPC) services might be fundamental to delivering the appropriate palliative care. Screening for four common physical symptoms (pain, dyspnea, nausea, and constipation) was more often completed in patients receiving specialist palliative care services compared to those without specialist treatment [16]. Because the symptoms of palliative heart disease patients are similar to those of cancer patients, SPC services might improve heart disease patients’ quality of care [17]. Many previous reviews selected the indicators regarding the completion of accredited/standardized education by professionals who care for palliative care patients [18,19]. Since the 1990s, teaching basic palliative care skills to all practitioners has been prioritized [e.g. the Education in Palliative and End-of-life Care and End-of-Life Nursing Education Consortium (ENLEC) and Education in Palliative and End-of-life Care for Oncology courses] [20,21]. Education for all clinical practitioners in fields related to palliative care might be important because
Please cite this article in press as: Mizuno A, et al. Potential palliative care quality indicators in heart disease patients: A review of the literature. J Cardiol (2017), http://dx.doi.org/10.1016/j.jjcc.2017.02.010
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ignorance might be one cause of poor knowledge [22]. There is currently no specific education program for palliative care in heart disease. ENLEC was developed for patients in critical care and may be partially applicable in heart disease patients due to the nature of the condition. The availability of a private area for patients who are dying and their family members (including bereaved family) are possible indicators. These infrastructures are important for patients and family members even if we could not find definite data which showed a direct impact of facilities on heart disease patients’ quality of life. Access to equipment (such as anti-decubitus mattresses, suction equipment, etc.) was also considered. Pressure ulcers, which can occur in advanced heart disease patients similar to cancer patients’, may be frequently ignored [23]. We should also consider the risk of pressure ulcer in heart disease patients. Process As mentioned previously, most quality indicators concerned the process of care. De Roo et al. reported that 61% (199/326) of measures were categorized into process of care [8]. Among studies investigating the process of care, the major focus has been the documentation of delivered care [24]. Documentation In order to measure quality of care, in general, there are four data sources: existing administrative databases, existing medical records, clinical data collected prospectively for quality assessment purposes, and survey data collected prospectively [25]. Earle et al. initially used an administrative database to easily access several processes and outcomes of care such as drug usage, emergency room visits, and intensive care unit days [7]. In the case of heart disease, although several variables related to process of care can be easily measured by using administrative datasets, the risk of misclassification and non-standardized endpoints could potentially lead to inaccurate quality measurements [26]. Medical record analysis was previously examined in the Assessing Care of Vulnerable Elders (ACOVE) study and the Cancer Quality-ASSIST (Assessing Symptoms Side Effects and Indicators of Supportive Treatment) project [27,28]. The Quality ASSIST project determined that 2 h and 15 min are needed to complete 42 quality indicator measurements in each patient, which could be a potential barrier to adoption in every hospital [29]. Clinicians’ and administrators’ documentation of the necessary information about patient characteristics and care delivery incorporated into clinical practice can reduce missing data, will reduce the cost of collecting data, and will educate clinicians about important elements in the process of care [25]. Currently, documentation of each proposed quality indicator, regardless of category, is important not only for quantification but also for clinicians’ education, which could be applicable in heart disease. In contemporary clinical practice, the absence of documentation can result in no actual care or advanced care planning, which could potentially lead to a low quality of care. Therefore, it is not currently possible to determine the appropriate database to use for data collection related to palliative care in heart disease. Initially, multiple datasets should be compared. Palliative care indications/timing of implementation As previously mentioned, palliative care should be ideally considered at the time of life-threatening disease diagnosis. However, in clinical practice, many patients do not receive palliative consultation even if in need. Therefore, objective measures are necessary to integrate palliative care into the
Table 3 Initiating palliative care. 1. The patient has severe limitations, experiences symptoms even while at rest; mostly bedbound patients (NYHA class IV) 2. There are frequent hospital admissions (>3 per year) 3. The patient has frequent exacerbations of severe heart failure (>3 per year) 4. The patient is moderately disabled; dependent; requires considerable assistance and frequent care (Karnofsky score 50%) 5. The patient’s weight increases and fails to respond to increased dose of diuretics 6. A general deterioration of the clinical situation (edema, orthopnea, nycturia, dyspnea) 7. The patient mentions ‘end of life approaching’ NYHA, New York Heart Association.
management of heart disease patients. Thoonsen et al. advocated the use of quality indicators for the early detection of palliative care patients focused on the relatively later phase of heart failure, which could be considered the minimum timeline of integration (Table 3) [30]. In the acute management of heart disease, the criteria developed by Lamba et al. might be useful to determine the integration of palliative care (Table 4) [31]. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) investigators revealed that the majority of hospitalized heart disease patients who expressed a preference not to be resuscitated changed their minds within 2 months of discharge [32]. Therefore, regular monitoring of the palliative care preferences of patients and their families should be considered. Physical symptoms The symptoms of cancer and heart disease patients are similar, especially in end-of-life care settings [17]. Three symptoms, pain, breathlessness, and fatigue, are frequently observed in both patient populations, although breathlessness is more frequently encountered in heart disease. Therefore, screening and assessment of symptoms could be useful quality indicators in heart disease. Initial timing and monitoring frequency of symptoms ranged from 24–48 h [19,33]. Although many scales could be applicable for each symptom, specific symptom scales were not reported for many potential indicators. Raijmakers et al. used the Global Pain Scale and defined a symptom control score of 0–1 in at least 75% of patients during the last week of life as a quality indicator [34]. Breathlessness and pain have been measured by a 100-mm visual analogue scale in heart failure [35]. Regardless of the measurement scale used, symptom screening and monitoring should be considered specifically in heart disease patients.
