The purpose of this study was to examine the effect of proactive palliative care consultation on ... more The purpose of this study was to examine the effect of proactive palliative care consultation on length of stay for high-risk patients in the medical intensive care unit (MICU). A prospective pre/post nonequivalent control group design was used for this performance improvement study. Seventeen-bed adult MICU. Of admissions to the MICU, 191 patients were identified as having a serious illness and at high risk of dying: 65 patients in the usual care phase and 126 patients in the proactive palliative care phase. To be included in the sample, a patient had to meet one of the following criteria: a) intensive care admission following a current hospital stay of >or=10 days; b) age >80 yrs in the presence of two or more life-threatening comorbidities (e.g., end-stage renal disease, severe congestive heart failure); c) diagnosis of an active stage IV malignancy; d) status post cardiac arrest; or e) diagnosis of an intracerebral hemorrhage requiring mechanical ventilation. Palliative care consultations. Primary measures were patient lengths of stay a) for the entire hospitalization; b) in the MICU; and c) from MICU admission to hospital discharge. Secondary measures included mortality rates and discharge disposition. There were no significant differences between the usual care and proactive palliative care intervention groups in respect to age, gender, race, screening criteria, discharge disposition, or mortality. Patients in the proactive palliative care group had significantly shorter lengths of stay in the MICU (8.96 vs. 16.28 days, p = .0001). There were no differences between the two groups on total length of stay in the hospital or length of stay from MICU admission to hospital discharge. Proactive palliative care consultation was associated with a significantly shorter MICU length of stay in this high-risk group without any significant differences in mortality rates or discharge disposition.
Background: The 2014 Institute of Medicine report recommended that healthcare providers caring fo... more Background: The 2014 Institute of Medicine report recommended that healthcare providers caring for individuals with advanced illness have basic palliative care competencies in communication, inter-professional collaboration, and symptom management. Nursing homes, where one in three American decedents live and die, have fallen short of these competency goals. We implemented an intervention study to examine the efficacy of nursing home-based integrated palliative care teams in improving the quality of care processes and outcomes for residents at the end of life. Methods/design: This paper describes the design, rationale, and challenges of a two-arm randomized controlled trial of nursing home-based palliative care teams in 31 facilities. The impact of the intervention on residents' outcomes is measured with four risk-adjusted quality indicators: place of death (nursing home or hospital), number of hospitalizations, and self-reported pain and depression in the last 90-days of life. The effect of the intervention is also evaluated with regard to staff satisfaction and impact on care processes (e.g. palliative care competency, communication, coordination). Both secondary (e.g. the Minimum Data Set) and primary (e.g. staff surveys) data are employed to examine the effect of the intervention. Discussion: Several challenges in conducting a complex, nursing home-based intervention have been identified. While sustainability of the intervention without research funding is not clear, we surmise that without changes to the payment model that put palliative care services in this care setting on par with the more "skilled" care, it will not be reasonable to expect any widespread efforts to implement facility-based palliative care services.
Prognostic communication is a primary component of goals of care conversations in palliative care... more Prognostic communication is a primary component of goals of care conversations in palliative care (PC) practice. Little is known about these conversations in the natural setting. This study's aim was to describe the processes of prognostic communication in PC goals of care consultations. Using line-by-line qualitative analysis, we examined prognostic conversation in 66 audio-taped PC consultations. We identified five processes by which clinicians link prognoses, values, and goals of care: (1) signposting the crossroads; (2) closing off a goal; (3) clarifying current path; (4) linking paths and patients' values; and (5) choosing among paths. The findings add to our understanding of PC consultation by describing how prognoses link with patients' values and choices in goals of care conversations.
Carolina Digital Repository (University of North Carolina at Chapel Hill), 2014
Background: Seriously ill hospitalized patients and their loved ones are frequently faced with co... more Background: Seriously ill hospitalized patients and their loved ones are frequently faced with complex treatment decisions laden with expressions of emotional distress during palliative care (PC) consultations. Little is known about these emotional expressions or the compassionate responses providers make and how common these are in PC decision-making conversations. Objectives: To describe the types and frequency of emotional distress that patients and loved ones express and how providers respond to these emotions during PC decision-making consultations with seriously ill hospitalized patients. Methods: We used a quantitative descriptive approach to analyze 71 audio-recorded inpatient PC decisionmaking consultations for emotional distress and clinicians' responses to those emotions using reliable and established methods. Results: A total of 69% of conversations contained at least one expression of emotional distress. The perconversation frequency of expressions of emotional distress ranged from 1 to 10. Anxiety/fear were the most frequently encountered emotions (48.4%) followed by sadness (35.5%) and anger/frustration (16.1%). More than half of the emotions related to the patient's feelings (53.6%) and 41.9% were related to the loved ones' own emotions. The majority of emotions were moderate in intensity (65.8%) followed by strong (20.7%) and mild (13.5%). Clinicians responded to a majority of emotions with a compassionate response (75.7%) followed by those with medical content (21.9%) and very few were ignored (1.3%). Conclusions: Expressions of emotional distress are common during PC consultations and are usually met with compassionate responses by the clinician.
