ArticlePDF Available

A Call for North Carolina to Surround the Seriously Ill and Caregivers with Interprofessional Collaborative Teams

Authors:

Abstract and Figures

As the population ages, the number of people living with serious illness is increasing and the demand for quality, timely, person-centered palliative care is growing. We need specialized, trained health professionals working in collaborative teams to answer this call. It is upon health care leaders and policymakers to jointly design, build, and sustain a workforce to ensure all North Carolinians have access to care during a serious illness or end of life.
Content may be subject to copyright.
INVITED COMMENTARY
249
NCMJ vol. 81, no. 4
ncmedicaljournal.com
As the population ages, the number of people living with
serious illness is increasing and the demand for quality,
timely, person-centered palliative care is growing. We need
specialized, trained health professionals working in collab-
orative teams to answer this call. It is upon health care lead-
ers and policymakers to jointly design, build, and sustain
a workforce to ensure all North Carolinians have access to
care during a serious illness or end of life.
As an educator, researcher, health care leader, nurse,
member of the North Carolina Institute of Medicine’s
Task Force on Serious Illness Care, and caretaker over the
last 10 years, I have observed North Carolina’s response to
the growing care demands of individuals with serious illness
and their families. As a caretaker of my 84-year-old mother,
over the years I have experienced the personal challenges of
the serious illness journey as we have navigated the maze of
finding the right health care team, facilities for serious illness
hospitalizations, home health, hospice, assisted living, and
now home care during a pandemic. These experiences have
provided a laboratory for understanding the reality of seri-
ous illness care within our state. One thing that is constantly
clear: individuals with serious illness need timely access to
quality care provided by an interprofessional collaborative
team.
This commentary is a call to action for North Carolina to
grow its specialty palliative care and hospice workforce by:
1) developing and enhancing palliative and hospice inter-
professional collaborative care teams through purposeful
designs of proofs of concept in various transitional models
of care (e.g., acute care, community, hospice); 2) recruiting
and building a sustainable palliative specialist workforce that
can lead, train, and prepare interprofessional collaborative
team practices to enhance engagement with serious illness
patients and families to meet their goals of care; and 3) pur-
suing legislative and grant funding for the development of a
sustainable serious illness workforce and further research
on the evaluation of serious illness workforce capacity and
impacts.
Team Science and Health Systems Science
As a scientist, I subscribe to the “science of team science”
(SciTS) methodological strategy aimed at understanding
and enhancing the processes and outcomes of collabora-
tive, team-based research. SciTS seeks to shed light on what
makes effective teams produce the best outcomes [1]. The
Institute for Healthcare Improvement Triple Aim Initiative
goals of improved patient experience, improved care for
patient populations, and decreased cost utilize teams to
create change within our health systems [2, 3]. In addition,
applying the creativity of new science to building stronger
academic and clinical partnerships within pallative care
delivery can assist in creating new care models. For exam-
ple, the American Medical Association in 2013 recognized
a gap in medical school education and initiated a change
process that involved recruiting innovative thinkers through
the Change in Medical Education Consortium; as part of that
work, the East Carolina University Brody School of Medicine
(BSOM) was selected as the first of 11 schools to develop a
Redesigning Education to Accelerate Change in Healthcare
(REACH) team. As a member of this process, I witnessed
the powerful impact of a curriculum redesign that incorpo-
rated quality improvement principles, tools, and interprofes-
sional collaborative teams [4-6]. This work also culminated
in the national development of Health Systems Science,
which is the fundamental understanding of how health care
is delivered, how health care professionals work together to
deliver that care (team science), and how health systems
can improve health (quality principles with interprofessional
collaborative teams) [7].
Although SciTS and Health Systems Science are new and
still undergoing evaluation and further study, they are only
A Call for North Carolina to Surround
the Seriously Ill and Caregivers with
Interprofessional Collaborative Teams
Donna Lake
Electronically published July 6, 2020.
Address correspondence to Donna Lake, 106 Cassedale Dr, Goldsboro,
NC 27534 (laked@ecu.edu).
N C Med J. 2020;81(4):249-253. ©2020 by the North Carolina Institute
of Medicine and The Duke Endowment. All rights reserved.
0029-2559/2020/81408
NCMJ vol. 81, no. 4
ncmedicaljournal.com
250
the beginning of a movement toward acquiring new thinking
to improve care delivery.