Care delivery Although evidence-based interventions for symptoms in endof-life care patients have also been considered useful, the previously proposed treatment related-indicator ‘Access to palliative care assessed by morphine-equivalent consumption of strong opioid analgesia per death from cancer’ has been controversial to date [36]. Rather than a surrogate marker such as morphine usage, direct and objective symptom evaluation and management may be a quality indicator reflecting patient-reported outcomes [34,37]. In heart disease, the appropriateness of several treatment options should be considered. Invasive treatments and drugs might improve symptoms; however, side effects and complications could potentially impair patients’ QOL. Furthermore, in the area of cardiology, several invasive treatments and drugs are considered to indicate a high quality of care. Therefore, advance care planning may be even more important in heart disease patients, making an assessment of their preferences and needs even more imperative.
Please cite this article in press as: Mizuno A, et al. Potential palliative care quality indicators in heart disease patients: A review of the literature. J Cardiol (2017), http://dx.doi.org/10.1016/j.jjcc.2017.02.010
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Table 4 Criteria for initiating a palliative care assessment at initial patient evaluation. A potentially life-limiting or life-threatening condition AND Primary criteria 1. The surprise question You would not be surprised if the patient died within 12 months 2. Bounce-backs >1 ED visit or hospital admission for the same condition within the past several months Moderate-to-severe physical or psychological symptom intensity 3. Difficult-to-control symptoms 4. Complex care requirements Functional dependency; complex home support for ventilator/antibiotics 5. Functional decline Feeding intolerance or unintended decline in weight (e.g., failure to thrive) Secondary criteria 1. Admission from long-term care facility 2. Elderly patient, cognitively impaired, with acute hip fracture 3. Metastatic or locally advanced incurable cancer 4. Chronic home oxygen use 5. Out-of-hospital cardiac arrest 6. Current or past hospice or palliative care intervention 7. Limited social support (e.g., family stress, caregiver distress, chronic mental illness) 8. No history of completing an advance care planning discussion/document ED, emergency department.
Relationship with pre-existing quality indicators in heart disease and heart disease-specific concerns The American College of Cardiology (ACC)/American Heart Association (AHA) and related associations have developed not only many general guidelines but also quality indicators (performance measures). Quality indicators have been established for a number of specific heart diseases including heart failure, myocardial infarction, and atrial fibrillation [38]. However, these indicators were chiefly intended to decrease mortality and prolong patients’ life-expectancy, whereas extending the duration of life is not the only outcome of palliative care. Therefore, the appropriateness of several treatments generally considered to indicate high quality care in heart disease should be considered, including mechanical circulatory support, surgery and percutaneous intervention, implantable cardiac defibrillator, and drug therapy. In palliative care for cancer, overuse of aggressive anticancer therapies may result in more toxicity than clinical benefit [39]. However, there is no clear cut-off value to define a treatment as aggressive or not. Interventions for heart disease present a similar situation. Mechanical circulatory support such as intraaortic balloon pumping, and extracorporeal membrane oxygenation could be considered aggressive treatments or contraindications in patients >80 years old or with irreversible comorbidities [40]. Surgery and percutaneous intervention for valvular disease should be avoided in patients without a reasonable life expectancy [41]. Furthermore, in spite of the recent increase in the number of coronary interventions even in the setting of metastatic cancer, the outcome after the intervention was not guaranteed [42]. Therefore, when considering these treatments, we should consider patients’ values and preferences appropriately. With regard to implantable cardioverter defibrillators (ICD), the 2012 NQF-endorsed measures included, ‘‘Hospitalized patients who die an expected death with an ICD that has been deactivated.’’ We easily accept the concepts, but identification of expected deaths remains a major challenge. Although drug therapies are not usually considered aggressive, recent data have revealed that drug discontinuation could be an option in palliative care. For example, discontinuing statin therapy could be an option in palliative therapy [43]. Some preventive medications such as anti-hypertensive drugs, anti-diabetic medications, and lipid-regulating drugs in end-of-life settings should also be discussed [44]. In the context of palliative care, previously developed quality indicators may not be directly applicable in heart disease. We should engage in a shared decision-making process to determine when and who should initiate and discontinue treatment or drugs, and should clearly document these decisions.