Journal of Pain and Symptom Management, Feb 1, 2013
Result. Layers of multiple and often conditional prognoses were interwoven with patient values an... more Result. Layers of multiple and often conditional prognoses were interwoven with patient values and goals to help convey to patients that their current illness path would not deliver them to their hoped for destination. Using the travel language grounded in the data, we found six main processes which were often combined: A) locating the patient on the path, B) looking ahead to path destinations, C) creating new destinations, D) changing paths and identifying crossroads, E) the experience (eg, speed and difficulty) of the path, and F) linking with patient values and goals. Participants contextualized the favorable or unfavorable direction of potential paths and destinations on the concordance with patient's values and clinically feasible goals. Conclusion. Prognostic conversations established connections between patients' clinical conditions, possible treatment options, how treatments might be experienced, and their likely outcomes. These processes allowed for nuanced discussions of patients' goals in the context of clinical feasibility. Implications for Research, Policy, or Practice. These findings provide important glimpses into how palliative care clinicians, seriously ill patients, and families address prognosis in active pursuit patient-centered care.
Journal of Hospice & Palliative Nursing, Apr 1, 2017
Now more than ever, it is essential for hospice and palliative care nurse leaders to be front and... more Now more than ever, it is essential for hospice and palliative care nurse leaders to be front and center in the quality improvement (QI) arena. Because nurses are integral to the delivery of hospice and palliative care, they are pivotal in efforts to improve quality. This article sought to provide an in-depth understanding of the leadership role that nurses can play in QI activities from project inception and team formation, to the planning stage. The analysis revealed that hospice and palliative care nurses have a leadership role at the onset of the QI project that includes active team membership as a QI team leader, team member, and/or champion. Nurses also have a leadership role in formulating the project aims and choosing the appropriate project model within their organizations. Finally, hospice and palliative care nurses use their planning skills to develop QI project measures, data collection plan, data analysis plan, and communication/implementation/evaluation plan. The QI project provides opportunities for hospice and palliative care nurse leaders to use their clinical, technical, and administrative knowledge to improve the care of patients and families at the end of life.
Prognostic uncertainty is common in advanced cancer and frequently addressed during palliative ca... more Prognostic uncertainty is common in advanced cancer and frequently addressed during palliative care consultation, yet we know little about its impact on quality of life (QOL). We describe the prevalence and distribution of distress due to prognostic uncertainty among hospitalized patients with advanced cancer before palliative care consultation. We evaluate the association between this type of distress and overall QOL before and after palliative care consultation. Observational cohort study. Hospitalized patients with advanced cancer who receive a palliative care consultation at two geographically distant academic medical centers. At the time of enrollment, before palliative care consultation, we asked participants: "Over the past two days, how much have you been bothered by uncertainty about what to expect from the course of your illness?" (Not at all/Slightly/Moderately/Quite a Bit/Extremely). We defined responses of "Quite a bit" and "Extremely" to be indicative of substantial distress. Two hundred thirty-six participants completed the baseline assessment. Seventy-seven percent reported being at least moderately bothered by prognostic uncertainty and half reported substantial distress. Compared with others, those who were distressed by prognostic uncertainty (118/236) reported poorer overall QOL before palliative care consultation (mean QOL 3.8 out of 10 vs. 5.3 out of 10, p = < 0.001) and greater improvement in QOL following consultation (Adjusted difference in mean QOL change = 1.1; 95% confidence interval = 0.2, 2.0). Prognostic uncertainty is a prevalent source of distress among hospitalized patients with advanced cancer at the time of initial palliative care consultation. Distress from prognostic uncertainty is associated with lower levels of preconsultation QOL and with greater pre-post consultation improvement in the QOL.
