Timely Assessment of Breathing-Related Distress in Community Palliative Care: A Multidisciplinary Collaborative Quality Improvement Project

Abstract

Background:

Breathlessness is a common symptom for palliative patients that can cause distress and decrease function and quality of life. Palliative care services in Australia aim to routinely assess patients for breathing-related distress, but timely reassessment is not always achieved.

Objective:

To improve the timeliness of breathlessness reassessment in a home-based community palliative care service in New South Wales for people with moderate-to-severe breathing-related distress. Breathing-related distress was defined as a Symptom Assessment Score for “breathing problems” of four or more.

Methods:

This collaborative quality improvement (QI) project between SPHERE Palliative Care CAG, Stanford University mentors, and a Sydney metropolitan specialist palliative care service included a: (1) retrospective chart audit; (2) cause and effect analyses using a fishbone diagram; (3) development and implementation of key drivers and interventions; and (4) a pre-and-post evaluation of the timeliness of reassessment of breathing-related distress and changes in Symptom Assessment Scale scores for “breathing problems.”

Results:

Key interventions included multidisciplinary education sessions to facilitate buy-in, with nurses as case managers responsible for breathlessness reassessment and documentation of scores, access and training in electronic palliative care data entry software, fortnightly monitoring and reporting of breathing-related distress scores, and development of an educational flowchart. The proportion of patients reassessed within seven days of an initial nursing assessment of moderate-to-severe breathing-related distress increased from 34% at baseline to 92% at six months.

Conclusion:

A local QI project increased the proportion of patients with a timely reassessment of their breathing-related distress in a community palliative care service.

Background

Breathlessness is a common symptom in palliative care patients that interferes with functional capacity and quality of life and can be a source of distress. In patients with advanced cancer, the risk of mortality is increased by 80% when breathlessness is present. Worldwide, in 2017, marked suffering or distress from breathlessness was experienced for ∼6.6% of all days spent in palliative care settings before death.¹

Chronic breathlessness is systematically underrecognized and undertreated in palliative care, and the impact of breathlessness on individual patients is poorly understood.² A rigorous assessment of breathlessness should include a thorough patient history, examination, and thoughtful investigations to ensure that reversible underlying causes are treated and symptom management is optimized.³ Early integration of palliative care with respiratory, rehabilitation, and primary care services, with referral based on distress from breathlessness and complexity of symptom management is recommended, rather than prognosis.⁴ Models of care need to shift toward the triggering of services or triaging patients based on symptom distress related to refractory breathlessness, and account for short-term admissions earlier in patients' disease trajectory as well as end-of-life care.⁴ Addressing distress from breathlessness is particularly important as pharmacological management, while helpful for physiological aspects of breathlessness, cannot address psychosocial issues related to breathlessness nor the cognitive processes that drive breathlessness.⁴

In 2005, the Palliative Care Outcomes Collaborative (PCOC) introduced the Symptom Assessment Scale (SAS) to Australian palliative care settings to capture distress from common palliative care symptoms, including breathlessness.⁵ Wide implementation of the SAS, other PCOC measures, and national benchmarks have supported individual health services to evaluate clinical outcomes and initiate quality improvement (QI) where required.⁵ A SAS score of >8 leads to a severity score of “unstable” and therefore requiring urgent follow-up (Table 1).⁶ PCOC has clearly defined responsiveness to urgent needs (i.e., 90% of patients in the unstable palliative care phase⁵ having their needs met within three days). People requiring urgent follow-up are identified according to the clinician-rated Palliative Care Problem Severity Score and phase on admission to the service, and are targeted for follow-up within 24 hours as part of usual care. However, there is no specified timeframe to manage moderate distress identified through the SAS. According to the PCOC framework, a patient could remain classified in the “stable” or “deteriorating” phase for some time yet with unaddressed breathing-related distress.

Table 1.