Workforce Demand
As the palliative care workforce grows, especially in
oncology and geriatrics [8] and in pediatrics [9], there is
evidence that interprofessional collaborative teams are
also growing and showing improved quality of care and
cost savings [9-12]. Most studies have shown that palliative
care reduces the cost of health care by $1,285–$20,719 for
inpatient care, $1,000–$5,198 for outpatient and inpatient
combined, $4,258 for home-based, and $117–$400 per day
for home/hospice combined outpatient/inpatient palliative
care [12]. Across the United States, the National Palliative
Care Registry recorded 1,404 palliative care teams across
1,905 care settings and 2.6 million initial patient consultants
in 2020 [13]. The National Palliative Care Registry Seminar
reported in 2008 that 41% of participating programs had
a full, core interprofessional team of physician, advanced
practice nurse (APRN - typically a nurse practitioner), reg-
istered nurse, social worker, and chaplain, with a 150%
increase in full-time-equivalent APRNs since 2008 [14]. The
registry also found a reported increase of 54 pediatric pal-
liative programs in teaching hospital academic centers and
medium 200-bed facilities [14].
From a population health perspective, North Carolina is
the ninth most populous state, with 10.49 million residents
[15]. North Carolina also has a high prevalence of economic
distress, with 40% of all counties ranked as Tier One, being
the most distressed based on average unemployment,
household income, adjusted property tax per capita, and
population growth [16]. In addition to health professional
workforce challenges to include physicians, nurses, social
workers, and mental health providers, key issues confront-
ing health care in North Carolina include the rising cost of
coverage, gaps in coverage, increased chronic conditions, an
aging population, and limited access to care facing most of
our rural populations.
The North Carolina Institute of Medicine’s Task Force on
Serious Illness Care recognized the critical importance of
developing a system and culture that aims to improve the
quality of living for individuals with serious illness, their
families, and their communities. Among all adults aged 65
and over, it is estimated that around half will develop an
illness serious enough to need long-term care or services,
and about one in seven will need service for longer than five
years [17].
Workforce Challenges
A recent study by the Center to Advance Palliative Care
found that two-thirds of community palliative care programs
are operated by hospitals or hospice care facilities, with the
remainder operated by home health agencies, long-term
care facilities, and office practices or clinics [18]. Only 6%
of programs serve children only, and less than one-quarter
(24%) treat children in addition to adults [18].
Recent national estimates show the nation has 4,400
hospice and palliative medicine specialists, the equivalent of
1 for every 20,000 older adults with serious illness [19]. In
order to meet the growing need for specialty palliative care,
an additional 6,000-10,000 specialty palliative care physi-
cians and an equal number of advanced practice nurses
would be needed (email communication, Julie Spero, MSPH,
director of the North Carolina Health Professions Data
System, UNC, February 26, 2020). In addition, only 25%
of national hospital-based palliative care programs meet
staffing recommendations (include at least one physician,
one advanced practice nurse or registered nurse, one social
worker, and one chaplain) [19]. In community palliative care
services, training, demand, and turnover were cited as work-
force-related barriers to access [19].
In North Carolina, there are a reported 221 active,
licensed physicians in practice who were board certified in
Hospice and Palliative Medicine [20]. Palliative care has
grown significantly over the past two decades—less than
25% of hospitals had a palliative care program in 2000 [21],
and 93.7% of hospitals with more than 300 beds had a pal-
liative care team in 2019 [22]. Despite the growth of the
field, access to palliative care varies widely and many com-
munities lack access, particularly in rural areas where health
care access remains challenging across types of care. For
example, in 2019 there were 62 counties in North Carolina
without a physician that specialized in palliative medicine
[23]. Overall, hospital palliative care is most common in
urban communities.
North Carolina is experiencing workforce shortages in
pallative and hospice care. These shortages limit access to
care and are expected to increase over the coming decades
due to provider burnout, an aging workforce, low wages,
and an inadequate workforce pipeline [24]. The bulk of day-
to-day care is provided by frontline staff, and the median
pay for home health aides in 2018 was $11.57 per hour, or
$24,060 per year [25]. In 2019, there was an 82% turn-
over rate among home care workers [26]. Over the next
two decades, the number of patients eligible for palliative
care is expected to grow by 20%, while the physician work-
force grows by only 1% [20]. Nurses are critical providers of
palliative care and interact with those who are seriously ill
and their families more than any other sector of the work-
force [27]. While there is not an overall shortage of nurses
in North Carolina, there is disparate distribution of nurses
within the state, such as in rural counties [28].
These challenges ring a clear sense of urgency for
patients and their families, policymakers and legislators,
and health professionals to reprioritize our commitment to
improving pallative care and hospice care.
Interprofessional Collaborative Team-based Care
Interprofessional collaboration in health care, defined as
workers from different professional backgrounds working
251
NCMJ vol. 81, no. 4
ncmedicaljournal.com
together with patients, families, caregivers, and communi-
ties, dates back to 1972, with the Institute of Medicine call-
ing for team-based patient care as a way to improve patient
outcomes and safety. In 2009, the United States formed the
Interprofessional Education Collaborative (IPEC), involving
over 20 health professional education associations. For over
10 years, students have been learning how to work together
for improved patient care and health outcomes in schools of
medical, nursing, pharmacy, and physical therapy, however,
this has been a slower process in practice [29].
