Improving Quality of Palliative Care Through Implementation of National Guidelines for Palliative Care

Abstract

Background:

Palliative care guidelines and quality measures have been developed in many countries to improve the quality of care. The challenge is to implement quality measures nationally to improve quality of care across all settings.

Objective:

This article describes the development and implementation of National Guidelines for Palliative Care (NGPC) in Singapore.

Design:

The NGPC was developed through literature review, multidisciplinary inputs, and modified RAND Delphi method. Quality measures for the guidelines were developed through literature review and multidisciplinary inputs and implemented with an audit of specialist palliative care providers.

Results:

The NGPC consisted of 13 guidelines and 64 quality measures. A total of 11 palliative care services (73.3%) participated in the audit from September 2015 to October 2015. National-level and service-level gaps in quality of care were identified and individual providers identified priority areas for improvement.

Conclusion:

We successfully developed the national palliative care guidelines and quality measures. We implemented voluntary self-assessment among health care institutions in various settings nationally that serve to catalyze quality improvement and cultivate a culture of quality improvement.

Introduction

Many studies have demonstrated gaps in the quality of palliative care.^1,2 In an effort to improve the quality of palliative care, quality measures have been developed in many countries,^3–11 although few have implemented them nationally across settings.

In Singapore, patients with life-limiting illnesses receive palliative care in various settings, such as acute hospitals, community hospitals, inpatient hospices, and at home. As patients transit from one setting to another in the course of their illness, standards of care should be consistent across all settings to ensure the best outcomes. In 2011, the National Strategy for Palliative Care had, among other recommendations, articulated a vision for local standards of care in Singapore to ensure good-quality palliative care.¹² To this end, the Singapore Hospice Council (SHC), with support from the Ministry of Health, initiated the National Guidelines for Palliative Care (NGPC) project. We describe our national initiative to systematically develop and implement a set of national palliative care guidelines and quality measures that are clinically relevant and applicable across settings. The quality measures would serve as the basis for benchmarking, identifying gaps and priority areas for improvement, and instituting measures to improve the quality of care.

Methods

The NGPC were developed in 2014 by a workgroup consisting of nine multidisciplinary palliative care professionals. The national guidelines workgroup, with the support of a team of researchers, conducted a literature review of existing national palliative guidelines and standards from countries around the world. The guidelines were customized for the local context and refined with inputs from interviews with four patients and focus group discussions with 14 caregivers and 7 hospice volunteers. The proposed quality measures were further refined with inputs from a local panel of 16 experts on feasibility and appropriateness for local use via a modified RAND Delphi process.¹³ (see Table 1 for the profile of members of the workgroup and expert panel.) The panel assessed the guidelines based on the strength of scientific evidence, ability to differentiate good-quality care from poor-quality care, amenability to improvement by participating facility, and ease of measurement, as determined by the availability and accessibility of required data.

Table 1.

Profile of the Members of the Standards Development Subgroup, Expert Panel, and Guidelines Implementation Workgroup

	Standards Development Subgroup (n = 9)	Expert panel (n = 16)	Guidelines Implementation Workgroup (n = 14)
Health care professional
Medical social worker	1	3	3
Nurse	2	3	4
Pharmacist	0	1	0
Physician	6	9	7
Health care setting
Acute/community hospital	6	12	8
Home care	1	1	3
Inpatient hospice	1	1	3
Nursing home	0	1	0
Primary care	1	1	0
Years of practice
5–10	0	0	3
11–15	1	0	2
16–20	3	4	6
21–25	1	5	1
>25	4	7	2

In the second phase, the Guidelines Implementation Workgroup, consisting of 14 multidisciplinary palliative care professionals, translated the guidelines into quality measures via literature review and multidisciplinary inputs from palliative care professionals. The Guidelines Implementation Workgroup formulated an Interpretation Guide and Self-assessment Workbook for palliative care providers to conduct an audit of 20 cases under their care using the quality measures.^14,15 For example, for the quality measure “percentage of patients screened for pain during the initial assessment,” providers would rate themselves as always (100%), almost always (75%–100%), often (50%–75%), sometimes (25%–50%), rarely (<25%), or never (0%). Upon completion of data extraction from case notes, the workgroup met the multidisciplinary team from each participating organization to discuss the findings and identify potential gaps in services and priority areas for improvement. Aggregated results were provided to the participating institutions to allow them to have a sense of where they stand vis-a-vis other providers. The phases of development and implementation of the national palliative guidelines and quality measures are summarized in Figure 1.