Palliative Care Outcomes Collaboration Phase Definitions⁶

The palliative care phase identifies a clinically meaningful period in a patient's condition. The palliative care phase is determined by a holistic clinical assessment which considers the need of the patients and their family and carers.
Start	End
Stable
Patient problems and symptoms are adequately controlled by established plan of care and Further interventions to maintain symptom control and quality of life have been planned and Family/carer situation is relatively stable and no new issues are apparent.	The needs of the patient and/or family/carer increase, requiring changes to the existing plan of care.
Unstable
An urgent change in the plan of care or emergency treatment is required because Patient experiences a new problem that was not anticipated in the existing plan of care, and/or Patient experiences a rapid increase in the severity of a current problem; and/or Family/carers' circumstances change suddenly impacting on patient care.	The new plan of care is in place, it has been reviewed and no further changes to the care plan are required. This does not necessarily mean that the symptom/crisis has fully resolved but there is a clear diagnosis and plan of care (i.e., patient is stable or deteriorating) and/or Death is likely within days (i.e., patient is now terminal).
Deteriorating
The care plan is addressing anticipated needs but requires periodic review because Patient's overall functional status is declining and/or Patient experiences a gradual worsening of existing problem and/or Patient experiences a new but anticipated problem and/or Family/carers experience gradual worsening distress that impacts on patient care.	Patient condition plateaus (i.e., patient is now stable) or An urgent change in the care plan or emergency treatment and/or Family/carers experience a sudden change in their situation that impacts on patient care, and urgent intervention is required (i.e., patient is now unstable) or Death is likely within days (i.e., patient is now terminal).
Terminal
Death is likely within days.	Patient dies or Patient condition changes and death is no longer likely within days (i.e., patient is now stable or deteriorating).
Bereavement—postdeath support
The patient has died Bereavement support provided to family/carers is documented in the deceased patient's clinical record.	Case closure Note: If counseling is provided to a family member or carer, they become a client in their own right.

Or, in the instance of an expected deterioration, symptoms might be medically addressed, yet the patient may still experience breathing-related distress.⁴

The problem of breathing-related distress locally

Recent evidence of significant assessment and response gaps for breathing-related distress was identified in a specialist community palliative care service in metropolitan New South Wales (NSW), Australia. Based on PCOC data between July and December 2020, 98% of patients admitted to the community service experienced breathing problems, yet only 17% received responsive care, well below the national benchmark of 60%.⁷ Responsive care refers to the proportion of patients with moderate-to-severe symptoms at the beginning of the phase who have absent or mild symptoms at the end of the phase.^8,9 In addition, only 22% of patients with moderate-to-severe breathing-related distress (defined as a PCOC score ≥4) on admission had a repeat SAS documented within seven days. As such, we determined that the service not providing adequate responsive care for patients with breathing-related distress in part stemmed from the low rate of timely reassessment. Our QI project therefore aimed to improve the timeliness of breathlessness assessment in a home-based community palliative care service in NSW.

Objective

Between February and August 2021, our first objective was to increase the proportion of patients with a moderate or severe PCOC SAS score (≥4) for “breathing problems” on admission to community palliative care services who had a repeated PCOC SAS score for “breathing problems” completed by any member of the multidisciplinary team within seven days from 34% to 90%. Other objectives were to assess changes in breathing-related distress scores among those with moderate-to-severe breathing-related distress on admission. As there was no clearly defined timeframe for repeat assessment of patients with moderate breathing-related distress, a target of seven days for reassessment was decided by consensus within the project team and aligned with weekly multidisciplinary team review of individual patients.⁹

Methods

Design

This QI project included a retrospective chart audit, cause and effect analyses, development and implementation of key drivers and interventions, and a pre-and-post outcome assessment of scores for “breathing problems” among those identified with moderate-to-severe breathing-related distress. The project is reported according to the Revised Standards for Quality Improvement Reporting Excellence (SQUIRE) Checklist version 2.0.¹⁰

Setting/context

The project was undertaken in one Australian specialist community palliative care service between February and August 2021. The service provides care to ∼250 patients and is predominately a Clinical Nurse Specialist-led service with a strong multidisciplinary team. The proportion of patients who speak a language other than English at home within the local health district is higher than the national average (21%),¹¹ yet lower than other Sydney metropolitan local health districts (46%–71%).^12,13 The project was part of an international collaborative program involving Stanford University, California and the Australian SPHERE Palliative Care Clinical Academic Group. The QI team included a clinical nurse specialist and researcher, physiotherapist, doctor, occupational therapist, nurse practitioner, and palliative care and QI researchers as mentors.