The purpose of this study was to examine the effect of proactive palliative care consultation on ... more The purpose of this study was to examine the effect of proactive palliative care consultation on length of stay for high-risk patients in the medical intensive care unit (MICU). A prospective pre/post nonequivalent control group design was used for this performance improvement study. Seventeen-bed adult MICU. Of admissions to the MICU, 191 patients were identified as having a serious illness and at high risk of dying: 65 patients in the usual care phase and 126 patients in the proactive palliative care phase. To be included in the sample, a patient had to meet one of the following criteria: a) intensive care admission following a current hospital stay of >or=10 days; b) age >80 yrs in the presence of two or more life-threatening comorbidities (e.g., end-stage renal disease, severe congestive heart failure); c) diagnosis of an active stage IV malignancy; d) status post cardiac arrest; or e) diagnosis of an intracerebral hemorrhage requiring mechanical ventilation. Palliative care consultations. Primary measures were patient lengths of stay a) for the entire hospitalization; b) in the MICU; and c) from MICU admission to hospital discharge. Secondary measures included mortality rates and discharge disposition. There were no significant differences between the usual care and proactive palliative care intervention groups in respect to age, gender, race, screening criteria, discharge disposition, or mortality. Patients in the proactive palliative care group had significantly shorter lengths of stay in the MICU (8.96 vs. 16.28 days, p = .0001). There were no differences between the two groups on total length of stay in the hospital or length of stay from MICU admission to hospital discharge. Proactive palliative care consultation was associated with a significantly shorter MICU length of stay in this high-risk group without any significant differences in mortality rates or discharge disposition.
Background: The 2014 Institute of Medicine report recommended that healthcare providers caring fo... more Background: The 2014 Institute of Medicine report recommended that healthcare providers caring for individuals with advanced illness have basic palliative care competencies in communication, inter-professional collaboration, and symptom management. Nursing homes, where one in three American decedents live and die, have fallen short of these competency goals. We implemented an intervention study to examine the efficacy of nursing home-based integrated palliative care teams in improving the quality of care processes and outcomes for residents at the end of life. Methods/design: This paper describes the design, rationale, and challenges of a two-arm randomized controlled trial of nursing home-based palliative care teams in 31 facilities. The impact of the intervention on residents' outcomes is measured with four risk-adjusted quality indicators: place of death (nursing home or hospital), number of hospitalizations, and self-reported pain and depression in the last 90-days of life. The effect of the intervention is also evaluated with regard to staff satisfaction and impact on care processes (e.g. palliative care competency, communication, coordination). Both secondary (e.g. the Minimum Data Set) and primary (e.g. staff surveys) data are employed to examine the effect of the intervention. Discussion: Several challenges in conducting a complex, nursing home-based intervention have been identified. While sustainability of the intervention without research funding is not clear, we surmise that without changes to the payment model that put palliative care services in this care setting on par with the more "skilled" care, it will not be reasonable to expect any widespread efforts to implement facility-based palliative care services.
Prognostic communication is a primary component of goals of care conversations in palliative care... more Prognostic communication is a primary component of goals of care conversations in palliative care (PC) practice. Little is known about these conversations in the natural setting. This study's aim was to describe the processes of prognostic communication in PC goals of care consultations. Using line-by-line qualitative analysis, we examined prognostic conversation in 66 audio-taped PC consultations. We identified five processes by which clinicians link prognoses, values, and goals of care: (1) signposting the crossroads; (2) closing off a goal; (3) clarifying current path; (4) linking paths and patients' values; and (5) choosing among paths. The findings add to our understanding of PC consultation by describing how prognoses link with patients' values and choices in goals of care conversations.
Carolina Digital Repository (University of North Carolina at Chapel Hill), 2014
Background: Seriously ill hospitalized patients and their loved ones are frequently faced with co... more Background: Seriously ill hospitalized patients and their loved ones are frequently faced with complex treatment decisions laden with expressions of emotional distress during palliative care (PC) consultations. Little is known about these emotional expressions or the compassionate responses providers make and how common these are in PC decision-making conversations. Objectives: To describe the types and frequency of emotional distress that patients and loved ones express and how providers respond to these emotions during PC decision-making consultations with seriously ill hospitalized patients. Methods: We used a quantitative descriptive approach to analyze 71 audio-recorded inpatient PC decisionmaking consultations for emotional distress and clinicians' responses to those emotions using reliable and established methods. Results: A total of 69% of conversations contained at least one expression of emotional distress. The perconversation frequency of expressions of emotional distress ranged from 1 to 10. Anxiety/fear were the most frequently encountered emotions (48.4%) followed by sadness (35.5%) and anger/frustration (16.1%). More than half of the emotions related to the patient's feelings (53.6%) and 41.9% were related to the loved ones' own emotions. The majority of emotions were moderate in intensity (65.8%) followed by strong (20.7%) and mild (13.5%). Clinicians responded to a majority of emotions with a compassionate response (75.7%) followed by those with medical content (21.9%) and very few were ignored (1.3%). Conclusions: Expressions of emotional distress are common during PC consultations and are usually met with compassionate responses by the clinician.