FIG. 1.

Overview of the development and implementation of palliative care guidelines.

Results

The NGPC consists of 13 guidelines and 64 quality measures (see Table 2 for the list of guidelines and examples of quality measures for each guideline).^14–16 Out of the 15 palliative care services, 11 (73.3%) participated in the baseline self-assessment from September 2015 to October 2015. The participating institutions included five tertiary hospitals or specialty centers (Changi General Hospital, Kandang Kerbau Women's and Children's Hospital, National Cancer Centre Singapore, National University Hospital, and Tan Tock Seng Hospital), three in-patient hospices (Assisi Hospice, Dover Park Hospice, and St Joseph's Home), and three home care services (Agape Methodist Hospice, HCA Hospice Care, and Singapore Cancer Society).

Table 2.

National Guidelines for Palliative Care and Examples of Quality Measures

Guideline 1: Timely identification: People approaching the end of life are identified in a timely manner.

Guideline 2: Reducing barriers to care: Palliative care is available for all people based on clinical need, regardless of diagnosis, age, gender, financial means, ethnic and cultural background, and care setting.

2.1. The service provider triages and assigns priorities to all initial consult requests and ensures that care is delivered in a timely manner.

2.2. The patient and family have access to palliative care services 24 hours a day, seven days a week.

2.3. The service provider has protocols for responding to palliative care emergencies or urgent needs.

2.4. The service provider has formal links with specialists or providers in other fields to ensure access to expert advice and management of patients with specific needs in these areas.

Example of quality measure: Evidence of on-call system in place for palliative care.

Guideline 3: Coordinated care: Care is delivered in a coordinated manner that ensures continuity of care across settings and over time.

3.1. The patient, caregivers, and family are provided with clear written instructions on how to seek help if needed at any time, including after office hours.

3.2. During transfers between different care settings, necessary patient information is provided to the receiving service provider.

3.3. A plan is in place for certification of death during and after office hours.

Example of quality measure: Percentage of expected or planned transfers with written or verbal hand-overs.

Guideline 4: Holistic assessment and ongoing care planning: Holistic assessment and ongoing care planning are implemented in an interdisciplinary manner to meet the changing needs and wishes of patients, caregivers, and families.

4.1. All patients identified as approaching the end of life undergo documented holistic assessments that cover the patient and family's physical, psychological, social, spiritual, and cultural needs and preferences.

4.2. There is evidence of individualized care plans made after the holistic assessment of the needs of patients, caregivers, and families.

4.3. Assessment and care planning reflect an interdisciplinary approach.

4.4. There is evidence of ongoing assessment and care planning at appropriate intervals that document change in the patient and family's needs and response to treatment over time.

4.5. Regular assessment of physical symptoms and psychological and spiritual needs is conducted with the use of assessment tools where appropriate.

4.6. There are mechanisms in place to identify and assess risk of self-harm.

Example of quality measure: Percentage of patients screened for pain during first clinical assessment.

Guideline 5: Advance care planning (ACP): All patients at the end of life have access to ACP.

5.1. The service provider routinely conducts ACP to ascertain and document patients' and families' preferences about treatment at the end of life and fulfils these preferences as far as possible.

5.2. There are systems in place to monitor if patients' ACP are honored.

Example of quality measure: Percentage of patients with ACP discussion documented in case notes.

Guideline 6: Patient-centered care: Patients receive care that is customized to their unique needs and preferences as informed by holistic assessments.

6.1. Spiritual support and therapy services (e.g., occupational, physical, and speech therapy) are made available to patients when needed. Where these competencies do not exist within the service provider, there should be defined links to access these services.

6.2. In the presence of complex ethical dilemmas beyond the resourced ability of service provider, there are policies and procedures to ensure access to ethics committees.

Example of quality measure: Evidence of access to spiritual support, physical, occupational, and speech therapy services.

Guideline 7: Care in the last days of life: Care is taken to fulfil the needs of patients in the last days of life, as well as those of their caregivers and families.

7.1. There is recognition and documentation of the patient's transition to the active dying phase, and communication to the patient, family, and staff on the patient's imminent death.