QI process

The project involved a process of monthly one- to two-hour remote mentorship sessions with Stanford University mentors (J.M. and M.D.) through Zoom teleconferencing, didactic instruction, and project-based learning in QI. These mentors guided each online session using an A3 template, based on “Plan-Do-Study-Act” method, which uses a small scale, iterative approach to testing solutions that allows rapid assessment and feedback and the flexibility to adapt to changes that align with the clinical context.¹⁴ An overview of the course structure and process is provided in Table 2.

Table 2.

Stanford University and SPHERE Palliative Care Clinical Academic Group Collaborative Quality Improvement Project Road Map

Month	Learning topics	Team milestone
Prework	Building the Collaborative Project topics are chosen. All local teams confirmed with designated mentors.	Project Identified and Team Formed
February	Introduction to Structured Problem Solving and Team Roles Videoconference covering problem statements, setting measure-driven targets, and team roles	Target Defined
March	Current State Analysis and Measurement Videoconference covering state analysis tools and measurement systems	Measurement Identified
April	Extended Learning Session Topics to include root cause analysis, evidence-based improvement, identifying key drivers and interventions, change management, understanding data variation, adaptive leadership	Root Cause Analysis Performed
May	Project and Team Management Videoconference covering managing projects, interventions, and measures.	Interventions planned and Tested
June	Reliability of Interventions and Adoption of Changes Videoconference covering reliability of interventions, data collection, and results calculation	Interventions planned and Tested
July	Sustain Plan Development Videoconference covering sustain plan development and presenting improvement work	Sustain Plan Documented
August	Graduation Presentation and Closing All teams present final project results and share key learnings from the collaborative. Writing groups are formed and projects are considered for publication.	Final Presentation

Cause and effect analysis using a fishbone diagram identified measurement, material, environmental methodological and personnel factors related to the problem (Fig. 1 and Table 3). Weights (%) were assigned to factors considered modifiable within the scope of the project, termed “key drivers.”

FIG. 1.

Cause and effect diagram.

Table 3.

Analysis of Root Causes of Delays in Breathlessness ReAssessment Within Seven Days

Effect: Delays (>7 days) in the reassessment of moderate-to-extremely-severe breathlessness SAS scores
Cause category	Cause
Measurement	Should all clinicians be entering scores on PalCentre?
	What measure should we use? PCOC SAS? BTF Assessment?
	Who should complete BTF assessment? Physiotherapist? Nursing?
	Which patients should we use BTF on? Moderate to severely breathless or all patients?
Environment	Resourcing of allied health professionals—immediate issues prioritized (end-of-life care, falls management)
Environment	Variable to inconsistent capacity to prioritize scores in the lower to moderate range due to competing crises
Methods	No automated referral process for moderate SAS breathlessness score (≥4)
	Allied health uses a paper-based referral system
	Training needed on how to enter PCOC scores into PalCentre software
	No benchmark time point for repeat breathlessness assessment for nonurgent cases.
	The need for breathlessness assessment and management is unclear on referrals to allied health
	No habitual practice entering scores
Materials	Technological issues of access to PalCentre software to enter scores
Materials	Discussion of the use of an app/laptop to facilitate ease of data entry—staff have laptops, but the software is clunky and slow to load while on the road
Personnel	Screening delays due to part time allied health and medical staff
Personnel	Workload—staff shortages

BTF, Breathing, Thinking, Functioning; PCOC, Palliative Care Outcomes Collaborative.