Interprofessional collaboration supports person-cen-
tered care and takes place through teamwork; it is more
than sharing data and efficient communication between
nurses and physicians. It requires team members to engage
with the patient and with each other, a process that relies on
trust, respect, and understanding of each other’s role in the
care of the patient and family. Interprofessional collabora-
tion in health care requires culture change [30].
A growing body of literature has produced models for
interprofessional collaborative practice and identified core
competencies. In the 2016 release of the Core Competencies
for Interprofessional Collaborative Practice, the IPEC Board
updated its original 2011 document to reflect the focal areas
of 1) values and ethics, 2) roles and responsibilities, 3) inter-
professional communication, and 4) teams and teamwork
[29]. In North Carolina, Four Seasons Compassion for Life, a
state leader in serious illness care, uses an interprofessional
collaborative practice model to develop competency in care
teams across these focal areas (Figure 1). Primary elements
of the model include continuous assessment of team per-
formance and learning, training on team-based care, and
relationship building across team members. This model also
demonstrates how the team can deliver goal-concordant,
coordinated, collaborative interprofessional team care for
individuals with serious illness via competent communi-
cation skills and teamwork with physicians, nurses, social
workers, chaplains, and volunteers. Of particular impor-
tance in collaborative team-based care for individuals with
serious illness is the recognition of the individual and their
family as integral members of the care team.
figure 1.
Interprofessional Collaborative Practice Model
The Four Seasons Interprofessional Collaborative Practice (IPCP) model in end-of-life care guides the development of
IPCP competency in four domains: roles and responsibilities of each team member, communication, collaboration, and
values and ethics.
Source. Four Seasons Compassion for Life. Reprinted with permission from http://www.ncmedicaljournal.com/content/79/4/256.full.pdf.
NCMJ vol. 81, no. 4
ncmedicaljournal.com
252
Strategies for Building a Stronger Health
Professional Workforce
There is evidence indicating an improvement in outcomes
for patients, caregivers, and health systems in the area of
serious illness care when specialty palliative care teams are
integrated. Based on the literature, palliative care may occur
at the time of diagnosis and throughout the course of a seri-
ous illness. The palliative care field has experienced growth
in the following areas: consultation teams, outpatient clin-
ics, community-based models, and medical specialty soci-
eties that recommend specialty palliative care involvement.
However, the data also shows significant stressors in lack of
specialty providers and overwhelming patient demand.
There is a need for data regarding workforce size, training
pipeline, training needs, and care delivery. Early data from
an innovative research team at the Duke Cancer Institute
suggests the average annual growth of palliative care fellow-
ship programs in 2009-2018 (25 fellowship positions per
year) will continue through 2028, with an average sustain-
able number of 575 fellowships per year [31]. The research-
ers determined an average patient load by analyzing the
patient-to-physician service ratio based on Medicare enroll-
ees set to receive palliative care, and projected a future aver-
age of 23 seriously-ill-to-critical patient visits per day [31].
The researchers stated the gaps will make palliative care
unsustainable over time, arguing that there exists no tenable
way forward without the increased use of interprofessional
palliative care team members in the assessment and man-
agement of seriously ill patients [31].
There is also a need for legislative policies at the national
and state levels to enhance health professional workforce
numbers. For example, US House Bill 647, the Palliative
Care and Hospice Education and Training Act, addresses the
adequacy and sustainability of the specialty palliative care
workforce and interprofessional team-based funding [32].
As of this writing, the bill has passed the House and is await-
ing approval in the Senate. If this legislation passes, it will
fund 50 physicians in the first five years and 183 interpro-
fessional trainees through palliative care academic career
development awards, as well as funding training centers and
short-term intensive training programs to build clinical skills
in caring for people with serious illness. This would meet a
significant need, as there are currently only six palliative care
fellowship positions for advanced practice registered nurses,
with three more in the planning stages; six graduate schools
of nursing have palliative care as an additional subspecialty
focus, and eight programs offer masters degrees or certifi-
cations in palliative care (personal communication, pallia-
tive care specialist Connie Dahlin, director of Professional
Practice, Hospice & Palliative Nurses Association).
The current education and training programs for cer-
tified palliative care team members are not sufficient to
meet growing needs. Evidence shows that many practic-
ing health care professionals report a lack of education in
the knowledge and skills needed to practice palliative care
[31]. Therefore, there is a need for a champion leader to
create an innovative statewide planning team to provide
legislative proposals and funding for specialty training for
the serious illness workforce during this time of increased
demand for this specialty [32]. North Carolinians deserve
timely, accessible health care during a serious illness or end
of life, and this is a proposal to consider in moving us for-
ward together.
