Value of advance care planning and quality palliative care for patients nearing end-of-life

Background: Despite substantial efforts to integrate palliative care and improve advance care planning, both are underutilized. Quality improvement initiatives focused on reducing mortality may offer an opportunity for facilitating engagement with palliative care and advance care planning. Objective: In the context of an initiative to reduce acute myocardial infarction (AMI) mortality, we examined challenges and opportunities for engaging palliative care and improving advance care planning. Methods: We performed a secondary analysis of qualitative data collected through the Leadership Saves Lives initiative between 2014 and 2016. Data included in-depth interviews with hospital executives, clinicians, administrators, and quality improvement staff (n = 28) from 5 hospitals participating in the Mayo Clinic Care Network. Focused analysis examined emergent themes related to end-of-life experiences, including palliative care and advance care planning. Results: Participants described challenges related to palliative care and advance care planning in the AMI context, including intervention decisions during an acute event, delivering care aligned with patient and family preferences, and the culture around palliative care and hospice. Participants proposed strategies for addressing such challenges in the context of improving AMI quality outcomes. Conclusions: Clinicians who participated in an initiative to reduce AMI mortality highlighted the challenges associated with decision-making regarding interventions, systems for documenting patient goals of care, and broader engagement with palliative care. Quality improvement initiatives focused on mortality may offer a meaningful and feasible opportunity for engaging palliative care. Primary palliative care training is needed to improve discussions about patient and family goals of care near the end of life.

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IMPROVING END-OF-LIFE CARE AND ADVANCE CARE PLANNING FOR FRAIL OLDER ADULTS IN CANADA

Journal of Frailty & Aging ◽

10.14283/jfa.2018.33 ◽

2018 ◽

pp. 1-7

Author(s):

J. Downar ◽

P. Moorhouse ◽

R. Goldman ◽

D. Grossman ◽

S. Sinha ◽

...

Keyword(s):

Older Adults ◽

Palliative Care ◽

End Of Life ◽

Advance Care Planning ◽

End Of Life Care ◽

Care Planning ◽

Life Care ◽

Frail Older Adults ◽

Key Concepts ◽

Advance Care

We present five Key Concepts that describe priorities for improving end-of-life care for frail older adults in Canada, and recommendations based on each Key Concept. Key Concept #1: Our end-of-life care system is focused on cancer, not frailty. Key Concept #2: We need better strategies to systematically identify frail older adults who would benefit from a palliative approach. Key Concept #3: The majority of palliative and end-of-life care will be, and should be, provided by clinicians who are not palliative care specialists. Key Concept #4: Organizational change and innovative funding models could deliver far better end-of-life care to frail individuals for less than we are currently spending. Key Concept #5: Improving the quality and quantity of advance care planning for frail older adults could reduce unwanted intensive care and costs at the end of life, and improve the experience for individuals and family members alike.

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Integrative Palliative Care

10.1093/med/9780190466268.003.0031 ◽

2018 ◽

Author(s):

Angela Lee ◽

Stephanie Cheng ◽

Dale Lupu

Keyword(s):

Primary Care ◽

Palliative Care ◽

End Of Life ◽

Integrative Medicine ◽

Advance Care Planning ◽

Palliative Medicine ◽

Geriatric Patients ◽

Care Planning ◽

Patient Goals ◽

Advance Care

Integrative medicine and palliative medicine share many tenets. This chapter reviews integrative approaches to the most common symptoms needing palliation among geriatric patients at the end of life, including pain, nausea and vomiting, constipation, dyspnea, and fatigue. Several palliative care approaches to communication about patient goals and advance care planning for a time when the patient is unable to make decisions are described. Resources to support advance care planning are provided. Finally, issues that need to be addressed by either primary care geriatrics or in consultation with palliative care in the last weeks, days, and hours of life are described.

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Outpatient palliative care at a tertiary cancer center: Perceptions, pathways, and pitfalls.

