Executive Summary: A Better End of Life
Nancy is 87 years old, lives in Milwaukee, WI, and is dying of advanced stage cervical cancer. Her physician presents an aggressive treatment plan, but Nancy is not sure how she wants to proceed. She is overwhelmed and doesn’t know whether she should aggressively fight during what could be the last few months of her life, or if she should focus on spending her last few months comfortably. On top of that, she hasn’t discussed an advanced care plan with her physician or specified her goals and preferences for medical treatment in an advance directive.
If Nancy had lived in La Crosse, Wisconsin, she wouldn’t have been in this predicament. Approximately 96% of people who die in La Crosse have an advance directive outlining their wishes because Gundersen Lutheran Medical System sought to make discussing end-of-life wishes a comfortable conversation. Gundersen even works with medical providers within community churches in LaCrosse to better engage individuals in comprehensive end of life planning.
By changing when people start to express their health care preferences and how individuals and health care professionals treat conversations about care at the end of life, people are more likely to get the care they actually want if they cannot speak for themselves. Moreover, by simply increasing the likelihood that advance directives will exist and be accessible when and where needed, the federal government could save as much as $15.2 billion over 10 years.
This idea brief is one of a series of Third Way proposals that cuts waste in health care by removing obstacles to quality patient care. This approach directly improves the patient experience—when patients stay healthy, or get better quicker, they need less care. Our proposals come from innovative ideas pioneered by health care professionals and organizations, and show how to scale successful pilots from red and blue states. Together, they make cutting waste a policy agenda instead of a mere slogan.
What is Stopping Patients from Getting Quality Care?
Most older Americans want to die at home. Despite this, they usually die in a hospital or nursing home, with only 24% able to die in their homes. Why does this happen? Of course, circumstances can get in the way of a person’s goals and preferences for medical treatment, but, more often, doctors and patients have not discussed and documented what a particular patient wants if he or she cannot communicate. Thus, people end up receiving the default standard of care where doctors do everything possible to extend life—even when the treatment is often adverse to what individuals themselves desire. Without an advance directive (AD), an individual is more likely to receive unwanted, aggressive care, and physicians and family members are less likely to follow that person’s goals and preferences for medical treatment.
The ideal use of ADs is complicated, however, by behavioral traits—essentially cognitive biases—that affect a person’s decision-making. There are also numerous accessibility issues, ranging from portability across care settings to retrieval of the documents when needed by medical professionals.
Where are Innovations Happening?
Innovative efforts throughout the nation have increased awareness and use of ADs, while also making them more accessible in timely fashion. Successful examples include:
- State-based registries: Some states have created online registries where people can file their advance directives and physicians can access online databases. Louisiana created the first registry in 1991 and allows physicians and health care facilities to request access to a patient’s AD.
- Health information exchanges (HIEs): Across the United States, HIEs are also using technology and data transfer standards adopted worldwide to connect to improve accessibility of ADs. For example, the Chesapeake Regional Information System for our Patients, a regional HIE serving Maryland and the District of Columbia, is working with MyDirectives to improve the accessibility of high-quality advance care plans to physicians in the region.
- Phone Apps: The American Bar Association has released a smartphone application called “My Health Care Wishes” that allows patients to store their ADs or family members’ ADs and share them when necessary. MyDirectives has a mobile application for iPhones and iPads that lets consumers use video and audio recording, electronic signatures, and e-mail and texting to record and share their goals and preferences for medical treatment.
- Program integration in hospital systems: In La Crosse, Wisconsin, Gundersen Lutheran Health System has successfully expanded the use of advance medical directives through a community-wide advance care planning program called Respecting Choices. The program is integrated into Gundersen Lutheran’s routine primary care visits, as well as non-clinical, community settings via trained advanced care planning “facilitators,” and the advance directives are maintained in Gundersen Lutheran’s electronic medical records. The program has been enormously successful with 96% of patients had some form of advance care plan and treatment was consistent with the advance directives in 99% of the cases.
How Can We Bring Solutions to Scale?
Policymakers should ensure that every American knows they can express their goals and preferences for medical treatment, and that medical professionals and family members will have access to and respect their wishes if a patient cannot communicate.
Public policy should also provide increasing levels of support for promoting advance care planning for all Americans—not just those who are older, or frail, or chronically or terminally ill. This would start with normalized education and general encouragement for all adults, include comprehensive counseling for patients with advanced illness, and progress to more specific incentives for Medicare beneficiaries. This should happen in three ways:
- Combine existing programs with new technology to make high-quality advance directives available and accessible for all adults.
- Provide in-person counseling to patients with advanced illness and their families, when warranted.
- Encourage and incentivize Medicare beneficiaries to have comprehensive, digital advance care plans that include ADs, and make it easier for doctors to respect them with increased quality, portability, and accessibility
Savings to the Medicare program could accrue through adoption of policies that respect and enforce consumers’ choices with respect to the medical treatments they want (or do not want) to receive if they cannot communicate with their caregivers and physicians. When high-quality ADs are used in the Medicare population, it has been shown to reduce costs in high-spending regions. Based on a number of studies, Third Way estimates that these programs would decrease federal spending by $15.2 billion over the 2015-2024 federal budget window. It would decrease states’ Medicaid spending by $1.8 billion over 10 years.