Donna Lake, PhD, RN, FAAN professor, Advanced Nursing Practice
and Education, College of Nursing, East Carolina University, Greenville,
North Carolina.
Acknowledgments
Potential conflicts of interest. D.L. reports no relevant conflicts of
interest.
References
1. Baker B. The science of team science: an emerging field delves
into the complexities of effective collaboration. BioScience.
2015;65(7):639–644. https://doi.org/10.1093/biosci/biv077
2. Stiefel M, Nolan K. A Guide to Measuring the Triple Aim: Population
Health, Experience of Care, and Per Capita Cost. Boston, MA: Insti-
tute for Healthcare Improvement; 2012.
3. Berwick DM, Nolan TW, Whittington J. The triple aim: care, health,
and cost. Health Aff (Millwood). 2008;27(3):759-769. doi: 10.1377/
hlthaff.27.3.759
4. Lawson L, Lake D, Lazorick S, Reeder T, Garris J, Baxley EG. Develop-
ing tomorrow’s leaders: a medical student distinction track in health
system transformation and leadership. Acad Med. 2019;94(3):358-
363. doi: 10.1097/ACM.0000000000002509
5. Walsh DS, Lazorick S, Lawson L, et al. The Teachers of Quality Acad-
emy: evaluation of the effectiveness and impact of a health systems
science training program. Am J Med Qual. 2019;34(1):36-44. doi:
10.1177/1062860618778124
6. Baxley EG, Lawson L, Garrison HG, et al. The Teachers of Quality
Academy: a learning community approach to preparing faculty to
teach health systems science. Acad Med. 2016;91(12):1655-1660.
doi: 10/1097/ACM.0000000000001262
7. Higginson J, Lake D. Principles of Teamwork & Team Science. In:
Skochelak SE, ed. AMA Education Consortium: Health Systems Sci-
ence. 1st ed. Chicago, IL: Elsevier; 2016:81-91.
8. Morrison RS. Models of palliative care delivery in the United States.
Curr Opin Support Palliat Care. 2013;7(2):201–206. doi: 10.1097/
SPC.0b013e32836103e5
9. Hughes MT, Smith TJ. The growth of palliative care in the United
States. Annu Rev Public Health. 2014;35:459-475. doi: 10.1146/an-
nurev-publhealth-032013-182406
10. Ahluwalia SC, Chen C, Raasen L, et al. A systematic review in sup-
port of the National Consensus Program Clinical Practice Guidelines
for Quality Palliative Care, Fourth Edition. J Pain Symptom Manage.
2018;56(6):831-870. doi: 10.1016/j.jpainsymman.2018.09.008
11. Cassel JB, Bowman B, Rogers M, Spragens LH, Meier DE, Palliative
Care Leadership Centers. Palliative care leadership centers are key
to the diffusion of palliative care innovation. Health Aff (Millwood).
2018;37(2):231-239. doi: 10.1377/hlthaff.2017.1122
12. Yadav S, Heller IW, Schaefer N, et al. The health care cost of pal-
liative care for cancer patients: a systematic review. Support Care
Cancer. 2020. doi: 10.1007/s00520-020-05512-y
13. National Palliative Care Registry website. https://registry.capc.org/.
Accessed June 18, 2020.
14. Rogers M, Heitner R. Latest Trends and Insights from the National
Palliative Care Registry. Center to Advance Palliative Care website.
https://www.capc.org/events/recorded-webinars/latest-trends-
and-insights-from-the-national-palliative-care-registry/. Published
August 13, 2019. Accessed Jun 18, 2020.
15. United States Census Bureau. QuickFacts: North Carolina. United
States Census Bureau website. https://www.census.gov/quick-
facts/NC. Accessed February 25, 2020.
253
NCMJ vol. 81, no. 4
ncmedicaljournal.com
16. North Carolina Department of Commerce. 2019 North Carolina
Development Tier Designations. Raleigh, NC: North Carolina De-
partment of Commerce; 2019. https://files.nc.gov/nccommerce/
documents/files/2019-Tiers-memo_asPublished.pdf. Accessed Jun
18, 2020.
17. North Carolina Institute of Medicine. Improving Serious Illness
Care in North Carolina. Chapter 1: Introduction And Overview.
Morrisville, NC: NCIOM; 2020. http://nciom.org/wp-content/
uploads/2020/06/NCIOM_Improving-Serious-Illness-Care-in-
North-Carolina_Full-Report_April-2020.pdf. Accessed April 15,
2020.
18. Haitner R, Rogers M, Meier DE. Mapping Community Palliative Care:
A Snapshot. Center to Advance Palliative Care website. https://
www.capc.org/documents/700/. Published December 16, 2019.
