Promoting Nurse Leadership in Palliative Care

At the 2018 CAPC National Seminar, CAPC and the Hospice and Palliative Nurses Association hosted a focus group for nurse-led palliative care programs. There, twenty nurses leading palliative care programs throughout the United States discussed current challenges, and the need for resources to further support them in their unique roles.

Read along as Constance Dahlin provides background on the current landscape, focus group learnings, and solutions to position palliative care nurse leaders for success.

According to the Institute for Health Improvement, a combination of clinical and leadership skills promote innovative leadership and changes in health care (Angood et. al 2014). Within palliative care, leadership is the process of empowering clinical teams to transform the care of serious illness.

Given the rapid growth of the palliative care field, interdisciplinary leadership has become essential (Dahlin et. al. 2018). Nurses in the United States represent the largest — and most trusted — segment of healthcare professionals (US Dept of Health and Human Resources 2017, Gallop 2018). As the number and breadth of palliative care programs in the US expands, cultivating nurse leaders will not only be necessary to meet the need, but will also bring a unique perspective and skill set to the role of palliative care program leader.

Nurses often have the first and most consistent contact with patients and families at the bedside in the home, rehabilitation setting, long-term care setting, hospital, or other settings in the community such as clinics, schools, and community centers. Nurse leaders bring a holistic perspective about patient quality of life, including social, psychological, spiritual, and physical domains (Ferrell et al. 1995). Building upon these assets, increasing numbers of nurses are leading palliative programs and initiatives across geographic and care settings, and patient populations.

Nurses who participated in the focus group exemplified the current environment, leading palliative initiatives including clinical care, education, research, policy, and administration. They held positions in hospice house development, palliative care insurance coverage, as well as initiating and leading palliative care in outpatient clinics, home programs, and community and urban hospitals.

It was noted that while nursing leadership is possible anywhere, there are more opportunities outside the academic medical center due to its inherently hierarchical structure. Nurses in the focus group also represented varying educational preparation and licensure (e.g., registered nurses, advanced practice registered nurses, nurses with master’s degrees in administration, and doctorate of nursing).

The foundation of nursing, and the principles of palliative care are synergistic, which makes nurses who lead palliative care programs a ‘natural fit’. Per the American Nurses Association, the definition of nursing is “to protect, promote and optimize health; prevent illness and injury; alleviate suffering”, which aligns with palliative nursing as “a holistic philosophy of care for patients with serious and life threatening illness in diverse health settings across the life span” (American Nurses Association & Hospice and Palliative Nurses Association, 2014). This is fulfilled by the “assessment, diagnosis, and treatment of human responses to actual or potentially life-limiting illness within the dynamic caring relationship with the patient and family, in order to relieve or reduce suffering and optimize health (wholeness, integrity of the person, quality of life, and function)” (Lynch M, Dahlin C, Hultman T, & Coakley E, 2011).

In the past, the emphasis of nursing leadership was on a mechanistic, scientific management perspective, focused on an employer-employee model driven by rules, regulations, policies, and procedures (Dahlin & Coyne, 2019).

More recent nursing leadership models embrace the organic nature of complex adaptive systems. While this shift reflects the complex and local realities of health care delivery, it also means there is no cookie-cutter definition of leadership. And some people are left thinking, "I've been asked to lead. Now what?". Members of the focus group shared various challenges in role delineation including:

• Leveraging nursing expertise within the leadership role
• Maximizing leadership within nursing education and mid-career training
• Promoting understanding of nursing scope of practice within palliative care teams
• Balancing clinical and leadership responsibilities
• Promoting collaboration

Collaboration was a major theme discussed by focus group, specifically teamwork challenges when working with physicians and administrators. However, to be successful in integrating palliative care into the standard of practice of health care, there must be a culture of shared leadership in which ‘‘everyone has the right, responsibility, and the ability to be a leader’’ (Kotter 2013).

Despite a need for teams that are both ‘‘accountable to and for each other” and “who can speak and commit to each other,’’ by the nature of their training, physicians may be challenged by the concept of shared leadership (American Hospital Association and American Medical Association, 2015). In many situations, nurses are not given the authority to lead commensurate with their responsibility and skill as leaders, nor do they receive team and/or organizational acceptance into leadership roles (Kornacki 2016).

Another challenge reported by focus group participants is common for palliative care leaders across disciplines: a directive to start a program without any allocated time or adequate resources. Within academic settings, it is common practice for physicians and administrators to have dedicated administrative time to work on the business aspects of a program or initiative; nurses, however, may be expected to lead—in addition to full-time clinical duties—without allocated administrative time.