Journal of Clinical Oncology ◽

10.1200/jco.2012.30.34_suppl.28 ◽

2012 ◽

Vol 30 (34_suppl) ◽

pp. 28-28

Author(s):

Kavitha Ramchandran ◽

Sandy Trieu ◽

Stephanie Harman ◽

Judy Passaglia ◽

Janet Rodriguez ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

Advance Care Planning ◽

End Of Life Care ◽

Cancer Center ◽

Care Planning ◽

Life Care ◽

Code Status ◽

Wide Range ◽

Advance Care

28 Background: To describe an outpatient palliative care program at a quaternary cancer center- Stanford Cancer Institute. Outpatient palliative care (PC) programs are still in their nascency. Best practices are still being developed and key performance metrics are being delineated. This is a description of Stanford Cancer Institute outpatient PC program. Methods: Observational study of the first six months of encounters to the outpatient PC program. Description of potential barriers to launch and growth, as well as description of resources required for continued success. Data evaluated included program volume, referral patterns, advance care planning, symptom assessment and team structure as collected by the clinical team. Results: Initial barriers to program initiation included lack of funding and infrastructure. Additional barriers included coordination between teams, flow of care (patients late for next appointments), and cultural perceptions of palliative care as equal to end of life care. There are 32 referring practitioners to the program. Over the first six months the outpatient PC program has seen growth with volume increasing from 10 consults per month to 26 consults per month for a total of 60 patients. At the time of initial consult, 11 of the 60 patients seen had an advance directive. Only 1 patient had a physician order for life sustaining treatment (POLST). Code status was documented in 21 of the 60 patients. Conclusions: Our program had multiple barriers to launch: perceptions that palliative care equaled end of life care, lack of infrastructure and funding, and difficulty with coordination between teams. With administrative support the program secured funding, developed infrastructure with the assistance of IT, Cancer Center administration, and Care Coordination. Consults now come from a wide range of providers. Based on preliminary data indicating a very low percentage of completion of these tasks by patients on initial consult there is need for outpatient palliative care for advance care planning. Future growth will include continued penetration of the cancer center, increasing volume of consults, and additional assessments of patient satisfaction, symptom improvement, and hospital utilization.

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Palliative Care, End-of-Life Care, and Advance Care Planning in Neuro-oncology

CONTINUUM Lifelong Learning in Neurology ◽

10.1212/con.0000000000000538 ◽

2017 ◽

Vol 23 (6) ◽

pp. 1709-1726 ◽

Cited By ~ 2

Author(s):

Tobias Walbert

Keyword(s):

Palliative Care ◽

End Of Life ◽

Advance Care Planning ◽

End Of Life Care ◽

Care Planning ◽

Life Care ◽

Advance Care

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COVID-19 Pandemic Response: Development of Outpatient Palliative Care Toolkit Based on Narrative Communication

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909120944868 ◽

2020 ◽

Vol 37 (11) ◽

pp. 985-987

Author(s):

Benjamin Roberts ◽

Scott M. Wright ◽

Colleen Christmas ◽

Mariah Robertson ◽

David Shih Wu

Keyword(s):

Primary Care ◽

Palliative Care ◽

Curriculum Development ◽

End Of Life ◽

Advance Care Planning ◽

Symptom Management ◽

Care Planning ◽

Palliative Care Education ◽

Advance Care ◽

Primary Care Clinicians

Context: The coronavirus disease 2019 (COVID-19) pandemic laid bare the immediate need for primary palliative care education for many clinicians. Primary care clinicians in our health system reported an urgent need for support in advance care planning and end-of-life symptom management for their vulnerable patients. This article describes the design and dissemination of palliative care education for primary care clinicians using an established curriculum development method. Objectives: To develop a succinct and practical palliative care toolkit for use by primary care clinicians during the COVID-19 pandemic, focused on 2 key elements: (i) advance care planning communication skills based on the narrative 3-Act Model and (ii) comfort care symptom management at the end of life. Results: The toolkit was finalized through an iterative process involving a team of end-users and experts in palliative care and primary care, including social work, pharmacy, nursing, and medicine. The modules were formatted into an easily navigable, smartphone-friendly document to be used at point of care. The toolkit was disseminated to our institution’s primary care network with practices spanning our state. Early feedback has been positive. Conclusion: While we had been focused primarily on the inpatient setting, our palliative care team at Johns Hopkins Bayview Medical Center pivoted existing infrastructure and curriculum development expertise to meet the expressed needs of our primary care colleagues during the COVID-19 pandemic. Through collaboration with an interprofessional team including end-users, we designed and disseminated a concise palliative care toolkit within 6 weeks.