Accessed June 15, 2020.
19. National Palliative Care Registry. Research in the Field: Staffing and
Workforce. National Palliative Care Registry website. https://regis-
try.capc.org/metrics-resources/research-in-the-field/. Accessed
June 19, 2020.
20. North Carolina Institute of Medicine. Improving Serious Illness
Care in North Carolina. Chapter 5: Development of the Health and
Human Services Workforce and Infrastructure to Improve Serious
Illness Care. Morrisville, NC: NCIOM; 2020. http://nciom.org/
wp-content/uploads/2020/06/Chapter-5.pdf. Accessed April 15,
2020.
21. Palliative Care Growth Trend Continues, According to Latest Center
to Advance Palliative Care Analysis [press release]. New York, NY:
Center to Advance Palliative Care; September 2, 2014. https://www.
capc.org/about/press-media/press-releases/2014-9-2/palliative-
care-growth-trend-continues-according-latest-center-advance-
palliative-care-analysis/. Accessed January 30, 2020.
22. Center to Advance Palliative Care, National Palliative Care Research
Center. America’s Care of Serious Illness: A State-by-State Report
Card on Access to Palliative Care in Our Nation’s Hospitals. New
York, NY: Center to Advance Palliative Care; 2019. https://report-
card.capc.org/wp-content/uploads/2019/09/CAPC_Report-
Card19-Digital_9_19.pdf. Accessed January 30, 2020
23. Data query: Physicians, Hospice and Palliative Medicine. The Ce-
cil G. Sheps Center for Health Services Research. North Carolina
Health Professional Supply Data. NC Health Workforce website.
https://nchealthworkforce.unc.edu/supply/. Published 2020. Ac-
cessed February 5, 2020.
24. Harrison KL, Dzeng E, Ritchie CS, et al. Addressing palliative care
clinician burnout in organizations: a workforce necessity, an ethi-
cal imperative. J Pain Symptom Manage. 2017;53(6):1091-1096.
doi:10.1016/j.jpainsymman.2017.01.007
25. U.S. Bureau of Labor Statistics. Occupational Outlook Handbook:
Home Health Aides and Personal Care Aides. U.S. BLS website.
https://www.bls.gov/ooh/healthcare/home-health-aides-and-per-
sonal-care-aides.htm#tab-1. Published 2019. Accessed February 5,
2020.
26. Marcum A. The 2019 Home Care Benchmarking Study. HomeCare-
Pulse.com. https://www.homecarepulse.com/articles/letter-from-
aaron-marcum-2019-home-care-benchmarking-study/. Published
2019. Accessed June 19, 2020.
27. Schroeder K, Lorenz K. Nursing and the future of palliative care. Asia
Pac J Oncol Nurs. 2018;5(1):4-8. doi:10.4103/apjon.apjon_43_17
28. Fraher E. The Nursing Workforce, Trends and Challenges: Presen-
tation to NCGA Joint Legislative Workforce Development System
Reform Oversight Committee; 2016; Raleigh, NC. https://www.
shepscenter.unc.edu/wp-content/uploads/2016/04/Fraher_
NCGA_3_1_16_FINAL.pdf.
29 Interprofessional Education Collaborative Expert Panel. Core Com-
petencies for Interprofessional Collaborative Practice. Washing-
ton, D.C.: Interprofessional Education Collaborative; 2011. https://
www.aacom.org/docs/default-source/insideome/ccrpt05-10-11.
pdf?sfvrsn=77937f97_2. Accessed April 28, 2020.
30. CFAR Inc., Tomasik J, Fleming C. Promising Interprofessional Col-
laboration Practices. Robert Wood Johnson Foundation website.
https://www.rwjf.org/en/library/research/2015/03/lessons-from-
the-field.html. Published March 10, 2015. Accessed June 19, 2020.
31. Kamal AH, Wolf SP, Troy J, et al. Policy changes key to promoting
sustainability and growth of the specialty palliative care work-
force. Health Aff (Millwood). 2019;38(6):910–918. doi: 10.1377/
hlthaff.2019.00018
32. Palliative Care and Hospice Education and Training Act, HR 647
(2019).
... As we move to the second invited commentary, "A Call for North Carolina to Surround the Seriously Ill and Caregivers with Interprofessional Collaborative Teams," the focus shifts to challenges facing members of our health care workforce as they navigate the complex needs of the seriously ill [5]. Lake, a health care leader, clinician, educator, and caregiver, provides a perspective from years of observational experience. ...
... Turning to workforce shortages and care coordination gaps, Lake focuses on the growing need for greater expertise in serious illness and palliative care specialties [5]. Highlighting the need for interprofessional collaboration, she suggests a culture shift is needed to create a more focused team practice that would reduce fragmented care and enhance provider, patient, and family goals. ...
