By Kim Callinan and Kimberly Taccini
The United States is facing an end-of-life crisis. Our health system ignores people’s values and priorities, and prescribes treatments that rob people of the quality of life they want and deserve. While the overwhelming majority of people say they want to die at home, the reality is that nearly two-thirds of people who are at the end of life die in institutional settings, according to Teno et al. in a 2013 JAMA article. The authors observe that death is increasingly preceded by hospitalization in the ICU—a scenario many consider an escalation of aggressive care.
At least one study indicates that building a hospital-based palliative care program has no significant effect on a hospital’s ICU or hospice patterns. Advance directives go into effect only when patients can no longer speak for themselves; and even then, they are often not followed, according to Hart et al. in a 2015 JAMA article.
Most people would choose improved quality of life over interventions that could prolong life but reduce its quality, according to a 2015 poll by the Cambia Health Foundation. Without clear information about options and outcomes, however, millions of Americans submit to end-of-life care that inflicts needless suffering—even after such care no longer provides a path back to health. But few people know the facts, and the average person is confident they will remain in control at the end of life, according to our 2014 survey. Americans cannot wait for the medical system to stumble through incremental change: the time for change is now.
Consumer-Driven Action Guided by Research and Experience
Over the past 35 years, Compassion & Choices has led the consumer movement to expand end-of-life care, minimize suffering and maximize quality of life. We pioneered the first end-of-life consultancy program, transformed advance directives from legal documents to values-based contracts to communicate each individual’s end-of-life care priorities and litigated the case that established palliative sedation as a constitutionally protected medical practice. We, along with affiliated organizations, also have inspired and led the authorization of medical aid in dying in six states (California, Colorado, Montana, Oregon, Washington and Vermont) and the District of Columbia.
Compassion & Choices is taking the principles behind medical aid in dying—empowerment and self-determination—and moving them into end-of-life care so people with life-threatening illnesses can realize their values before they are at the end of life, when there is still time to advocate for and receive care that aligns with their priorities.
We invested two years in learning how to ignite a social movement that will empower consumers to make their voices heard—and make informed choices about treatment so they can live their remaining time on their own terms. We held 165 individual, paired or small-group interviews with patients having chronic or advanced illness, and family caregivers and healthcare providers. We conducted a national online survey with 3,520 Americans ages 18 and older, and a second survey with 1,997 adults ages 50 and older. We completed a literature review of academic, medical, cultural and consumer research, and we initiated product-concept testing.
Our research shows that it is not enough to encourage doctors and patients to have the conversation about dying, but to change the conversation. People do not want to talk about what will happen to them “later,” when they can no longer speak for themselves. People do want to talk about the care they receive now to ensure their healthcare aligns with their values and priorities when confronted with a life-threatening illness. People do not want to plan for their death; instead, they want to plan for how they will live the rest of their life. Changing how and when patients ask questions affects decision-making about treatment and increases the likelihood they can choose an end-of-life path in line with their values.
Initiatives and Tools for Patient Empowerment
Compassion & Choices recently rolled out its newest initiative, Truth in Treatment, to give older adults with life-threatening illnesses the permission, opportunity and courage to live life to the fullest as illnesses advance. We are providing patients with tools to help them work with their doctors to make treatment decisions that allow them to remain in control of their healthcare when they are at their most vulnerable.
In 2016, Compassion & Choices released the Trust Card—an online tool designed to build trusting doctor-patient relationships. Patients with advanced illnesses can use the Trust Card to convey their values to their doctor in a respectful and friendly manner, by answering a few questions online and creating a greeting card that builds a foundation for honest conversations about treatment.
This spring, Compassion & Choices released a second online tool, the Diagnosis Decoder, which supplies patients with better questions for their physicians so they can receive clearer information to make fully informed treatment decisions that align with their values and priorities. According to a study in JAMA Oncology, one of the ways people with advanced cancer can improve communication with their doctors is by asking the right questions.
We all know we must someday die. More and more research demonstrates that people are needlessly suffering at the end of life; this finding led us to tackle the problem and arrive at this much needed solution. Compassion & Choices’ mission is to improve care and expand choice for the end of life. Our goal for Truth in Treatment is to better the lives of millions of Americans who deserve peace and comfort at the end of their life’s journey.
Editor’s Note: This article appears in the July/August, 2017, issue of Aging Today, ASA’s bi-monthly newspaper covering issues in aging research, practice and policy nationwide. ASA members receive Aging Today as a member benefit; non-members may purchase subscriptions at our online store.