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Palliative Care With Dementia and Family Caregiver Involvement (A Collaborative Symposium between the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups)

Innovation in Aging ◽

10.1093/geroni/igaa057.2845 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 786-786

Author(s):

Jenny van der Steen ◽

Christopher Johnson ◽

Sheryl Zimmerman

Keyword(s):

Palliative Care ◽

Interest Groups ◽

End Of Life ◽

Family Caregivers ◽

Advance Care Planning ◽

End Of Life Care ◽

Healthcare Professionals ◽

Care Planning ◽

Life Care ◽

Advance Care

Abstract This collaborative symposium offered by the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups addresses palliative care including advance care planning considerations for family caregivers and persons with dementia. Family caregivers may need information about palliative and end-of-life care that is specific to the person, the situation or the stage of dementia. This symposium shows information needs also differ by country and setting. Conversations about symptoms, and about current and end-of-life treatment preferences need support from healthcare professionals. The symposium shows results of a study on video recordings with end-of-life preferences and how, as a stand-alone, they may not inform palliative care practice, and integration of information sources for advance care planning is needed. We will also show that a question prompt list with examples of questions to encourage family caregivers to ask healthcare professionals can and should have different contents for different countries as the content reflects socio-cultural differences. In more studies, participants clearly neede information on the disease trajectory and available services. Such needs go beyond need for information on pain and other symptoms, as family caregivers often appreciate opportunities for social activities for persons with dementia. A decision aid study shows that persons with dementia and family caregivers can participate in advance care planning conversations when supported by the right tools. We argue that local client participation is important when developing tools. Overall, the symposium highlights the need for tailored tools to support face-to-face conversations with all stakeholders to encourage person-centred caregiving.

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Impact of advance care planning on dying in hospital: Evidence from urgent care records

PLoS ONE ◽

10.1371/journal.pone.0242914 ◽

2020 ◽

Vol 15 (12) ◽

pp. e0242914

Author(s):

Martina Orlovic ◽

Tom Callender ◽

Julia Riley ◽

Ara Darzi ◽

Joanne Droney

Keyword(s):

Palliative Care ◽

End Of Life ◽

Advance Care Planning ◽

End Of Life Care ◽

Urgent Care ◽

Place Of Death ◽

Hospital Death ◽

Care Planning ◽

Care Providers ◽

Advance Care

Place of death is an important outcome of end-of-life care. Many people do not have the opportunity to express their wishes and die in their preferred place of death. Advance care planning (ACP) involves discussion, decisions and documentation about how an individual contemplates their future death. Recording end-of-life preferences gives patients a sense of control over their future. Coordinate My Care (CMC) is London’s largest electronic palliative care register designed to provide effective ACP, with information being shared with urgent care providers. The aim of this study is to explore determinants of dying in hospital. Understanding advance plans and their outcomes can help in understanding the potential effects that implementation of electronic palliative care registers can have on the end-of-life care provided. Retrospective observational cohort analysis included 21,231 individuals aged 18 or older with a Coordinate My Care plan who had died between March 2011 and July 2019 with recorded place of death. Logistic regression was used to explore demographic and end-of-life preference factors associated with hospital deaths. 22% of individuals died in hospital and 73% have achieved preferred place of death. Demographic characteristics and end-of-life preferences have impact on dying in hospital, with the latter having the strongest influence. The likelihood of in-hospital death is substantially higher in patients without documented preferred place of death (OR = 1.43, 95% CI 1.26–1.62, p<0.001), in those who prefer to die in hospital (OR = 2.30, 95% CI 1.60–3.30, p<0.001) and who prefer to be cared in hospital (OR = 2.77, 95% CI 1.94–3.96, p<0.001). “Not for resuscitation” individuals (OR = 0.43, 95% CI 0.37–0.50, p<0.001) and who preferred symptomatic treatment (OR = 0.36, 95% CI 0.33–0.40, p<0.001) had a lower likelihood of in-hospital death. Effective advance care planning is necessary for improved end-of-life outcomes and should be included in routine clinical care. Electronic palliative care registers could empower patients by embedding patients’ wishes and personal circumstances in their care plans that are accessible by urgent care providers.