Article
This volume was planned prior to the COVID-19 pandemic as the North Carolina Institute of Medicine (NCIOM) completed a yearlong task force on serious illness. Beyond the task force report, we wanted to dedicate a special edition of the NCMJ to serious illness issues. We commissioned authors who could discuss the challenges, the current practices, and the extensive personal and professional skills needed to navigate these complicated medical diagnoses that often end in death. Little did we know how timely this would be in light of the current pandemic, and we can only speculate on how the world will look as this is published. Our pre-COVID planning reflected personal experiences we all face with the common denominator of serious illness impacting and shaping our lives. As guest editors, we considered how this NCMJ edition would address personal concerns for you, our reader, as well as ourselves. A physician, a social worker, and a nurse, we each have our stories and we want to invite you to lean in and bring both your head and your heart to this reading. We start by relating two very personal experiences that shaped not only life following loss, but also career choices, clinical practices, and scholarship. As you focus on this journal's content, we hope you will also reflect on the people you care for, as well as the issues we all inevitably face.
... As the Latino population continues to age in place, issues of cancer management and EOL care will increase. Only 38 out of 100 North Carolina counties have palliative care specialists and rural areas are least likely to have these services (Lake, 2020). No known studies examined palliative care access for rural-dwelling Latino persons. ...
Article
Full-text available
Early integration of palliative care after a diagnosis of cancer improves outcomes, yet such care for Latino populations is lacking in rural regions of the United States. We used a participatory action research design with Latino community leaders from emerging immigrant communities in North Carolina to explore sociocultural perspectives on cancer and death. Thematic analysis was conceptualized as Four Kinds of Hard represented by four themes: Receiving an Eviction Notice, Getting in the Good Book, Talking is (Sometimes) Taboo, and Seeing Their Pain Makes us Suffer. These themes captured fears of deportation, coping with cancer through faithfulness, ambivalence about advance care planning, and a desire to spare families from suffering. Findings suggest strategies to improve conversations about end-of-life wishes when facing advanced illness and death. This study demonstrates the importance of training Latino community leaders to improve palliative care and bridge service gaps for Latino families living in emerging rural communities.
Article
Purpose: A palliative care infrastructure is lacking for Latinos with life-threatening illness, especially in rural regions of the United States. The purpose of this study was to develop and evaluate a community-based palliative care lay health advisor (LHA) intervention for rural-dwelling Latino adults with cancer. Methods: An exploratory mixed-methods participatory action research design was carried out by an interprofessional research team that included community and academic members. Fifteen Latino community leaders completed a 10-hour palliative care training program and then served as palliative care LHAs. Although 45 Latinos with cancer initially agreed to participate, four withdrew or died and six were not reachable by the LHAs, for a final total of 35 patient participants.The trained palliative care LHAs delivered information on home symptom management and advance care planning to assigned participants. Palliative care nurses led the training and were available to the LHAs for consultation throughout the study. The LHAs made an average of three telephone calls to each participant. The Edmonton Symptom Assessment System-Revised (ESAS-r) and the four-item Advance Care Planning Engagement Survey (ACPES-4) were administered pre- and postintervention to determine the intervention's effectiveness. Encounter forms were transcribed, coded, and analyzed using case comparison. Results: The major finding was that significant improvements were shown for all four items of the ACPES-4 among both the LHAs (posttraining) and the participants (postintervention). Information on advance care planning was shared with 74.3% of the 35 participants. Participants showed clinical improvement in physical symptom scores and clinical deterioration in emotional symptom scores following the intervention, although these changes did not reach statistical significance. The advisors noted that participants were anxious about how to explain cancer to children, the uncertainty of their prognosis, and medical expenses. This sample was younger than those of other cancer studies; 51.4% were under age 50 and 73.1% had at least one child in the home. Conclusions: A community-based palliative care LHA-nurse partnership was shown to be a feasible way to engage in conversations and deliver information about advance care planning to rural-dwelling Latino adults with cancer. The positive results led to the regional cancer center's decision to select "cultural care" as its 2022 goal for maintaining its accreditation with the Commission on Cancer.
