The goal of a more effective and efficient system of care is straightforward—better care at lower costs. The path to that goal has proven far more elusive. To meet these aims, we must focus on those who really need the system to perform better—people with advanced illness and functional limitation. We must speak with them on their terms and build plans of care that appreciate them as people, not just as patients. Engaging individuals in decision-making about their life and health that upholds their dignity, independence and right to self determination is the keystone in the arch of a better system of care.

Unfortunately, when it comes to serving older Americans who face advanced illness, the acute-care oriented, cure-driven paradigm of our health care system fails to encompass the tools and skills necessary for spanning this arch. The way we talk to patients and their families must change. We must move beyond informed consent, the small print laundry list of medical procedure complications that patients must acknowledge via signature without really understanding benefits or risks, to informed discussions.

A structured, preference-based dialogue and subsequent planning is fundamental to helping people and their families make informed decisions so they can achieve desirable outcomes. For some, continuing to do everything medically possible to prolong life will be the path of choice for personal or religious reasons; these desires need to be fully respected and embraced, not merely accepted. However, for the majority of people with advanced illness, better care is not defined as simply more medical interventions. Rather, it is care that protects, preserves, defends and extends their personal goals and preferences—often with less medical intervention and more quality of life-driven support.

Models most likely to meaningfully improve quality of life and the efficiency of health care delivery are those that both coordinate care among providers and actively engage people in planning and decision-making based on their needs, values and preferences. We call this connection “Dignity-Driven Decision-Making”—which is the specific focus of The SCAN Foundation’s initiative to transform health care decision-making so that it explicitly includes quality of life, dignity and self determination as key outcomes for all and particularly for those with advanced illness.

Through this initiative, we seek to explore the full range of delivery models and structured approaches that build rigorous person and family involvement into decision-making centered on quality of life, not simply quality of health. An effective delivery model should have the following characteristics:

• Identify and serve a target population, specifically persons with advanced illness who have experienced a triggering event;
• Implement a structured approach to providing care;
• Charge providers to collaboratively develop and implement a care plan with the person/family, which is driven by the person’s needs, values and preferences;
• Create and/or facilitate active connections between medical and supportive service systems;
• Focus on community service delivery and not be solely dependent upon inpatient admissions or activities; and
• Generate better person-level outcomes and systems savings.

The good news is that a range of current programs already demonstrate many of these characteristics, such as comprehensive geriatric assessment, shared decision-making, palliative care and advance care planning. But even with enlightened providers who seek to overcome an acute-care focused medical model interested only in curative measures, the center of gravity for many of these efforts is still the provider rather than the person needing the service.

While some people with advanced illness will be fortunate enough to encounter one of these programs with enlightened providers, most will not. This must change. Dignity-Driven Decision-Making provides the opportunity to improve patient quality of life outcomes while reducing expensive health care interventions that may be unnecessary or even harmful. Dignity-Driven Decision-Making begins and ends with the seriously ill person’s quality of life as the basis for a better, more cost-effective delivery system.

___________

All postings to the Health Policy Forum (whether from employees or those outside the Institute) represent the views of the individual authors and/or organizations and do not necessarily represent the position, interests, strategy, or opinions of Altarum Institute. Altarum is a nonprofit, nonpartisan organization. No posting should be considered an endorsement by Altarum of individual candidates, political parties, opinions or policy positions.