Clinician responses to legal requests for hastened death: a systematic review and meta-synthesis of qualitative research.

BACKGROUND: The legalisation of medical assistance in dying in numerous countries over the last 20 years represents a significant shift in practice and scope for many clinicians who have had little-to-no training to prepare them to sensitively respond to patient requests for hastened death. AIMS: Our objective was to review the existing qualitative literature on the experiences of healthcare providers responding to requests for hastened death with the aim of answering the question: how do clinicians make sense of, and respond to patients' expressed wishes for hastened death? METHODS: We performed a systematic review and meta-synthesis of primary qualitative research articles that described the experiences and perspectives of healthcare professionals who have responded to requests for hastened death in jurisdictions where MAiD (Medical Assistance in Dying) was legal or depenalised. A staged coding process was used to identify and analyse core themes. RESULTS: Although the response to requests for hastened death varied case-by-case, clinicians formulated their responses by considering seven distinct domains. These include: policies, professional identity, commitment to patient autonomy, personal values and beliefs, the patient-clinician relationship, the request for hastened death and the clinician's emotional and psychological response. CONCLUSION: Responding to a request for hastened death can be an overwhelming task for clinicians. An approach that takes into consideration the legal, personal, professional and patient perspectives is required to provide a response that encompasses all the complexities associated with such a monumental request.

A basic model for assessing primary health care electronic medical record data quality.

BACKGROUND: The increased use of electronic medical records (EMRs) in Canadian primary health care practice has resulted in an expansion of the availability of EMR data. Potential users of these data need to understand their quality in relation to the uses to which they are applied. Herein, we propose a basic model for assessing primary health care EMR data quality, comprising a set of data quality measures within four domains. We describe the process of developing and testing this set of measures, share the results of applying these measures in three EMR-derived datasets, and discuss what this reveals about the measures and EMR data quality. The model is offered as a starting point from which data users can refine their own approach, based on their own needs. METHODS: Using an iterative process, measures of EMR data quality were created within four domains: comparability; completeness; correctness; and currency. We used a series of process steps to develop the measures. The measures were then operationalized, and tested within three datasets created from different EMR software products. RESULTS: A set of eleven final measures were created. We were not able to calculate results for several measures in one dataset because of the way the data were collected in that specific EMR. Overall, we found variability in the results of testing the measures (e.g. sensitivity values were highest for diabetes, and lowest for obesity), among datasets (e.g. recording of height), and by patient age and sex (e.g. recording of blood pressure, height and weight). CONCLUSIONS: This paper proposes a basic model for assessing primary health care EMR data quality. We developed and tested multiple measures of data quality, within four domains, in three different EMR-derived primary health care datasets. The results of testing these measures indicated that not all measures could be utilized in all datasets, and illustrated variability in data quality. This is one step forward in creating a standard set of measures of data quality. Nonetheless, each project has unique challenges, and therefore requires its own data quality assessment before proceeding.

Institutional non-participation in assisted dying: Changing the conversation.

Whether institutions and not just individual doctors have a right to not participate in medical assistance in dying (MAID) is controversial, but there is a tendency to frame the issue of institutional non-participation in a particular way. Conscience is central to this framing. Non-participating health centres are assumed to be religious and full participation is expected unless a centre objects on conscience grounds. In this paper we seek to reframe the issue. Institutional non-participation is plausibly not primarily, let alone exclusively, about conscience. We seek to reframe the issue by making two main points. First, institutional non-participation is primarily a matter of institutional self-governance. We suggest that institutions have a natural right of self-governance which, in the case of health centres such as hospitals or hospices, includes the right to choose whether or not to offer MAID. Second, there are various legitimate reasons unrelated to conscience for which a health centre might not offer MAID. These range from considerations such as institutional capacity and expertise to a potential contradiction with palliative care and a concern to not conflate palliative care and MAID in public consciousness. It is a mistake to frame the conversation simply in terms of conscience-based opposition to MAID or full participation. Our goal is to open up new space in the conversation, for reasons unrelated to conscience as well as for non-religious health centres who might nonetheless have legitimate grounds for not participating in MAID.

Content Validity of a Conceptual Model of a Palliative Approach.

BACKGROUND: The term "palliative approach" has emerged to connote healthcare activities provided consistent with the philosophy of palliative care, but not limited to specialized care providers or settings. A rigorous understanding of the palliative approach requires a conceptual model, which links the philosophy of palliative care to specific actions of practitioners, and is applicable to patients with any life-threatening illness, at any point on the disease trajectory, and provided by any care provider in any setting. This article proposes a conceptual model asserting that a palliative approach exists when care simultaneously addresses whole-person needs, enhances quality of life, and acknowledges mortality. OBJECTIVE: To test the content validity of the proposed model against definitions of palliative care in existing literature. DESIGN: Electronic and manual literature searches identified definitions of palliative care and palliative approach. Two authors independently conducted thematic analysis to assess congruence with the domains of the proposed conceptual model. RESULTS: Nineteen definitions were identified. The three domains were represented in the majority: whole-person care (17/19), quality-of-life focus (17/19), and mortality acknowledgement (15/19). Published definitions also included other concepts, but only one of these (family within the unit of care) appeared in more than a few definitions. CONCLUSIONS: The content validity of the proposed conceptual model is supported by the consistent presence of the three domains in published definitions. This conceptual model bridges philosophical definitions and clinician behavior and has potential to inform broad implementation of a palliative approach, at both clinic and system levels.