Interventions were developed by the project team to address these key drivers. The sustainability of each intervention was considered and promoted by designating the method, frequency, and personnel for sustainability activities. Reliability of interventions was categorized as Level 1: Individuals (feedback, checklists, training and basic standards); Level 2: Procedures (embedded standard work, reminders, constraints); or Level 3: Systems (process design, fail safes, physical layout, built in feedback, automated systems, concentration of responsibility). “Maturity bars” denoted progress of each intervention as (0) an untested idea, (1) early tests/Plan, Do, Check, Act; (2) multiple levels; (3) early implementation; and (4) working well in operation. Interventions were also classified as involving a “barrier” or as “abandoned” where relevant.

Measures

Data were collected between September 2020 and August 2021. Data collected at baseline included:

Demographics: diagnoses, date ready for care, episode start date, and hospital admissions and readmissions during the study period (yes/no).

Australian Karnofsky Performance Scale (AKPS) Score. ¹⁵

Palliative Care Outcomes Collaboration (PCOC) Phase. ⁵

Resource Utilization Group Activities of Daily Living (RUG-ADL). ¹⁶

PCOC SAS breathing problems subscale^8,9 (Fig. 2). The first and second breathing-related distress scores, including the score taken at episode start date, were collected. Use of the PCOC SAS has been widely implemented in Australian palliative care settings due to its ability to identify the distress related to patients' breathlessness rather than the presence of the symptom.

FIG. 2.

Palliative Care Outcomes Collaboration Symptom Assessment Scale (including ‘Breathing Problems’ subscale).⁸

Timeliness of breathlessness assessment: The date of assessment and number of days between the first and second breathing-related distress assessment were collected.

Analysis

Reassessment data for breathing-related distress were reported as a percentage on a line chart in four-week increments over a six-month period. Weekly periods were defined as midnight Sunday evening to 23:59 the following Sunday night. Data were analyzed and reported using descriptive statistics. An additional analysis included a paired sample t-test to detect mean differences in breathing-related distress scores at the second assessment.

Ethical considerations

This project did not meet criteria for an Institutional Review Board review and was approved as a QI initiative from the relevant Local Health District ETH11249.

Results

Retrospective chart audit

At baseline (September 14, 2020–January 11, 2021), the proportion of new patients admitted to home-based community palliative care with a breathing-related distress score ≥4 reassessed within seven days was 34%.

Cause and effect analysis

Root causes included a lack of understanding as to who should be entering SAS scores for breathing problems on PalCentre software, variable to inconsistent capacity to prioritize scores in the lower to moderate range due to competing crises, the need for training on how to enter SAS scores in to PalCentre, and the need to support clinicians' access to PalCentre (Fig. 1 and Table 3).

Development of key drivers

Four key drivers were identified, including: 1.

Nursing and allied health staff to create a habitual practice of entering symptom assessment scores at each assessment.

Timely allied health referral for breathing-related distress where applicable to eliminate referral lag.

Embodying a preventative mindset that is proactive rather than reactive (for example, by promoting assessment of breathing-related distress before a crisis arises).

Consistency of practice in scoring breathing-related distress for “breathing problems” using the PCOC SAS (Fig. 3).

FIG. 3.

Key drivers and interventions. CPCT, Community Palliative Care Team; OT, occupational therapy; PT, physiotherapy.

Development and implementation of interventions linked to key drivers

First, to address key driver 1, we ensured that all members within the project team and community nursing and allied health staff within the organization had access to the PalCentre software and received internal training on how to enter PalCentre scores onto the software platform in real time (Fig. 3). PalCentre is a purpose-built program for health services participating in the PCOC data collection initiative, which captures information about patients, the interventions they receive, and their outcomes. An external education session by a PCOC representative was prearranged to facilitate PalCentre uptake. Staff were also encouraged to enter scores for “breathing problems” even where the score was 0. Common practice before the project was to only enter scores where PCOC SAS scores for breathing problems were ≥5, which may have limited the identification of some moderately distressed patients.