Article
Objective We examined the effectiveness of nurse-led training on palliative care knowledge and advance care planning readiness with Latino leaders. Methods As part of a larger participatory action research study, we used a one-group, pretest–posttest design to evaluate Latino leaders’ preparation to share information during home visits with Latinos with advanced cancer. Using Spanish and English materials, 2 palliative care nurse specialists provided a 10-hour training plus a 6-month, post-training booster session. The Palliative Care Knowledge Scale (PaCKS) was administered at baseline (T0), post-training (T1), and 10 months post-training (T2). The Advance Care Planning and Engagement Survey (ACPES) was administered at T0 and T2. Results Among the 15 leaders, 93% were women and 73% were of Mexican heritage. There was a significant increase in the PaCKS score between T0 and T1 ( Md T0 = 10; Md T1 = 12, z = −2.15, p exact = .031) and T0 and T2 ( z = −2.49, p exact = .008) with a medium-to-large effect size ( r = .45). There was a significant increase in ACPES scores between T0 and T2. Conclusions Nurse-led training of Latino community leaders improves palliative care knowledge and may bolster the palliative care infrastructure in emerging Latino communities.
Article
Introduction The rezadora, a lay spiritual leader, provides support to Latino families as they provide end-of-life (EOL) care for loved ones. The purpose of this study was to learn about the work of the rezadora in Guatemala as a resource for Latinos with serious illness in the United States. Methods An ethnographic exploratory case study was conducted during summer 2018 in rural Guatemala. We interviewed three rezadoras who resided in two villages. The study yielded two cases, the single case and the paired case, which allowed for a holistic view of how the rezadora serves the community. Results Content and thematic analysis led to two themes: Essence of being called and Power of prayerful song. Essence of being called was represented by the prominence of the rezadora and their perpetual faith work. Power of prayerful song was characterized through the mission, customs, and the presence of the rezadora. A good death was aided by the rezadora in this context. Conclusions As the Latino population ages in place, the need for palliative and EOL care services will increase. Lay spiritual leaders could enhance the palliative care teams in these communities and improve the quality of life for Latinos with serious illness.
Article
Full-text available
Specialized palliative care teams improve outcomes for the steadily growing population of people living with serious illness. However, few studies have examined whether the specialty palliative care workforce can meet the growing demand for its services. We used 2018 clinician survey data to model risk factors associated with palliative care clinicians leaving the field early, and we then projected physician numbers from 2019 to 2059 under four scenarios. Our modeling revealed an impending "workforce valley," with declining physician numbers that will not recover to the current level until 2045, absent policy change. However, sustained growth in the number of fellowship positions over ten years could reverse the worsening workforce shortage. There is an immediate need for policies that support high-value, team-based palliative care through expansion in all segments of the specialty palliative care workforce, combined with payment reform to encourage the deployment of sustainable teams.
Article
Full-text available
Problem: Calls for medical education reform focus on preparing physicians to meet the challenges of today's complex health care system. Despite implementing curricula focused on health systems science (HSS), including quality improvement (QI), patient safety, team-based care, and population health, a significant gap remains in training students to meet the system's evolving needs. Approach: Brody School of Medicine redesigned its curriculum to prepare leaders to effect health system change. This included development of a distinction track in health system transformation and leadership, known as the Leaders in INnovative Care (LINC) Scholars Program. Selected LINC scholars spend eight weeks in a summer immersion experience designed to provide foundational knowledge and practical application. Outcomes: Two cohorts (15 LINC scholars) completed the summer immersion in 2015 and 2016. Participants demonstrated significant improvement in knowledge and confidence and continue to be engaged in ongoing QI projects throughout the health system. All scholars have presented their work at local, regional, or national meetings. Students rated patient navigation experiences, health system leader interviews, QI project application, and interprofessional experiences as most valuable and recommended adoption in the curriculum for all students. Next steps: A distinction track with an immersion component can be an effective method to pilot innovative HSS components for the entire curriculum while preparing a cadre of learners with advanced expertise. To longitudinally measure HSS knowledge change, behavioral impact, and organization-level outcomes, next steps must focus on development of workplace-based assessments, establishment of learner portfolios, and longitudinal tracking of student outcomes, including career trajectory.
Article
Full-text available
Context: Palliative care continues to be a rapidly growing field aimed at improving quality of life for patients and their caregivers. Objectives: The purpose of this review was to provide a synthesis of the evidence in palliative care to inform the fourth edition of the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care. Methods: Ten key review questions addressing eight content domains guided a systematic review focused on palliative care interventions. We searched eight databases in February 2018 for systematic reviews published in English from 2013, after the last edition of National Consensus Project guidelines was published, to present. Experienced literature reviewers screened, abstracted, and appraised data per a detailed protocol registered in PROSPERO. The quality of evidence was evaluated using the Grading of Recommendations, Assessment, Development and Evaluations criteria. The review was supported by a technical expert panel. Results: We identified 139 systematic reviews meeting inclusion criteria. Reviews addressed the structure and process of care (interdisciplinary team care, 13 reviews; care coordination, 18 reviews); physical aspects (48 reviews); psychological aspects (26 reviews); social aspects (two reviews); spiritual, religious, and existential aspects (11 reviews); cultural aspects (three reviews); care of the patient nearing the end of life (grief/bereavement programs, six reviews; final days of life, two reviews); ethical and legal aspects (36 reviews). Conclusion: A substantial body of evidence exists to support clinical practice guidelines for quality palliative care, but the quality of evidence is limited.