Beyond Simple Planning: Existential Dimensions of Conversations With Patients at Risk of Dying From Heart Failure.

CONTEXT: Despite the recent promotion of communication guides to improve decision making with patients nearing the end of their lives, these conversations remain challenging. Deeper and more comprehensive understanding of communication barriers that undermine discussions and decisions with patients at risk of dying from heart failure (HF) is vital for informing communication in health care. OBJECTIVES: To explore experiences and perspectives of patients with advanced HF, their caregivers, and providers, regarding conversations for patients at risk of dying from HF. METHODS: Following Research Ethics Board approval, index patients with advanced HF (New York Heart Association III or IV) and consenting patient-identified care team members were interviewed. A team sampling unit was formed when the patient plus at least two additional team members participated in interviews. Team members included health professionals (e.g., cardiologist, family physician, HF nurse practitioner, social worker, and specialists, such as respirologist, nephrologist, palliative care physician), family caregivers (e.g., daughter, spouse, roommate, close friend), and community members (e.g., minister, neighbor, regular taxi driver). Our data set included 209 individual interviews clustered into 50 team sampling units at five sites from three Canadian provinces. Key informants, identified as practicing experts in the field, reviewed our initial findings with attention to relevance to practice as a form of triangulation. Iterative data collection and analysis followed constructivist grounded theory procedures with sensitizing concepts drawn from complexity theory. To ensure confidentiality, all participants were given a pseudonym. RESULTS: Participants' reports of their perceptions and experiences of conversations related to death and dying suggested two main dimensions of such conversations: instrumental and existential. Instrumental dimensions included how these conversations were planned and operationalized as well as the triggers and barriers to these discussions. Existential dimensions of these conversations included evasive maneuvers, powerful emotions, and the phenomenon of death without dying. Existential dimensions appeared to have a basis in issues of mortality and could strongly influence conversations related to death and dying. CONCLUSION: Conversations for patients at risk of dying from HF have both instrumental and existential dimensions, in which routines and relationships are inseparable. Our current focus on the instrumental aspects of these conversations is necessary but insufficient. The existential dimensions of conversations related to death are profound and may explain why these conversations have struggled to achieve their desired effect. To improve this communication, we need to also attend to existential dimensions, particularly in terms of their impact on the occurrence of these conversations, the nature of relationships and responses within these conversations, and the fluidity of meaning within these conversations.

Understanding bladder management on a palliative care unit: a grounded theory study.

BACKGROUND: Research regarding factors associated with nursing-initiated changes to bladder management at end-of-life is sparse. OBJECTIVES: To explore the process of Palliative Care Unit (PCU) nurses' approach to bladder management changes. METHODS: Nursing staff from one PCU in London, Canada were interviewed regarding bladder management care practices. A constructivist grounded theory was generated. RESULTS: Four interconnected themes emerged: humanity (compassionate support of patients); journey (making the most of a finite timeline); health condition (illness, functional decline); and context (orders, policies, supplies). These overlapping themes must be considered in light of ongoing changes which prompt recycling through the framework. While bladder management necessitates shared decision-making and individualised care, nurses' phronetic experience may serve to detect the presence of change and the need to consider other alternatives. CONCLUSION: End-of-life bladder management requires nurses to continually reconsider the significance of humanity, journey, health condition and context in light of ongoing changes.

Methods to Describe Referral Patterns in a Canadian Primary Care Electronic Medical Record Database: Modelling Multilevel Count Data.

BACKGROUND:   A referral from a family physician (FP) to a specialist is an inflection point in the patient journey, with potential implications for clinical outcomes and health policy. Primary care electronic medical record (EMR) databases offer opportunities to examine referral patterns. Until recently, software techniques were not available to model these kinds of multi-level count data. OBJECTIVE:  To establish methodology for determining referral rates from FPs to medical specialists using the Canadian Primary Care Sentinel Surveillance Network (CPCSSN) EMR database. METHOD: Retrospective cohort study, mixed effects and multi-level negative binomial regression modelling with 87,258 eligible patients between 2007 and 2012. Mean referrals compared by patient sex, age, chronic conditions, FP visits, and urban/rural practice location.  Proportion of variance in referral rates attributable to the patient and practice levels. RESULTS:  On average, males had 0.26, and females 0.31 referrals in a 12-month period.  Referrals were significantly higher for females, increased with age, FP visits, and number of chronic conditions (p<.0001). Overall, 14% of the variance in referrals could be attributed to the practice level, and 86% to patient level characteristics. CONCLUSIONS:  Both patient and practice characteristics influenced referral patterns. The methodologic insights gained from this study have relevance to future studies on many research questions that utilize count data, both within primary care and broader health services research. The utility of the CPCSSN database will continue to increase in tandem with data quality improvements, providing a valuable resource to study Canadian referral patterns over time.