To address key driver 2, a flowchart created by our doctor (E.G.) was introduced to facilitate the timely assessment and management of breathing-related distress as an additional training tool (Fig. 4) and was delivered in an introductory session with community nursing and allied health staff in April 2021. The use of the Breathing, Thinking, Functioning (BTF) Assessment¹⁷ as the gold standard of breathlessness assessment was reiterated and education on how to conduct a BTF assessment was provided by the community palliative care Nurse Practitioner (C.S.). The BTF Assessment outlines three cognitive and behavioral components of breathlessness that contribute to heightened reactivity and a cyclical worsening of symptoms. As part of the BTF Assessment, it is recommended that nurses address aspects of (1) breathing (respiratory rate, use of accessory muscles, dynamic hyperinflation, inefficient and/or increased work of breathing); (2) thinking (anxiety, distress, thoughts about dying, panic, misconceptions, attention to sensations, memories and past experiences); and (3) functioning (deconditioning of limb, chest wall and accessory muscles, reduced activity, tendency to self-isolate, needing more help from others)¹⁷

FIG. 4.

Flowchart for the assessment and management of moderate-to-severe breathing-related distress. AHP, allied health professional; BTF, breathing, thinking, functioning.

As momentum for the project grew within the team, a second education session was delivered in May 2021 to promote “buy-in” to the project and to facilitate nursing ownership of the SMART goal. At the end of this session, nursing staff agreed they were primary responsibility for ensuring that a follow-up assessment of moderate breathing-related distress was completed within seven days of their initial nursing assessment. This intervention addressed key drivers 3 and 2. The flowchart was refined to include clinician assessment of Resource Utilization Group-Activities of Daily Living, Palliative Care Problem Severity Scale, PCOC Phase, subsequent symptom management and follow-up, and was presented as a training tool for new and current community staff. Staff education was repeated in June 2021.

To address key driver 4, our doctor provided ad hoc advice and troubleshooting regarding inconsistent PCOC Phase and SAS scoring. A new process was commenced within the community palliative care team whereby newly admitted patients with moderate-to-severe breathing-related distress scores (and other symptoms) were reviewed and discussed weekly within the multidisciplinary team meeting to ensure that a timely plan for reassessment and management was in place (Fig. 5). It was also important to ensure that both new and existing staff understood and communicated clearly with their patients about the need to score distress related to breathlessness rather than the severity of the symptom. The distinction is made where a person could be coping or have adjusted to a chronic symptom and is not distressed by the symptom versus the need to provide nonpharmacological support and/or medical treatment for the onset of a new symptom that may be, for example, mild in severity but is distressing for the patient to experience.

FIG. 5.

Process map for the timely assessment of breathing-related distress. MDT, multidisciplinary team.

A line graph template developed by Stanford University was used to present data to community palliative care staff to identify their current breathlessness assessment practices and identify opportunities for improvement. This addressed key driver 3. This line graph was presented at the education session with the community nursing and allied health team in May 2021. The line graph was updated monthly and presented again at the second education session in June 2021 to mark progress.

A routine of fortnightly updates of the proportion of patients with moderate-to-severe breathing-related distress who received a repeated SAS score for “breathing problems” within seven days were collated from PalCentre software into an Excel spreadsheet by the researcher (A.R-N.) and added to the line graph prospectively on a fortnightly basis until the end of the project in August 2021. These updates were disseminated through email to the team doctor before discussion at the next multidisciplinary team meeting.

Evaluation of the timeliness of breathing-related distress

Moderate-to-severe breathing-related distress was experienced by ∼21% (n = 181) of patients who were admitted to the service between September 2020 and August 2021. These patients were predominantly admitted due to a malignancy (81%, n = 151), with a median AKPS score of 50 (range 30–90) and a mean RUG score of 8 (standard deviation [SD] 5) (Table 4). At baseline, the mean number of days to reassessment of breathing-related distress was 8.3 (SD 11.3) days. During the intervention period, the mean number of days to reassessment of breathing-related distress decreased to 6.2 (SD 8.5) days.