7.2. The family is educated on a timely basis on the signs and symptoms of imminent death in an age-appropriate, developmentally appropriate, and culturally appropriate manner.

7.3. Symptoms at the end of life are assessed and controlled, with referral to palliative care services if necessary.

7.4. There is evidence of a plan in place to maximize patient comfort during the active dying phase and to support the family and caregivers.

Example of quality measure: Percentage of patients whose common symptoms (pain, dyspnea, respiratory secretions, terminal delirium, nausea, or vomiting) were assessed in the active dying phase.

Guideline 8: Caregiver support: Caregivers of patients with life-limiting illness face significant stress in their roles, and their own practical and emotional needs need to be supported.

8.1. The patient's primary caregiver is identified at the initial assessment, and his or her needs are assessed and addressed on an ongoing basis.

8.2. The primary caregiver is provided with education and training on their role, including strategies for self-care and coping with the demands of caregiving.

Example of quality measure: Percentage of survey respondents who report that the primary caregiver's needs were assessed and addressed in a timely manner.

Guideline 9: Bereavement care: Family members affected by a death are offered timely bereavement support appropriate to their needs and preferences.

9.1. Appropriate information about practical death-related issues (e.g., funeral arrangements) should be available when requested.

9.2. Families and caregivers identified to be at risk of complicated grief are referred to bereavement support services.

Example of quality measure: Evidence of a system in place to provide support for family members and caregivers identified as having difficulty with bereavement.

Guideline 10: Qualified staff and volunteers: Care for those approaching the end of life is delivered by staff and volunteers with appropriate qualifications and skill mix for the level of service offered, and who demonstrate ongoing participation in training and development.

10.1. All staff and volunteers demonstrate evidence of palliative care training appropriate to the level of care provided.

10.2. Palliative care teams consist of an interdisciplinary team of skilled palliative care professionals, including physicians, nurses, social workers, and/or counsellors/pastoral staff.

10.3. Staffing levels are adequate to deliver the care needed by patients.

10.4. Palliative care professionals are appropriately trained, credentialed, and/or certified in their area of expertise. Evidence of policies is in place to recruit staff with recognized qualifications and provide training in area of work.

10.5. Where volunteers are part of the team, there is evidence of policies in place to ensure proper screening, recruitment, and ongoing training of volunteers.

Example of quality measure: Percentage of staff who have palliative care training appropriate to the clinical role.

Guideline 11: Staff and volunteer self-care: Staff and volunteers reflect on practice, maintain effective self-care strategies, and have access to support in dealing with the psychological stress associated with working among the terminally ill and bereaved.

11.1. There are strategies in place to provide situational support, critical incident debriefing, and response.

11.2. Education is provided to help staff and volunteers develop effective coping strategies. Evidence of initiatives is in place to help staff and volunteers develop effective coping strategies.

11.3. Staff have access to confidential employee assistance programs or counseling services.

Example of quality measure: Evidence of organizational policy or procedure to ensure situational support for providers and respond to critical events.

Guideline 12: Access to and use of opioids: Patients at the end of life should have access to opioids for symptom control, with guidelines and processes in place to ensure safe and effective use.

12.1. Service providers caring for patients at the end of life have access to opioids.

12.2. The use of opioids in the management of symptoms should be directed by evidence, driven by need, and administered under guidelines with appropriate monitoring.

12.3. There is evidence of patient and caregiver education on the safe use of opioids.

12.4. There is adherence to the legal requirements of the Misuse of Drugs Act on the prescription, safe storage, dispensing, administration, disposal, and report of errors in the use of opioids.

Example of quality measure: Evidence of a system in place to monitor signs and symptoms of opioid toxicity in patients on opioid infusion on a regular and ongoing basis.

Guideline 13: Clinical quality improvement: The service is committed to improvement in clinical and management practices.

13.1. Presence of a framework to guide a program for quality improvement.

13.2. There is evidence of the implementation of quality improvement projects to support ongoing service evaluation and development.

13.3. There is evidence of ongoing evaluation of patients' and families' satisfaction with care and necessary measures to improve these.

Example of quality measure: Evidence of quality improvement or assurance committee to review the quality of care.