Article
Full-text available
This project aimed to evaluate the effectiveness of a faculty development program in health systems science (HSS)—the Teachers of Quality Academy (TQA). Participants in TQA and a comparison group were evaluated before, during, and 1 year after the program using self-perception questionnaires, tests of HSS knowledge, and tracking of academic productivity and career advancement. Among program completers (n = 27), the mean self-assessed ratings of knowledge and skills of HSS topics immediately after the program, as compared to baseline, increased significantly compared to controls (n = 30). Participants demonstrated progressive improvement of self-perceived skills and attitudes, and retention of HSS knowledge, from baseline to completion of the program. Participants also demonstrated substantially higher HSS scholarly productivity, leadership, and career advancement compared to the comparison group. The TQA effectively created a faculty cadre able to role model, teach, and create a curriculum in HSS competencies for medical students, resident physicians, and other health professionals.
Article
Full-text available
Problem Although efforts to integrate health systems science (HSS) topics, such as patient safety, quality improvement (QI), interprofessionalism, and population health, into health professions curricula are increasing, the rate of change has been slow. Approach The Teachers of Quality Academy (TQA), Brody School of Medicine at East Carolina University, was established in January 2014 with the dual goal of preparing faculty to lead frontline clinical transformation while becoming proficient in the pedagogy and curriculum design necessary to prepare students in HSS competencies. The TQA included the completion of the Institute for Healthcare Improvement Open School Basic Certificate in Quality and Safety; participation in six 2-day learning sessions on key HSS topics; completion of a QI project; and participation in three online graduate courses. Outcomes Twenty-seven faculty from four health science programs completed the program. All completed their QI projects. Nineteen (70%) have been formally engaged in the design and delivery of the medical student curriculum in HSS. Early into their training, TQA participants began to apply new knowledge and skills in HSS to the development of educational initiatives beyond the medical student curriculum. Next Steps Important next steps for TQA participants and program planners include further incorporation as faculty advisors and contributors to the full implementation of the longitudinal HSS curriculum; expanded involvement with the Leaders in Innovative Care Scholars student leadership distinction track; continued in-depth evaluation of the impact of TQA participation on patient care, teaching, and role modeling; and the recruitment of the next cohort of TQA participants.
Article
Between 2000 and 2015 the proportion of US hospitals with more than fifty beds that had palliative care programs tripled, from 25 percent to 75 percent. The rapid adoption of this high-value program, which is voluntary and runs counter to the dominant culture in US hospitals, was catalyzed by tens of millions of dollars in philanthropic support for innovation, dissemination, and professionalization in the palliative care field. We describe the dissemination strategies of the Center to Advance Palliative Care in the context of the principles of social entrepreneurship, and we provide an in-depth look at its hallmark training initiative, Palliative Care Leadership Centers. Over 1,240 hospital palliative care teams have trained at the Leadership Centers to date, with 80 percent of them instituting palliative care services within two years. We conclude with lessons learned about the role of purposeful technical assistance in promoting the rapid diffusion of high-value health care innovation.
Article
Clinician burnout reduces the capacity for providers and health systems to deliver timely, high quality, patient-centered care and increases the risk that clinicians will leave practice. This is especially problematic in hospice and palliative care: patients are often frail, elderly, vulnerable and complex; access to care is often outstripped by need; and demand for clinical experts will increase as palliative care further integrates into usual care. Efforts to mitigate and prevent burnout currently focus on individual clinicians. However, analysis of the problem of burnout should be expanded to include both individual- and systems-level factors as well as solutions; comprehensive interventions must address both. As a society, we hold organizations responsible for acting ethically, especially when it relates to deployment and protection of valuable and constrained resources. We should similarly hold organizations responsible for being ethical stewards of the resource of highly trained and talented clinicians through comprehensive programs to address burnout.
Article
To summarize the current United States healthcare system and describe current models of palliative care delivery. Palliative care services in the USA have been heavily influenced by the public-private fee-for-service reimbursement system. Hospice provides care for 46% of adults at the end-of-life under the Medicare hospice benefit. Palliative care teams in hospitals have rapidly expanded to provide care for seriously ill patients irrespective of prognosis. To date, over two-thirds of all hospitals and over 85% of mid to large size hospitals report a palliative care team. With the passage of the Patient Protection and Affordable Care Act of 2010, healthcare reform provides an opportunity for new models of care. Palliative care services are well established within hospitals and hospice. Future work is needed to develop quality metrics, create care models that provide services in the community, and increase the palliative care workforce.