Patient preferences and goals As mentioned above, any treatments and care should be discussed with heart disease patients and their families in detail. To understand their preferences, informed consent can be helpful for delivering successful care to palliative patients [45]. Whitney et al. conceptualized that informed or simple consent were useful for high- and low-risk decisions regardless of uncertainty, respectively [46]. Shared decision making might be more appropriate in the high risk with uncertainty setting of palliative care. The similar practice of ‘‘advance care planning’’ was more frequently used in palliative care settings [47]. Originally, advance care planning was defined by the National Hospice and Palliative Care Organization as ‘‘making decisions about the care you would want to receive if you happen to become unable to speak for yourself’’ [48]. The concept of advance care planning was recently further enlarged [49] as a process of discussion and review enabling patients to express and, if they wish, to record views, values, and specific treatment choices to inform their future care [50]. Therefore, shared decision making and advance care planning significantly overlap. Further evaluation is necessary to determine which approach might be more applicable to use as quality indicator in patients with heart disease. Regardless of the method, the presence of documentation and sharing of patients’ preferences, needs, and goals is important in the setting of palliative care for heart disease. Outcome Patient-reported outcome measures and family survey Palliative care outcome measures remain challenging to objectively define. First, patient-reported outcome measures (PROMs), used to capture aspects of health status or quality of life directly from the patient, can help professionals to focus on what matters to patients and families [51]. The generic measures of PROM such as the 36-item Short-Form Health Survey (SF-36), and palliative care-specific PROMs such as the Palliative Care Outcome Scale (POS) [52], could serve as palliative care indicators along with the previously mentioned physical measures. In a previous report, generic measures were easily applicable in heart disease [53]. Palliative care-specific measures can evaluate symptoms objectively in heart disease [54]. Further heart disease-specific measures such as the Minnesota Living with Heart Failure Questionnaire (MLHFQ) and the Kansas City Cardiomyopathy Questionnaire (KCCQ) for heart failure have evidence for use as PROMs [55]. Detailed and
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specific symptom measurements could serve as outcome measures. Specifically in the final week of care, Raijmakers et al. defined a high quality of care as 75% of palliative patients achieving a global pain score of 0–1 and no increase of other symptom scales in the final week of life [34]. No specific numerical value has been established to determine a high quality of care in heart disease palliative care settings, although some of these scores and scales could be applicable. As mentioned above, these evaluations should be documented. Second, questionnaires and interviews of family members could be potential outcome indicators in palliative care. The NQF has endorsed the Bereaved Family Survey and Family Evaluation of Hospice Care as indicators of end-of-life palliative care [12]. Other validated family surveys such as the Care Evaluation Scale are also available [56]. The use of these assessments should be further validated as quality indicators in palliative care for heart disease [57]. Finally, Nakazawa and Hui et al. selected the place of death as an indicator, which could also be a potential indicator for heart disease [18,57]. Raijmakers et al. further selected ‘‘fewer than 4% of all patients who died from cancer admitted to the ICU in the last 30 days of life’’ as an indicator [34]. As previously mentioned, the preferred place of death should be discussed with patients and family using informed consent/advance care planning/shared decision making. Until appropriate data have been analyzed, the cut-off value for ICU death of 4% cannot be applied directly to heart disease.
[6] [7]
[8]
[9] [10]
[11] [12]
[13]
[14]
[15]
[16]
[17]
Conclusion [18]
We report a narrative overview of quality indicators of palliative care in heart disease patients, and summarize seven categories of indicators. Many indicators that have been developed in cancer patients may also be applicable in heart disease. Further expert discussions are necessary to implement potential quality indicators in clinical practice.
[19]
[20] [21]
Conflicts of interest [22]
There are no conflicts of interest to declare. [23]
Acknowledgment This research is supported by the ‘‘Practical Research Project for Lifestyle-related Diseases including Cardiovascular Diseases and Diabetes Mellitus’’ from the Japan Agency for Medical Research and Development, AMED.
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Appendix A. Supplementary data [28]
Supplementary data associated with this article can be found, in the online version, at doi:10.1016/j.jjcc.2017.02.010.