Table 4.

Characteristics of Patients with Moderate-to-Severe Breathing-Related Distress (September 2020—August 2021)

Variable		n	%
AKPS on admission	Almost completely bedfast (30)	6	4
	In bed >50% of the time (40)	26	17
	Required considerable assistance and frequent medical care (50)	61	40
	Requires occasional assistance but is able to care for most of his needs (60)	40	27
	Cares for self; unable to carry on normal activity or do active work (70)	17	11
	Normal activity with effort; some signs of symptoms or disease (80)	0	0
	Able to carry on normal activity; minor signs of symptoms (90)	1	1
PCOC Phase on admission	Stable (1)	49	35
	Unstable (2)	35	25
	Deteriorating (3)	57	40
Diagnosis	Malignant	151	81
	Nonmalignant	18	34
	Not reported	1	1
RUG-ADL score		Mean	SD
		8	5

AKPS, Australian Karnofsky Performance Scale; RUG-ADL, Resource Utilisation Group Activities of Daily Living; SD, standard deviation.

At the commencement of the intervention period in April 2021, the proportion of reassessments “breathing problems” that were completed within seven days increased to 50%, which was likely due to some clinical staff obtaining access to PalCentre software, and education about the necessity of the organization to comply with SAS score data entry to facilitate local PCOC benchmarking against national averages. By the end of May 2021, after initial staff education and introduction of the flow diagram, the proportion of patients with a reassessment of their SAS score for “breathing problems” increased to 60%. After the second education session in late June, the proportion of patients with a timely reassessment of breathing problems (i.e., within seven days) increased to 83%. By late July, after the introduction of fortnightly updates of patients who required a reassessment of their breathing-related distress, the proportion of patients with a timely reassessment of their breathing-related distress increased to 86% and then exceeded the project target by late August, reaching 92%. Overall, the mean increase in SAS breathing-related distress was 58% at the conclusion of the project (Fig. 6).

FIG. 6.

Proportion of new community patients with SAS breathing-related distress scores on admission with repeated SAS breathing-related distress scores within seven days. CPCT, community palliative care team.

Changes in breathing-related distress scores

The mean SAS Score for “breathing problems” among those with moderate distress decreased from 5.5 (SD 1.5) at initial assessment to 4.1 (SD 2.18) at second assessment, which reached statistical significance (p < 0.001). The proportion of patients with mild breathing-related distress (SAS ≤3) at the second assessment was ∼27% (n = 34).

Sustainability outcomes

Interventions were predominantly classified as Level 2 Procedures (embedded standard work, reminders), except for an attempt to automate PCOC SAS data collection, which was classified as Level 3 (automated systems) (Fig. 3). This attempt was abandoned, as it was considered outside the scope of the project. One other Level 2 planned procedure to introduce a blue sticker system to identify patients with moderate breathing-related distress was abandoned due to COVID19 lockdowns and the dispersion of the community palliative care team, which prevented the use of a shared physical space. Most interventions implemented reached maturity and worked well in operation.

Discussion

This QI project (1) identified patients experiencing breathing-related distress who required follow-up; (2) identified staff support needs for the scoring of breathing-related distress; and (3) embedded processes for the timely review of patients with moderate-to-severe breathing-related distress.

Different systems of reporting breathlessness between a Respiratory Chronic Care Program, and palliative care physiotherapy and nursing were found. Not all specialties routinely report PCOC breathing-related distress scores on a widely accepted and validated SAS, which is consistent with the literature.^18,19 Nursing assessment usually included a brief summation of patient-reported symptom distress paired with clinical assessment, including listed medications and/or equipment in place to manage these symptoms. Nursing assessment could, but did not consistently include breathlessness education and management.