Urinary Retention and Medication Utilization on a Palliative Care Unit: A Retrospective Observational Study.

Urinary retention is a common problem at end-of-life that may be a result of medications used to control other symptoms. To determine whether use of retention-causing drugs was associated with catheterization for urinary retention among palliative care unit (PCU) patients, the authors reviewed charts of 91 consecutively admitted patients to a hospital-based PCU. Utilization of eight classes of retention-causing medications (opioids, antidopaminergics, benzodiazepines, anticholinergics, antidepressants, calcium channel antagonists, nonsteroidal anti-inflammatory drugs [NSAIDs], and H1 histamine antagonists) was compared between those catheterized for urinary retention (n = 34) and those never catheterized (n = 31). All patients used medication from more than one class of retention-causing medication. A statistically significant association with urinary retention occurred for antidopaminergic medications, but not other drug classes. The total number of classes of retention-causing medications was not associated with catheterization. These findings question whether urinary retention need hinder medication use for symptom management at end-of-life. Tapering of antidopaminergic medications, compared with other drug classes studied, may be more likely to resolve retention.

Understanding palliative care on the heart failure care team: an innovative research methodology.

CONTEXT: There is a growing call to integrate palliative care for patients with advanced heart failure (HF). However, the knowledge to inform integration efforts comes largely from interview and survey research with individual patients and providers. This work has been critically important in raising awareness of the need for integration, but it is insufficient to inform solutions that must be enacted not by isolated individuals but by complex care teams. Research methods are urgently required to support systematic exploration of the experiences of patients with HF, family caregivers, and health care providers as they interact as a care team. OBJECTIVES: To design a research methodology that can support systematic exploration of the experiences of patients with HF, caregivers, and health care providers as they interact as a care team. METHODS: This article describes in detail a methodology that we have piloted and are currently using in a multisite study of HF care teams. RESULTS: We describe three aspects of the methodology: the theoretical framework, an innovative sampling strategy, and an iterative system of data collection and analysis that incorporates four data sources and four analytical steps. CONCLUSION: We anticipate that this innovative methodology will support groundbreaking research in both HF care and other team settings in which palliative integration efforts are emerging for patients with advanced nonmalignant disease.

Prognosticating in palliative care: a survey of Canadian palliative care physicians.

OBJECTIVE: To determine how palliative care physicians view the accuracy and importance of prognostication, what information they consider, and what processes they use. METHODS: A questionnaire was sent to members of the Canadian Society of Palliative Care Physicians (CSPCP). Respondents recorded their perceptions about prognostication and the factors they considered when predicting survival. A patient scenario was described in which a prognosis was requested by two different people: a patient's daughter and a palliative care admissions coordinator. RESULTS: 90 responses were received from 219 CSPCP members (41.1 percent). There was moderate agreement between respondents' perceptions of their own accuracy and that of other physicians (K = 0.549). Of all the respondents, 89.9 percent believed that prognosticating was somewhat or very important. They considered clinical factors most commonly when prognosticating. A range of predictions was given for the scenario; often, the same physician gave different answers to the two people requesting a prognosis. CONCLUSION: Palliative care physicians believe that prognostication is important and use clinical factors to estimate survival. They often give different estimates to different information recipients.

Patterns of referral in a Canadian primary care electronic health record database: retrospective cross-sectional analysis.

BACKGROUND: Databases derived from primary care electronic health records (EHRs) are ideally suited to study clinical influences on referral patterns. This is the first study outside the United Kingdom to use an EHR database to describe rates of referral per patient from family physicians to specialists. OBJECTIVE: To use a primary care EHR database to describe referrals to specialist physicians; to partition variance in referral rates between the practice and patient levels. METHODS: Retrospective cross-sectional analysis of de-identified EHRs of 33 998 patients from 10 primary care practices in Ontario, Canada. The study cohort included all patients who visited their family physician 1 April 2007 to 31 March 2008 (n ≥ 24856). Specialist referrals for each patient were counted for 12 months following their index visit. Rates of referral were compared by sex, age, number of office visits, practice location and specialist type using t-tests or Pearson's correlation. Variance partitioning determined the proportion of variance in the overall referral rate accounted for by the practice and patient levels. RESULTS: In total, 7771 patients (31.3%) had one or more referrals. The overall referral rate was 455/1000 patients/year (95% CI, 444-465). Rates were higher for females, older patients and rural practices. The referral rate correlated with the number of family physician office visits. Ninety-two percent of the total variance in referral rates was attributable to the patient (vs. practice) level. CONCLUSIONS: A Canadian primary care EHR database showed similar patterns of referral to those reported from administrative databases. Most variance in referral rates is explained at the patient level.