The areas that most providers performed well in the audit included holistic assessment and care planning. For example, 100% of providers screened patients for pain during the first encounter in 75%–100% of cases. One hundred percent of providers had individualized documented care plan at first encounter in 75%–100% of cases. All providers had a system in place to refer caregivers identified as having difficulty with bereavement for support. From a national perspective, the consolidated results allowed SHC to identify areas for further improvement, which included developing care protocols for palliative care emergencies, enhancing symptom control at the end of life, and strengthening quality improvement. For example, consolidated results from the self-assessment in 2015 showed that 1 out of 11 providers (9%) had evidence of a response protocol for palliative care emergencies. Eight out of 11 providers (72%) had pain and dyspnea controlled for >75% of patients at the end of life. Seven out of 11 providers (63%) had death reviews of deceased patients completed within one month. Six out of 11 providers (54%) had evidence of at least one quality improvement project each year. Recognizing the gaps in quality of care, the institutions proceeded to prioritize and make plans on the areas to focus on for quality improvement.

Discussion

The development of the NGPC and Interpretation Guide and Self-Assessment Workbook was a significant milestone in the journey of quality improvement for palliative care providers in Singapore for various reasons. Firstly, a consensus was forged with multidisciplinary inputs on a comprehensive set of guidelines and quality measures that are to be implemented in various health care settings nationally.

Secondly, our initiative demonstrated that voluntary self-assessment was feasible and fostered ownership, self-reflection, and organizational learning. The voluntary data collection shifted the focus from compliance to mandatory or reimbursement requirements to embracing quality improvement proactively. We found that extensive clinical education, active recruitment of participating sites, strong support from management, and a national policy framework were crucial for voluntary collection of data on quality measures, similar to the experience of the Palliative Care Outcomes Collaboration in Australia.¹⁷

Thirdly, there is increasing recognition that incorporating electronic data collection into routine clinical practice will enable providers to generate data on quality measures efficiently. The real-time data on quality measures shortened the feedback loop to effect changes towards improving the quality of care.

Fourthly, the use of quality measures applicable across various settings allowed for benchmarking between the providers so that they could have a sense of where they stand vis-a-vis other providers. An aspirational goal would be to achieve international benchmarking.

Fifthly, the implementation of the national guidelines spurred follow-up actions to improve quality of care. The SHC has embarked on quality improvement training programmes to equip health care professionals with quality improvement knowledge and skills to implement projects to close the gaps. The SHC has been facilitating collaborations between larger institutions and smaller community service providers to initiate quality improvement projects targeted at key areas for improvement. The SHC creates forums where outcomes and learning points of quality improvement projects can be shared to allow all organizations to learn from each other and disseminate best practices. In the pipeline are two yearly self-assessment audits to allow institutions to prioritize areas for further improvement and assess whether the measures implemented have been effective in bridging the gaps. There are also plans to implement minimum dataset collection, caregiver survey, and patient safety culture surveys.

Conclusion

The development and successful implementation of the NGPC in Singapore demonstrated that voluntary audits using a consensus-based guidelines and quality measures are embraced by providers in various health care settings. The national guidelines catalyzed and served to cultivate a culture of quality improvement for the benefit of patients and their caregivers.

Footnotes

Acknowledgments

Members of the Standards Development Subgroup of the National Strategy for Palliative Care Implementation Taskforce: Angel Lee (Chairman), Patricia Neo (Vice-Chairman), R. Akhileswaran, Chen Wei Ting, Ng Tzer Wee, Ong Yew Jin, Edward Poon, Angeline Seah, Siew Chee Weng. Members of Guidelines Implementation Workgroup: Patricia Neo (Chairman), Mervyn Koh Yong Hwang (Service Subgroup Lead), Goh Sock Cheng, Lo Tong Jen, Benjamin Tan Swee An, Wong Yoke Ping, Ong Wah Ying (Education Subgroup Lead), Kahvidah Mayganathan, Ong Yew Jin, Peh Tan Ying, Tan Yee Pin (Medical Social Worker/Bereavement Subgroup Lead), Chee Wai Yee, Terina Tan Pei Yin, Tan Yung Ying. This NGPC audit was funded by the Ministry of Health, Singapore. The workgroup would like to acknowledge Palliative Care Australia for sharing their experience with us on developing the Australian National Standards Assessment Program. We would also like to acknowledge the staff of hospice organizations in Singapore for their contributions towards the conduct of the audits.

Author Disclosure Statement

No competing financial interests exist.

The Singhealth Institutional Review Board approved this study.

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