Journal of Pain and Symptom Management, Feb 1, 2013
Result. Layers of multiple and often conditional prognoses were interwoven with patient values an... more Result. Layers of multiple and often conditional prognoses were interwoven with patient values and goals to help convey to patients that their current illness path would not deliver them to their hoped for destination. Using the travel language grounded in the data, we found six main processes which were often combined: A) locating the patient on the path, B) looking ahead to path destinations, C) creating new destinations, D) changing paths and identifying crossroads, E) the experience (eg, speed and difficulty) of the path, and F) linking with patient values and goals. Participants contextualized the favorable or unfavorable direction of potential paths and destinations on the concordance with patient's values and clinically feasible goals. Conclusion. Prognostic conversations established connections between patients' clinical conditions, possible treatment options, how treatments might be experienced, and their likely outcomes. These processes allowed for nuanced discussions of patients' goals in the context of clinical feasibility. Implications for Research, Policy, or Practice. These findings provide important glimpses into how palliative care clinicians, seriously ill patients, and families address prognosis in active pursuit patient-centered care.
Journal of Hospice & Palliative Nursing, Apr 1, 2017
Now more than ever, it is essential for hospice and palliative care nurse leaders to be front and... more Now more than ever, it is essential for hospice and palliative care nurse leaders to be front and center in the quality improvement (QI) arena. Because nurses are integral to the delivery of hospice and palliative care, they are pivotal in efforts to improve quality. This article sought to provide an in-depth understanding of the leadership role that nurses can play in QI activities from project inception and team formation, to the planning stage. The analysis revealed that hospice and palliative care nurses have a leadership role at the onset of the QI project that includes active team membership as a QI team leader, team member, and/or champion. Nurses also have a leadership role in formulating the project aims and choosing the appropriate project model within their organizations. Finally, hospice and palliative care nurses use their planning skills to develop QI project measures, data collection plan, data analysis plan, and communication/implementation/evaluation plan. The QI project provides opportunities for hospice and palliative care nurse leaders to use their clinical, technical, and administrative knowledge to improve the care of patients and families at the end of life.
Prognostic uncertainty is common in advanced cancer and frequently addressed during palliative ca... more Prognostic uncertainty is common in advanced cancer and frequently addressed during palliative care consultation, yet we know little about its impact on quality of life (QOL). We describe the prevalence and distribution of distress due to prognostic uncertainty among hospitalized patients with advanced cancer before palliative care consultation. We evaluate the association between this type of distress and overall QOL before and after palliative care consultation. Observational cohort study. Hospitalized patients with advanced cancer who receive a palliative care consultation at two geographically distant academic medical centers. At the time of enrollment, before palliative care consultation, we asked participants: "Over the past two days, how much have you been bothered by uncertainty about what to expect from the course of your illness?" (Not at all/Slightly/Moderately/Quite a Bit/Extremely). We defined responses of "Quite a bit" and "Extremely" to be indicative of substantial distress. Two hundred thirty-six participants completed the baseline assessment. Seventy-seven percent reported being at least moderately bothered by prognostic uncertainty and half reported substantial distress. Compared with others, those who were distressed by prognostic uncertainty (118/236) reported poorer overall QOL before palliative care consultation (mean QOL 3.8 out of 10 vs. 5.3 out of 10, p = < 0.001) and greater improvement in QOL following consultation (Adjusted difference in mean QOL change = 1.1; 95% confidence interval = 0.2, 2.0). Prognostic uncertainty is a prevalent source of distress among hospitalized patients with advanced cancer at the time of initial palliative care consultation. Distress from prognostic uncertainty is associated with lower levels of preconsultation QOL and with greater pre-post consultation improvement in the QOL.
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Papers by Sally Norton