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JJCC-1479; No. of Pages 7 Journal of Cardiology xxx (2017) xxx–xxx
Contents lists available at ScienceDirect
Journal of Cardiology journal homepage: www.elsevier.com/locate/jjcc
Review
Potential palliative care quality indicators in heart disease patients: A review of the literature Atsushi Mizuno (MD, FJCC)a,*, Mitsunori Miyashita (RN, PhD)b, Akitoshi Hayashi (MD)c, Fujimi Kawai d, Koichiro Niwa (MD, PhD, FJCC)a, Akemi Utsunomiya (RN, MSN, CCNS)e, Shun Kohsaka (MD)f, Takashi Kohno (MD, PhD)f, Takeshi Yamamoto (MD, PhD)g,h, Morimasa Takayama (MD, PhD, FJCC)h,i, Toshihisa Anzai (MD, PhD, FACC, FAHA, FESC, FJCC)j a
Department of Cardiology, St. Luke’s International Hospital, Tokyo, Japan Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Miyagi, Japan c Department of Palliative Care, St. Luke’s International Hospital, Tokyo, Japan d St. Luke’s International University Library, Tokyo, Japan e Adult Nursing, St. Luke’s International University, Tokyo, Japan f Division of Cardiology, Department of Medicine, Keio University School of Medicine, Tokyo, Japan g Division of Cardiovascular Intensive Care, Nippon Medical School Hospital, Tokyo, Japan h Scientific Committee, Tokyo Cardiovascular Care Unit Network, Tokyo, Japan i Department of Cardiology, Sakakibara Heart Institute, Tokyo, Japan j Department of Cardiovascular Medicine, National Cerebral and Cardiovascular Center, Osaka, Japan b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 20 January 2017 Received in revised form 21 February 2017 Accepted 28 February 2017 Available online xxx
In spite of the increasing interest in palliative care for heart disease, data on the detailed methods of palliative care and its efficacy specifically in heart disease are still lacking. A structured PubMed literature review revealed no quality indicators of palliative care in heart disease. Therefore, we performed a narrative overview of the potential quality indicators in heart disease by reviewing previous literature concerning quality indicators in cancer patients. We summarize seven potential categories of quality indicators in heart disease: (1) presence and availability of a palliative care unit, palliative care team, and outpatient palliative care; (2) human resources such as number of skilled staff; (3) infrastructure; (4) presence and frequency of documentation or family survey; (5) patient-reported outcome measure (PROM) data and disease-specific patient quality of life such as The Kansas City Cardiomyopathy Questionnaire (KCCQ); (6) questionnaires and interviews about the quality of palliative care after death, including bereaved family surveys; and (7) admission-related outcomes such as place of death and intensive care unit length of stay. Although detailed measurements of palliative care quality have not been validated in heart disease, many indicators developed in cancer patients might also be applicable to heart disease. This new categorization might be useful to determine quality indicators in heart disease patients. ß 2017 Japanese College of Cardiology. Published by Elsevier Ltd. All rights reserved.
Keywords: Palliative care Heart disease Heart failure End-of-life Quality indicator
* Corresponding author at: Department of Cardiology, St. Luke’s International Hospital, 9-1, Akashi-cho, Chuo-ku, Tokyo 104-8650, Japan. E-mail address: [email protected] (A. Mizuno). http://dx.doi.org/10.1016/j.jjcc.2017.02.010 0914-5087/ß 2017 Japanese College of Cardiology. Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: Mizuno A, et al. Potential palliative care quality indicators in heart disease patients: A review of the literature. J Cardiol (2017), http://dx.doi.org/10.1016/j.jjcc.2017.02.010
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Contents Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Search strategies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Categories of quality indicators for palliative care . . . . . . . . . . . . . . . . . . . . . Structure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Documentation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Palliative care indications/timing of implementation . . . . . . . . . . . . . . . . . . . Physical symptoms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Care delivery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Relationship with pre-existing quality indicators in heart disease and heart Patient preferences and goals. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Outcome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Patient-reported outcome measures and family survey . . . . . . . . . . . . . . . . . Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Conflicts of interest . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Introduction Palliative care is defined by the World Health Organization as ‘‘an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual’’ [1]. Compared with the original definition of palliative care, which specifically targeted end-of-life patients, recent concepts in palliative care have expanded its focus to include all patients diagnosed with lifethreatening illness, even if these patients’ acute mortality rate is low [1,2]. Furthermore, while the target of palliative care was previously confined mainly to cancer patients, recent research in palliative care has focused on non-cancer patients such as those with heart disease and chronic lung disease [3,4]. In spite of the increasing interest in palliative care for heart disease, limited data are available concerning the detailed methods of palliative care and its efficacy in heart disease. Although some guidelines have referred to the use of palliative care for heart disease such as selected heart failure patients as Class IB recommendations [5], there are no specific recommendations on detailed palliative care practices for heart disease patients [6]. Therefore, we should consider the applicability of specific concepts and methods in palliative care to heart disease. In the field of cancer, quality indicators for palliative care have been reviewed and updated regularly, which is useful to understanding the current standard concepts and methods of palliative care [7,8]. However, there are limited systematic reviews about the quality indicators of palliative care in heart disease [9]. Therefore, this review focuses on the potential indicators of high-quality palliative care in heart disease patients with the aim to measure them appropriately. Search strategies Initially, we performed a structured PubMed literature review on quality indicators for palliative care in heart disease. However, we could not find specific quality indicators for heart disease (Supplementary file). Therefore, we shifted our focus to the potential quality indicators for palliative care in heart disease patients by using narrative review methods (narrative overview) for quality indicators in all palliative care patients. We focused on updates about quality indicators published after 2012, when the last systematic review of quality indicators for
