Delivering Higher System Performance

What do we need to change to deliver higher system performance to enable high-quality EOL care?

We are presented with a challenge of engaging with dying patients, families, and professionals to improve systems to identify and treat patients who will gain measureable and, hopefully, longer-lasting benefit. We also need to prevent harm, including not treating those who won't gain treatment benefit, but still deliver good care and allow a natural death. The system must reduce fears of discrimination and lack of patient safety by using transparent decision making and clinical audit to account for all outcomes as part of good governance.

The Conversation Project

This is a contemporaneous example of a wider public engagement strategy in the United States. It is an example of how important an awareness and information-sharing campaign can be in influencing other more specific LSC projects. The Conversation Project, launched in August 2012 by awardwinning U.S. journalist Ellen Goodman, seeks to encourage people to have conversations about their preferences for EOL care with people who are close to them. The Conversation Project was launched in collaboration with the IHI, which has also started an initiative called “Conversation Ready” to help health systems and providers gain the skills necessary to elicit
patients' and families' EOL preferences, document them, and carry them out. The consequences of this project might include more direct involvement with people/patients in the future planning and design of services that will be needed to meet these objectives. The majority of Americans still die in acute hospital care, sometimes receiving inappropriate, expensive, and potentially harmful treatments such as intensive care or chemotherapy fuelled by fear of litigation and payment systems. Readers are directed to the project website for further information: theconversationproject. org. For more about “Conversation Ready,” see Initiatives/ConversationProject/Pages/ConversationReady.aspx.

The Leadership Challenge

If ACP is considered a good and moral thing, how can we get it implemented on a large scale? Having considered many theories and reflected on experiences, the following summary on leadership challenges helps us to consider in this context of how we get started and lead change.

Kabcenell and Conway (2011) describe the key role that executives play in initiatives to honor preferences of patients with advanced illness. There are many programs in the United States that engage in and promote ACP from the early conversation to decisions in the last stages of life, including in sectors of high-cost and high-harm environments such as ICUs. What Kabcenell and Conway describe includes engaging the workforce in new programs of care and new ways of thinking. It is now the expectation certainly in the United Kingdom that clinical leaders in responsible roles in organizations should take charge, lead change, and be accountable. Analysis of the national NHS End-of-Life Care Programme initiatives demonstrates that key clinical leaders are identified and supported by academic, managerial, and administrative staff. Further reflection on these NHS programs unfortunately shows less strength in improvement science, LSC, business skills, or entrepreneurial spirit.

Six Leadership Actions From Kabcenell and Conway

1. Know Your Organization's Current Performance

“Understanding the realities of current practice in your organization concerning advanced illness is essential to charting a course forward. Do staff reliably elicit and respect patient preferences?”

2. Set Bold and Measurable Aims

“Governance and executive leadership should set a bold aim to always honor a patient's preferences at the end of life, providing no more care than desired and no less. Communicate this aim clearly to all staff mem
bers and explain why it is important, not only for patients and families but also for the organization.”

3. Prepare People for Success

“With the expectation set, leaders need to position their staff (including all physicians) to be knowledgeable, competent, and compassionate about the preferences of patients with advanced illness. Palliative care education should be tailored to match the different needs of various types of practitioners (e.g., primary care staff, oncology staff, ICU staff, etc.).”

4. Establish Systems to Support Effective Care Delivery

“Training, while important, is insufficient to support respectful practices 100% of the time. Patients, families, and staff need a system they can rely on to reinforce what has been learned.”

5. Create Measures and Accountability

“Establish specific measures for palliative care programs, and have your organization's leadership team and the board review the data for these measures periodically. While structure and process measures, such as 'access to a palliative care program,' and 'percentage of patients dying at home or in hospice' or 'number of palliative care consults,' are all important, leaders should also track and report patient and family experience outcome measures, including the number of times a patient's state preferences for EOL care are known and carried out correctly.”

6. Remove External Barriers

“Barriers to effective, respectful care for patients with advanced illness include reimbursement systems that don't cover hospice or palliative care and the absence of systems that enable clinicians to seamlessly address the palliative care needs of patients also receiving curative therapy. As health care executives experiment with provider–payment systems, and other reforms, they should seek to identify mechanisms that support advanced illness planning (ACP) and care delivery. Efforts to improve care transitions and continuity of care across settings can have a huge impact as long as the associated financial requirements are met and incentives are aligned” (pp. 74–76).

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