Inspiring Improvement and Leading Change

in End-of-Life Care

Ben Lobo
Death is life's greatest change agent. After Steve Jobs
This chapter reflects on how leaders and great teams can and must rise to the challenge of improving health care systems and provide high-quality services to people who are dying. This challenge presents opportunities for leaders to achieve the “Triple Aim™” (Institute for Healthcare Improvement [IHI], 2012) of improved health of a population, improved experience of care, and a decreased cost per capita affordable cost.

This chapter describes how quality improvement (QI) techniques may also help to achieve wider aspects of improving access and equity to services in a timely and effective way. This approach to drive up quality and provide value will help us address the demographic change of people living longer and dying with long-term health conditions and social deprivation. In part, the key to address this need is to make proactive case management for individuals and advance care planning (ACP) the common approach and to have simple but standardized measurement and align financial incentives from the payer. To provide guidance to practitioners who want to advance the cause of best practice in ACP and end-of-life (EOL) care, I discuss the role of effective leaders and great teams in health care improvement, review key elements of QI initiatives applied to EOL care, point to key elements important to implementing large-scale change (LSC), and present the “Moral Test” put to health care planners by health care improvement leader Donald Berwick (Berwick, 2011).


Effective Leadership

I am privileged to share my personal experience of leadership as a corporate director and as a senior clinician dedicated to improving EOL care through ACP. Rising to the leadership and QI challenge in general has taught me much about people (myself as well as those I affected), the change process, and local and national politics. Leadership in austere times is tough, and my approach to survive and thrive is built on simple principles, no Ivy League MBA required. My leadership and QI learning journey has highlighted the importance of defining and communicating a simple and clear vision, and a realistic ambition with tangible stretch built into specific objectives.

Taking people with you is fundamental to positive change. It can only be achieved by sharing and understanding the common values and culture that make us human. I have learned how to use my behaviors to accentuate the positive and to get people to be hungry to acquire new knowledge and skills and be the architects of future services. It helps me to connect to people by explaining how I am, and most of us are, driven by vocation, and the fundamental and intense desire to do the best for patients and their families. I have learned to understand my own and other people's ideas, concerns and expectations, as well as in some circumstance real fears, and turn this into positive energy for front line change.

I recognize that because I, like other leaders, am under intense pressure to deliver on the bottom line with quality and cost improvements, I have to be careful not to unfairly push and exceed the team's ability to respond. Sustainable change is built upon a strong foundation, the team, the coalition, and the collaborative network. This is of paramount importance to teams dealing with high pressure and stressful roles in diagnosing (or acknowledging) for the first time a person is dying and needs support through ACP.

Mastering resilience and managing adversity are essential in maintaining growth and delivering on the bottom line in a time of organizational and system turmoil. Leaders of organizations must understand that to deliver success there must be synergy between frontline staff and the board members built by and maintained with openness and transparency. Every member, whether doctor, nurse, or assistant, must work at the top of his or her license. What does this mean in practice? I suggest it is about getting the basics right, being professional, using years of knowledge and experience to open conversations at the right time, understanding and sharing information with the patient and their families, and not being frightened to
tell some they are dying. A different approach is needed, away from hopes of cure and aggressive treatment and its concomitant harm.

The paraphrased quotation that opens this chapter is from Steve Jobs, the cofounder of Apple Inc. It has many both positive and potentially negative meanings, but to me, in the context of improving EOL care, getting quality right has been a foundation stone in my positive approach to my personal and professional life. There are no second chances and the moral stakes are high.

I learned the essence of medical ethics and morality as a child listening to the stories of my father, a pediatrician, and how he had the successes and challenges of looking after critically ill children. I have learned as a doctor that despite, and as a consequence of, medical advances, the greatest need now is to be good at controlling symptoms and offering a positive patient experience as people live longer and become frailer. Steve Jobs died in 2011 at the age of 56 of pancreatic cancer. Even this business leader and icon of the 21st century with the benefit of huge wealth, influence, and cutting edge medical treatment could not beat nature. He will be remembered not because of how he died but how he lived a life where he challenged traditional belief; pushed for perfection in the quality of his products; and achieved, as some believed, the impossible.

The question is not whether we will die, it is about how we will live.

Joan Borysenko

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