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palliative care was performed (Supplementary file) [10]. We initially categorized reviewed indicators into the eight domains of palliative care advocated by the National Quality Forum (NQF), as in previous reports. However, we found recent indicators chiefly categorized into NQF-defined Domain 1 (80.8%, Structure and Processes of Care). Therefore, we developed seven new subcategories in the reviewing process to discuss potential quality indicators for palliative care in heart disease (Table 1). Categories of quality indicators for palliative care The most widely used classification of quality indicators in healthcare, proposed by Donabedian, establishes three levels of indicators: structure, process, and outcome of care [11]. Since this classification was developed, many quality indicators have been categorized according to these levels. In 2006, the NQF developed a
Table 1 Potential categories of quality indicators for palliative care in heart disease patients. Structure 1. Presence and availability of palliative care unit, palliative care team, and outpatient palliative care 2. Human resources: number of skilled staff 3. Infrastructure 3-1. Drug availability 3-2. Specialist equipment such as anti-decubitus mattresses, aspiration material, stoma care 3-3. Dedicated room, private room 3-4. Facilities for family to stay overnight Process 4. Presence and frequency of documentation or family survey about the following: 4-1. Screening and timing of implementation of palliative care 4-2. Physical symptoms such as pain and dyspnea 4-3. Care delivery such as drug administration, and detailed pain management 4-4. Patient preferences and goals, such as spiritual, religious, existential, and social aspects including advanced care planning/informed consent and shared decision-making Outcome 5. PROM data and disease-specific patient QOL assessment such as KCCQ 6. Questionnaire and interview about the quality of palliative care after death, including bereaved family survey 7. Admission-related outcomes such as place of death, ICU length of stay PROM, patient-reported outcome measures; QOL, quality of life; KCCQ, Kansas City Cardiomyopathy Questionnaire; ICU, intensive care unit.
Please cite this article in press as: Mizuno A, et al. Potential palliative care quality indicators in heart disease patients: A review of the literature. J Cardiol (2017), http://dx.doi.org/10.1016/j.jjcc.2017.02.010
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Table 2 NQF eight domains and 14 endorsed measures. 2006 Eight domains 1. Structure and Processes of Care 2. Physical Aspects of Care 3. Psychological and Psychiatric Aspects of Care Social Aspects of Care 4. 5. Spiritual, Religious, and Existential Aspects of Care 6. Cultural Aspects of Care 7. Care of the Imminently Dying Patient 8. Ethical and Legal Aspects of Care 2012 Fourteen endorsed measures 1. Hospice and Palliative Care – Pain Screening (UNC) 2. Hospice and Palliative Care – Pain Assessment (UNC) 3. Patients treated with an opioid who are given a bowel regimen (RAND) 4. Patients with advanced cancer assessed for pain at outpatient visits (RAND) 5. Hospice and Palliative Care – Dyspnea Treatment (UNC) 6. Hospice and Palliative Care – Dyspnea Screening (UNC) 7. Patients admitted to the ICU who have care preferences documented (RAND) 8. Hospice and Palliative Care – Treatment Preferences (UNC) 9. Percentage of hospice patients with documentation in the clinical record of a discussion of spiritual/religious concerns or documentation that the patient/caregiver did not want to discuss (Deyta) 10. Comfortable dying (NHPCO) (maintenance) 11. Hospitalized patients who die an expected death with an ICD that has been deactivated (RAND) 12. Family Evaluation of Hospice Care (NHPCO) (maintenance) 13. CARE – Consumer Assessments and Reports of End of Life (Center for Gerontology and Health Care Research) 14. Bereaved Family Survey (PROMISE Center) 2016 new endorsed measures 1. Comfortable Dying: Pain Brought to a Comfortable Level Within 48 Hours of Initial Assessment 2. Proportion of patients who died from cancer receiving chemotherapy in the last 14 days of life 3. Proportion of patients who died from cancer admitted to the ICU in the last 30 days of life 4. Proportion of patients who died from cancer not admitted to hospice 5. Proportion of patients who died from cancer admitted to hospice for less than 3 days 6. Patients Treated with an Opioid who are Given a Bowel Regimen 7. Hospitalized Patients Who Die an Expected Death with an ICD that Has Been Deactivated 8. Patients Admitted to ICU who Have Care Preferences Documented 9. Patients with Advanced Cancer Screened for Pain at Outpatient Visits 10. Hospice and Palliative Care – Pain Screening 11. Hospice and Palliative Care – Pain Assessment 12. Hospice and Palliative Care – Dyspnea Treatment 13. Hospice and Palliative Care – Dyspnea Screening 14. Hospice and Palliative Care – Treatment Preferences 15. Beliefs and Values – Percentage of hospice patients with documentation in the clinical record of a discussion of spiritual/religious concerns or documentation that the patient/caregiver did not want to discuss 16. CAHPS1 Hospice Survey (experience with care): (1) Hospice team communication; (2) Getting timely care; (3) Treating family member with respect; (4) Getting emotional and religious support; (5) Getting help for symptoms; and (6) Getting hospice training. In addition, there are two other measures, also called, ‘‘global ratings’’: (1) Rating of the hospice care and (2) Willingness to recommend the hospice
framework including eight fundamental domains to support the development and research of quality measures for palliative and hospice care (Table 2) [10]. The NQF further developed 14 endorsed palliative care measurements in 2012, which are not considered categories but rather as detail measures [12]. The NQF recently updated 16 measures in 2016. These categories and endorsed measurements might be useful to the development of quality indicators in heart disease [13]. However, as our results revealed, many indicators had been categories into process of care or physical aspects of the concepts of the eight NQF domain categorizations, which significantly overlapped. For example, the spiritual and social aspects of palliative care are conceptually different [13,14]. These measurements were only calculated via documentation and family surveys, similar to other process indicators. In this manuscript, we developed seven new categories that can be easily understood and conceptualized (Table 1) in order to discuss with an expert panel about measurable quality indicators in the future. Considering these categories and advocated measurements, we discuss potential quality indicators in the context of the seven newly established categories as well as Donabedian’s three-level classification of structure, process, and outcome of care.