Limitations in providing optimal nursing care for breathlessness symptom management were largely due to time pressures and staff limitations,²⁰ where some staff perceived that they were only able to provide crisis management, rather than preventive care. Service provision, in particular, assessment capabilities such as chest auscultation was limited by COVID19 restrictions, which limited community home visits.

Nursing referrals to allied health staff often prioritized urgent equipment issues and fall prevention, while referrals specifically for breathlessness education and management were less prevalent. Management of severe breathlessness in people with symptoms or signs of underlying respiratory diseases triggered immediate comprehensive breathlessness-specific referral, education, and management. A physiotherapy referral often triggered comprehensive breathlessness assessment and education as part of their initial assessment, regardless of the reason for referral.

Implications

Innovative approaches to service provision to comprehensively address refractory breathlessness in a timely manner are needed.²¹ This is essential in Australia where services to manage breathing-related distress are not available for palliative care patients with breathlessness who do not meet criteria for pulmonary rehabilitation clinics.¹⁸ Consistent, timely, breathlessness-specific allied health referral of patients with moderate-to-severe breathlessness symptoms will likely improve the consistency of breathlessness assessment and management practices in the palliative care setting.

Improved nursing assessment of breathlessness symptoms and management practices, which includes a BTF assessment, may also improve patients' ability to manage their symptoms, and reduce distress.¹⁷ Future research is required to understand if a comprehensive multidisciplinary breathlessness assessment and management program in the palliative care setting can improve the severity of symptoms in the context of functional decline and expected disease progression.

A palliative care breathlessness clinic also has the potential to shift nurse-led multidisciplinary patient care for breathlessness from a crisis management to a preventive mindset, which may reduce the frequency of specialist palliative care admissions and associated costs.²² For example, in the United Kingdom, a complex multidisciplinary breathlessness intervention service with a maximum wait time of one week, which included medical review and pharmacological management, and selective use and application of a range of nonpharmacological strategies (e.g., hand-held fan, breathing control, activity pacing, relaxation, mindfulness and visualization, brief cognitive therapy, positioning, airway clearance techniques, and an individualized exercise plan), generated significant reductions in distress due to breathlessness.²² Implementation of another breathlessness clinic that included activity repacing, breathing retraining, simple relaxation techniques, and psychosocial support over three weeks found significant reductions in functional capacity (walking distance without dyspnea and ability to climb hills or stairs) and breathing-related distress.²³

Reconfiguration of a day service to a closed self-management clinic to create capacity and enhance the experience of patients with fatigue, breathlessness, and anxiety also resulted in a 176% increase in annual contact hours, a 125% increase in contact time per patient, upskilling of staff to address breathlessness within multiple chronic conditions, and increased multidisciplinary support.²⁴

Limitations

This QI project was conducted at a single site, which reduces the generalizability of the findings to other community palliative care settings and contexts. The baseline reassessment rate reported may vary given the delayed uptake of PCOC electronic data capture at the site.

Conclusion

Implementation of a local QI project over a five-month period increased the proportion of community palliative care patients who were reassessed for breathing-related distress by a member of the multidisciplinary team within seven days.

Funding Information

No funding was received to complete this project.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

References

Connor

, Morris

, Jaramillo

, et al. Global Atlas of Palliative Care. World Health Organization, Worldwide Hospice Palliative Care Alliance: London, UK; 2020.

Weingaertner

, Scheve

, Gerdes

, et al. Breathlessness, functional status, distress, and palliative care needs over time in patients with advanced chronic obstructive pulmonary disease or lung cancer: A cohort study. J Pain Symptom Manage, 2014; 48(4):569–581.e1.

Wiseman

, Rowett

, Allcroft

, et al. Chronic refractory dyspnoea. Aust J Gen Pract, 2013; 42(1/2):137–140.

Maddocks

, Lovell

, Booth

, et al. Palliative care and management of troublesome symptoms for people with chronic obstructive pulmonary disease. Lancet, 2017; 390(10098):988–1002.