Focus group participants shared that there are varying degrees of leadership training, depending on nursing preparation, and that finding relevant resources is challenging—all outlined below.

• Associate and bachelor’s nursing programs have a focus on nursing theory and practice, with limited coursework on leadership.
• Within master’s or doctorate graduate education, there is an expectation that nurses will lead and be change agents, resulting in a heavier emphasis on leadership skill development.
• Nurses perceive limitations in their leadership capacity based on their educational preparation and licensure, which is a different—and not always useful—measure of leadership skills.
• Nursing leadership development courses often focus on management rather than leadership, and may not include the business and financing information that is necessary to run a palliative care program.
• Participants articulated a range of leadership knowledge that was missing from their clinical education. This included business principles such as understanding data and resources, using data to make a business case, and creating business plans and strategies. Also missing is training in change management, service line delivery, and project management within health care initiatives.
• Nurses reported the need for education in emerging financial terminology such as value-based care and alternative payment models. These topics are essential to a leader’s ability to successfully plan for palliative care program development and growth. The nurses felt hindered in making the case to administration for their palliative care initiatives including business and financial planning, clinical and staffing models, and measurement and marketing.

As the need for palliative care nurse leaders grows, nurses need mentoring, networking, knowledge and skill development, and guidance on career development.

There are few accessible and affordable options for the nurse program leader, and relevant continuing education opportunities for nurses often focus on management, rather than leadership. Many existing leadership articles or courses are not focused on palliative care and must be translated into the palliative care arena. That said, we've rounded up organizations and resources that do concentrate on palliative care.

• Professional nursing organizations that articulate nursing-specific leadership competencies include Hospice and Palliative Nurses Association (HPNA) and the American Organization of Nurse Executives (AONE).
• Organizations that provide leadership skills development for all palliative care program leaders — from any discipline — include the Center to Advance Palliative Care (CAPC), the National Hospice and Palliative Care Organization (NHPCO), and the American Academy of Hospice and Palliative Medicine (AAHPM). While it is a challenge to secure funding for professional development, it is imperative that nurse palliative care leaders make the case to their leadership that CAPC, HPNA, or other tools are prerequisites for an effective and sustainable palliative care program. (CAPC membership provides free continuing education credits for the entire staff of an organization.)

In response to the needs of new nurse leaders and the themes voiced by the focus group, CAPC is excited to announce the launch of the tutorial for Leadership Skills for Nurses.

Extremely useful for nurses early in their own leadership development, the tutorial is also helpful for all stages of nursing leadership development. It offers an introduction to the seven key themes of knowledge gaps identified by palliative care nurse leaders: Palliative Care Overview, Business Principles, Financing, Patient Populations, Teamwork, Palliative Care Service Principles, and Measuring and Assuring Quality.

Resources include CAPC's online technical assistance courses (with free continuing education credits), downloadable tools, and reference lists. The tutorial can be completed in whatever order and time frame best meets each learner’s needs.

• An In Depth Look at Palliative Care and Its Services
• Introduction to Palliative Care in the Community
• Building the Business Plan for Your Hospital Palliative Care Program
• Building the Business Plan for Community-Based Palliative Care
• Improving Team Performance
• Consult Etiquette: Communicating with Referring Providers
• Care Coordination
• Supporting the Family Caregiver: The Burden of Serious Illness
• Comprehensive Pain Assessment
• Relief of Suffering Across the Disease Trajectory:
• Chronic Obstructive Pulmonary Disease (COPD)
• Heart Failure (CHF)
• Communication Skills:
• Clarifying Goals of Care
• Advance Care Planning Conversations

• Customized Training
  • Palliative Care Leadership Centers TM (PCLCs), which are nine nationwide centers of excellence sites around the country that provide customized training and mentoring in the development of sustainable and effective palliative care programs, in both community and hospital settings
• Payment and Business Planning
  • Funding a Palliative Care Program toolkit, which includes the CAPC Payment Glossary and Payment Primer, as well as online continuing education courses on business planning, for both inpatient and community programs
• Team-Building
  • Building and Supporting Effective Palliative Care Teams toolkit, which includes quick tips for team effectiveness, support for hiring and onboarding, strategies for maximizing the health and wellness of the team, and more

• Products
  • Advancing Expert Care Position Statement - Palliative Nursing Leadership. Pittsburgh, PA: HPNA. 2014.
  • Dahlin C. The Hospice and Palliative APRN Professional Practice Guide. Pittsburgh, PA: HPNA. 2017.
• Programs
  • Leadership Development Program, grant-funded for a cohort of ten people for 2018-2020.