Structure Quality indicators frequently pertain to structure because it is objective and easy to measure, especially by using medical charts or administrative databases compared with other indicators [15]. Specialist palliative care (SPC) services might be fundamental to delivering the appropriate palliative care. Screening for four common physical symptoms (pain, dyspnea, nausea, and constipation) was more often completed in patients receiving specialist palliative care services compared to those without specialist treatment [16]. Because the symptoms of palliative heart disease patients are similar to those of cancer patients, SPC services might improve heart disease patients’ quality of care [17]. Many previous reviews selected the indicators regarding the completion of accredited/standardized education by professionals who care for palliative care patients [18,19]. Since the 1990s, teaching basic palliative care skills to all practitioners has been prioritized [e.g. the Education in Palliative and End-of-life Care and End-of-Life Nursing Education Consortium (ENLEC) and Education in Palliative and End-of-life Care for Oncology courses] [20,21]. Education for all clinical practitioners in fields related to palliative care might be important because
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ignorance might be one cause of poor knowledge [22]. There is currently no specific education program for palliative care in heart disease. ENLEC was developed for patients in critical care and may be partially applicable in heart disease patients due to the nature of the condition. The availability of a private area for patients who are dying and their family members (including bereaved family) are possible indicators. These infrastructures are important for patients and family members even if we could not find definite data which showed a direct impact of facilities on heart disease patients’ quality of life. Access to equipment (such as anti-decubitus mattresses, suction equipment, etc.) was also considered. Pressure ulcers, which can occur in advanced heart disease patients similar to cancer patients’, may be frequently ignored [23]. We should also consider the risk of pressure ulcer in heart disease patients. Process As mentioned previously, most quality indicators concerned the process of care. De Roo et al. reported that 61% (199/326) of measures were categorized into process of care [8]. Among studies investigating the process of care, the major focus has been the documentation of delivered care [24]. Documentation In order to measure quality of care, in general, there are four data sources: existing administrative databases, existing medical records, clinical data collected prospectively for quality assessment purposes, and survey data collected prospectively [25]. Earle et al. initially used an administrative database to easily access several processes and outcomes of care such as drug usage, emergency room visits, and intensive care unit days [7]. In the case of heart disease, although several variables related to process of care can be easily measured by using administrative datasets, the risk of misclassification and non-standardized endpoints could potentially lead to inaccurate quality measurements [26]. Medical record analysis was previously examined in the Assessing Care of Vulnerable Elders (ACOVE) study and the Cancer Quality-ASSIST (Assessing Symptoms Side Effects and Indicators of Supportive Treatment) project [27,28]. The Quality ASSIST project determined that 2 h and 15 min are needed to complete 42 quality indicator measurements in each patient, which could be a potential barrier to adoption in every hospital [29]. Clinicians’ and administrators’ documentation of the necessary information about patient characteristics and care delivery incorporated into clinical practice can reduce missing data, will reduce the cost of collecting data, and will educate clinicians about important elements in the process of care [25]. Currently, documentation of each proposed quality indicator, regardless of category, is important not only for quantification but also for clinicians’ education, which could be applicable in heart disease. In contemporary clinical practice, the absence of documentation can result in no actual care or advanced care planning, which could potentially lead to a low quality of care. Therefore, it is not currently possible to determine the appropriate database to use for data collection related to palliative care in heart disease. Initially, multiple datasets should be compared. Palliative care indications/timing of implementation As previously mentioned, palliative care should be ideally considered at the time of life-threatening disease diagnosis. However, in clinical practice, many patients do not receive palliative consultation even if in need. Therefore, objective measures are necessary to integrate palliative care into the
Table 3 Initiating palliative care. 1. The patient has severe limitations, experiences symptoms even while at rest; mostly bedbound patients (NYHA class IV) 2. There are frequent hospital admissions (>3 per year) 3. The patient has frequent exacerbations of severe heart failure (>3 per year) 4. The patient is moderately disabled; dependent; requires considerable assistance and frequent care (Karnofsky score 50%) 5. The patient’s weight increases and fails to respond to increased dose of diuretics 6. A general deterioration of the clinical situation (edema, orthopnea, nycturia, dyspnea) 7. The patient mentions ‘end of life approaching’ NYHA, New York Heart Association.