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Connecting Personal Experiences of Loss and Professional Practices in Advance Care Planning and End-of-Life Care: A Survey of Providers

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909118783736 ◽

2018 ◽

Vol 35 (11) ◽

pp. 1369-1376

Author(s):

Cara L. Wallace ◽

Dulce M. Cruz-Oliver ◽

Jennifer E. Ohs ◽

Leslie Hinyard

Keyword(s):

Health Care ◽

Palliative Care ◽

End Of Life ◽

Advance Care Planning ◽

Professional Practices ◽

Care Planning ◽

Personal Experiences ◽

Advance Care ◽

Hospice And Palliative Care ◽

Eol Care

Background: Although practitioners overwhelmingly agree on the importance of advance care planning (ACP) and preparing for the end of life (EOL), the process is fraught with barriers. Objective: The goal of this research was to explore potential connections between providers’ own personal experiences and current professional practices in ACP and EOL care. Design: A cross-sectional survey design, gathering voluntary, anonymous responses from participants between August and December 2016. The survey sought information from providers in 3 distinct areas: (1) personal experiences of loss, (2) personal ACP, and (3) professional practices related to ACP and EOL care. Setting/Participants: One hundred and ninety health-care professionals (primarily physicians, nurses, and social workers) participated in the survey across a greater, Metropolitan area in the Midwest. Measurements: Questions for professional practices were subscales from the End-of-Life Professional Caregiver Survey: Patient- and Family-Centered Communication (PFCC) and Effective Care Delivery (ECD). Questions developed by the research team were evaluated by judges chosen for clinical and/or research expertise. Results: Numerous connections were found between professionals’ histories of loss, personal ACP, and professional practices. For example, both clinicians with personal experience caring for someone who is dying and clinicians who had completed their own ACP scored higher in both PFCC and ECD and were more likely to refer patients to hospice and palliative care. Conclusions: Results support educational interventions involving opportunities for reflection and completion and communication about ACP. Additionally, educational opportunities for students in health care should focus on incorporating both ACP and greater exposure to hospice and palliative care.

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Different Associations Between Inpatient or Outpatient Palliative Care and End-of-Life Outcomes for Hospitalized Patients With Cancer

JCO Oncology Practice ◽

10.1200/op.21.00546 ◽

2021 ◽

Author(s):

Jonathan C. Yeh ◽

Arielle R. Urman ◽

Robert J. Besaw ◽

Laura E. Dodge ◽

Kathleen A. Lee ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

Advance Care Planning ◽

Hospital Length ◽

Hospitalized Patients ◽

Hospital Length Of Stay ◽

Care Planning ◽

Do Not Resuscitate ◽

Patients With Cancer ◽

Advance Care

PURPOSE Palliative care (PC) improves outcomes in advanced cancer, and guidelines recommend early outpatient referral. However, many PC teams see more inpatient than outpatient consults. We conducted a retrospective study of hospitalized patients with cancer to quantify exposure to inpatient and outpatient PC and describe associations between PC and end-of-life (EOL) quality measures. METHODS We identified all decedents admitted to an inpatient oncology unit in 1 year (October 1, 2017-September 30, 2018) and abstracted hospitalization statistics, inpatient and outpatient PC visits, and EOL outcomes. Descriptive statistics, univariate tests, and multivariate analysis evaluated associations between PC and patient outcomes. RESULTS In total, 522 decedents were identified. 50% saw PC; only 21% had an outpatient PC visit. Decedents seen by PC were more likely to enroll in hospice (78% v 44%; P < .001), have do-not-resuscitate status (87% v 55%; P < .001), have advance care planning documents (53% v 31%; P < .001), and die at home or inpatient hospice instead of in hospital (67% v 40%; P < .01). Decedents seen by PC had longer hospital length-of-stay (LOS; 8.4 v 7.0 days; P = .03), but this association reversed for decedents seen by outpatient PC (6.3 v 8.3 days; P < .001), who also had longer hospice LOS (46.5 v 27.1 days; P < .01) and less EOL intensive care (6% v 15%; P < .05). CONCLUSION PC was associated with significantly more hospice utilization and advance care planning. Patients seen specifically by outpatient PC had shorter hospital LOS and longer hospice LOS. These findings suggest different effects of inpatient and outpatient PC, underscoring the importance of robust outpatient PC.

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