Eagar

, Watters

, Currow

, et al. The Australian Palliative Care Outcomes Collaboration (PCOC)—Measuring the quality and outcomes of palliative care on a routine basis. Aust Health Rev, 2010; 34(2):186–192.

Masso

, Allingham

, Banfield

, et al. Palliative Care Phase: Inter-rater reliability and acceptability in a national study. Palliat Med, 2014; 29(1):22–30.

Palliative Care Outcomes Collaboration. Patients Ending a Phase in Moderate Distress from Breathing Problems Calvary Health Care Kogarah. Palliative Care Outcomes Collaboration: Australia; 2020.

Daveson

, Allingham

, Clapham

, et al. The PCOC Symptom Assessment Scale (SAS): A valid measure for daily use at point of care and in palliative care programs. PLoS One, 2021; 16(3):1.

Clapham

, Holloway

, on behalf of the Palliative care Outcomes Collaboration (2014) Australian Health Services Research Institute (ASHRI). Palliative Care Outcomes Collaboration Clinical Manual. Palliative Care Outcomes Collaboration, University of Wollongong: NSW, Australia; 2021.

10.

Ogrinc

, Davies

, Goodman

, et al. SQUIRE 2.0 (Standards for QUality Improvement Reporting Excellence): Revised publication guidelines from a detailed consensus process. BMJ Qual Saf, 2016; 25(12):986.

11.

Australian Bureau of Statistics. Australian Bureau of Statistics Census of Population and Housing 2016. Australian Bureau of Statistics: Canberra, Australia; 2017.

12.

NSW Government. South West Sydney: Our health in brief. NSW Government: Sydney, Australia; 2019.

13.

NSW Government. Culturally and Linguistically Diverse Health Strategic Plan 2022–2026. NSW Government: Sydney, Australia; 2021.

14.

Taylor

, McNicholas

, Nicolay

, et al. Systematic review of the application of the plan–do–study–act method to improve quality in healthcare. BMJ Qual Saf, 2014; 23(4):290.

15.

Abernethy

, Shelby-James

, Fazekas

, et al. The Australia-modified Karnofsky Performance Status (AKPS) scale: A revised scale for contemporary palliative care clinical practice. BMC Palliat Care, 2005; 4(1):7.

16.

Fries

, Schneider

, Foley

, et al. Refining a case-mix measure for nursing homes: Resource Utilization Groups (RUG-III). Med Care, 1994; 32(7):668–685.

17.

Spathis

, Booth

, Moffat

, et al. The Breathing, Thinking, Functioning clinical model: a proposal to facilitate evidence-based breathlessness management in chronic respiratory disease. NPJ Prim Care Respir Med, 2017; 27(1):27.

18.

Elliott-Button

, Johnson

, Nwulu

, et al. Identification and assessment of breathlessness in clinical practice: A systematic review and narrative synthesis. J Pain Symptom Manage, 2020; 59(3):724–733.e19.

19.

Currow

, Johnson

. Chronic breathlessness: Silent and deadly. Currt Opin Support Palliat Care, 2016; 10 3:221–222.

20.

Booth

, Johnson

. Improving the quality of life of people with advanced respiratory disease and severe breathlessness. Breathe, 2019; 15(3):198.

21.

NSW Government. End of Life and Palliative Care Framework 2019–2024. In: (Health NMo. ed.). NSW Ministry of Health: North Sydney, NSW; 2019.

22.

Farquhar

, Prevost

, McCrone

, et al. Is a specialist breathlessness service more effective and cost-effective for patients with advanced cancer and their carers than standard care? Findings of a mixed-method randomised controlled trial. BMC Med, 2014; 12(1):194.

23.

Hately

, Laurence

, Scott

, et al. Breathlessness clinics within specialist palliative care settings can improve the quality of life and functional capacity of patients with lung cancer. Palliat Med, 2003; 17(5):410–417.

24.

Haworth

, Bass

. P-190 Transforming palliative day services to improve access and quality for patients, carers and staff. BMJ Support Palliat Care, 2018; 8(Suppl 2):A78.