management of heart disease patients. Thoonsen et al. advocated the use of quality indicators for the early detection of palliative care patients focused on the relatively later phase of heart failure, which could be considered the minimum timeline of integration (Table 3) [30]. In the acute management of heart disease, the criteria developed by Lamba et al. might be useful to determine the integration of palliative care (Table 4) [31]. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) investigators revealed that the majority of hospitalized heart disease patients who expressed a preference not to be resuscitated changed their minds within 2 months of discharge [32]. Therefore, regular monitoring of the palliative care preferences of patients and their families should be considered. Physical symptoms The symptoms of cancer and heart disease patients are similar, especially in end-of-life care settings [17]. Three symptoms, pain, breathlessness, and fatigue, are frequently observed in both patient populations, although breathlessness is more frequently encountered in heart disease. Therefore, screening and assessment of symptoms could be useful quality indicators in heart disease. Initial timing and monitoring frequency of symptoms ranged from 24–48 h [19,33]. Although many scales could be applicable for each symptom, specific symptom scales were not reported for many potential indicators. Raijmakers et al. used the Global Pain Scale and defined a symptom control score of 0–1 in at least 75% of patients during the last week of life as a quality indicator [34]. Breathlessness and pain have been measured by a 100-mm visual analogue scale in heart failure [35]. Regardless of the measurement scale used, symptom screening and monitoring should be considered specifically in heart disease patients.
Care delivery Although evidence-based interventions for symptoms in endof-life care patients have also been considered useful, the previously proposed treatment related-indicator ‘Access to palliative care assessed by morphine-equivalent consumption of strong opioid analgesia per death from cancer’ has been controversial to date [36]. Rather than a surrogate marker such as morphine usage, direct and objective symptom evaluation and management may be a quality indicator reflecting patient-reported outcomes [34,37]. In heart disease, the appropriateness of several treatment options should be considered. Invasive treatments and drugs might improve symptoms; however, side effects and complications could potentially impair patients’ QOL. Furthermore, in the area of cardiology, several invasive treatments and drugs are considered to indicate a high quality of care. Therefore, advance care planning may be even more important in heart disease patients, making an assessment of their preferences and needs even more imperative.
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Table 4 Criteria for initiating a palliative care assessment at initial patient evaluation. A potentially life-limiting or life-threatening condition AND Primary criteria 1. The surprise question You would not be surprised if the patient died within 12 months 2. Bounce-backs >1 ED visit or hospital admission for the same condition within the past several months Moderate-to-severe physical or psychological symptom intensity 3. Difficult-to-control symptoms 4. Complex care requirements Functional dependency; complex home support for ventilator/antibiotics 5. Functional decline Feeding intolerance or unintended decline in weight (e.g., failure to thrive) Secondary criteria 1. Admission from long-term care facility 2. Elderly patient, cognitively impaired, with acute hip fracture 3. Metastatic or locally advanced incurable cancer 4. Chronic home oxygen use 5. Out-of-hospital cardiac arrest 6. Current or past hospice or palliative care intervention 7. Limited social support (e.g., family stress, caregiver distress, chronic mental illness) 8. No history of completing an advance care planning discussion/document ED, emergency department.
Relationship with pre-existing quality indicators in heart disease and heart disease-specific concerns The American College of Cardiology (ACC)/American Heart Association (AHA) and related associations have developed not only many general guidelines but also quality indicators (performance measures). Quality indicators have been established for a number of specific heart diseases including heart failure, myocardial infarction, and atrial fibrillation [38]. However, these indicators were chiefly intended to decrease mortality and prolong patients’ life-expectancy, whereas extending the duration of life is not the only outcome of palliative care. Therefore, the appropriateness of several treatments generally considered to indicate high quality care in heart disease should be considered, including mechanical circulatory support, surgery and percutaneous intervention, implantable cardiac defibrillator, and drug therapy. In palliative care for cancer, overuse of aggressive anticancer therapies may result in more toxicity than clinical benefit [39]. However, there is no clear cut-off value to define a treatment as aggressive or not. Interventions for heart disease present a similar situation. Mechanical circulatory support such as intraaortic balloon pumping, and extracorporeal membrane oxygenation could be considered aggressive treatments or contraindications in patients >80 years old or with irreversible comorbidities [40]. Surgery and percutaneous intervention for valvular disease should be avoided in patients without a reasonable life expectancy [41]. Furthermore, in spite of the recent increase in the number of coronary interventions even in the setting of metastatic cancer, the outcome after the intervention was not guaranteed [42]. Therefore, when considering these treatments, we should consider patients’ values and preferences appropriately. With regard to implantable cardioverter defibrillators (ICD), the 2012 NQF-endorsed measures included, ‘‘Hospitalized patients who die an expected death with an ICD that has been deactivated.’’ We easily accept the concepts, but identification of expected deaths remains a major challenge. Although drug therapies are not usually considered aggressive, recent data have revealed that drug discontinuation could be an option in palliative care. For example, discontinuing statin therapy could be an option in palliative therapy [43]. Some preventive medications such as anti-hypertensive drugs, anti-diabetic medications, and lipid-regulating drugs in end-of-life settings should also be discussed [44]. In the context of palliative care, previously developed quality indicators may not be directly applicable in heart disease. We should engage in a shared decision-making process to determine when and who should initiate and discontinue treatment or drugs, and should clearly document these decisions.
Patient preferences and goals As mentioned above, any treatments and care should be discussed with heart disease patients and their families in detail. To understand their preferences, informed consent can be helpful for delivering successful care to palliative patients [45]. Whitney et al. conceptualized that informed or simple consent were useful for high- and low-risk decisions regardless of uncertainty, respectively [46]. Shared decision making might be more appropriate in the high risk with uncertainty setting of palliative care. The similar practice of ‘‘advance care planning’’ was more frequently used in palliative care settings [47]. Originally, advance care planning was defined by the National Hospice and Palliative Care Organization as ‘‘making decisions about the care you would want to receive if you happen to become unable to speak for yourself’’ [48]. The concept of advance care planning was recently further enlarged [49] as a process of discussion and review enabling patients to express and, if they wish, to record views, values, and specific treatment choices to inform their future care [50]. Therefore, shared decision making and advance care planning significantly overlap. Further evaluation is necessary to determine which approach might be more applicable to use as quality indicator in patients with heart disease. Regardless of the method, the presence of documentation and sharing of patients’ preferences, needs, and goals is important in the setting of palliative care for heart disease. Outcome Patient-reported outcome measures and family survey Palliative care outcome measures remain challenging to objectively define. First, patient-reported outcome measures (PROMs), used to capture aspects of health status or quality of life directly from the patient, can help professionals to focus on what matters to patients and families [51]. The generic measures of PROM such as the 36-item Short-Form Health Survey (SF-36), and palliative care-specific PROMs such as the Palliative Care Outcome Scale (POS) [52], could serve as palliative care indicators along with the previously mentioned physical measures. In a previous report, generic measures were easily applicable in heart disease [53]. Palliative care-specific measures can evaluate symptoms objectively in heart disease [54]. Further heart disease-specific measures such as the Minnesota Living with Heart Failure Questionnaire (MLHFQ) and the Kansas City Cardiomyopathy Questionnaire (KCCQ) for heart failure have evidence for use as PROMs [55]. Detailed and
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specific symptom measurements could serve as outcome measures. Specifically in the final week of care, Raijmakers et al. defined a high quality of care as 75% of palliative patients achieving a global pain score of 0–1 and no increase of other symptom scales in the final week of life [34]. No specific numerical value has been established to determine a high quality of care in heart disease palliative care settings, although some of these scores and scales could be applicable. As mentioned above, these evaluations should be documented. Second, questionnaires and interviews of family members could be potential outcome indicators in palliative care. The NQF has endorsed the Bereaved Family Survey and Family Evaluation of Hospice Care as indicators of end-of-life palliative care [12]. Other validated family surveys such as the Care Evaluation Scale are also available [56]. The use of these assessments should be further validated as quality indicators in palliative care for heart disease [57]. Finally, Nakazawa and Hui et al. selected the place of death as an indicator, which could also be a potential indicator for heart disease [18,57]. Raijmakers et al. further selected ‘‘fewer than 4% of all patients who died from cancer admitted to the ICU in the last 30 days of life’’ as an indicator [34]. As previously mentioned, the preferred place of death should be discussed with patients and family using informed consent/advance care planning/shared decision making. Until appropriate data have been analyzed, the cut-off value for ICU death of 4% cannot be applied directly to heart disease.
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We report a narrative overview of quality indicators of palliative care in heart disease patients, and summarize seven categories of indicators. Many indicators that have been developed in cancer patients may also be applicable in heart disease. Further expert discussions are necessary to implement potential quality indicators in clinical practice.
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Conflicts of interest [22]
There are no conflicts of interest to declare. [23]
Acknowledgment This research is supported by the ‘‘Practical Research Project for Lifestyle-related Diseases including Cardiovascular Diseases and Diabetes Mellitus’’ from the Japan Agency for Medical Research and Development, AMED.
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Appendix A. Supplementary data [28]
Supplementary data associated with this article can be found, in the online version, at doi:10.1016/j.jjcc.2017.02.010.
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Please cite this article in press as: Mizuno A, et al. Potential palliative care quality indicators in heart disease patients: A review of the literature. J Cardiol (2017), http://dx.doi.org/10.1016/j.jjcc.2017.02.010