Only 50% of Americans Report Having Had End-of-Life Conversation with a Family Member; Less than 30% Have Written Documents Outlining Wishes
WASHINGTON, D.C. [April 10, 2025] – With National Healthcare Decisions Day next Wednesday, April 16, 2025, the National Partnership for Healthcare and Hospice Innovation (NPHI) is marking the occasion by encouraging Americans to use the day as an opportunity to have conversations with family or loved ones about steps they have—or have not—taken regarding their advance care and end-of-life plans. To help with conversations and prepare individuals to have the most effective discussion with their loved ones about these difficult topics, NPHI is also releasing its Five Point Guide below to show everyday Americans on how to have advance care planning conversations.
Tom Koutsoumpas, CEO of NPHI and an aging and end-of-life expert who was a winner of last year’s Fierce 50 Award given to innovative leaders in the healthcare industry, says these conversations are “one of the most selfless acts you can do for your family.”
“There’s never a ‘perfect’ time to have these tough conversations and make decisions about your care, but those conversations are some of the most meaningful and selfless acts we can share with our loved ones,” said Tom Koutsoumpas, CEO of the National Partnership for Healthcare and Hospice Innovation (NPHI). “Too often, we avoid talking about aging, illness, or death because these topics feel heavy, stigmatized, and emotionally uncomfortable. Instead of having end-of-life conversations, we too often postpone them, waiting for another day, but starting this conversation with your loved ones is truly one of the greatest gifts we can give. It is a gift because in the end it offers our loved one’s clarity, peace of mind, and comfort by knowing our wishes.”
Koutsoumpas continued, “It’s not just a discussion for the elderly or those facing serious illness. Whether you’re in your 30s, 50s, or 70s, this is a conversation for everyone at every stage of life.”
In honor of National Healthcare Decisions Day, observed on April 16, 2025, NPHI is urging Americans to take the important step of talking with their loved ones about advance care preferences and end-of-life wishes. This day is set aside to help you take care of these potential situations ahead of time. It is a day for patients or healthcare recipients to communicate their preferences for the care they wish to receive, ensuring those wishes are respected and fulfilled by healthcare providers.
According to the results of a major national study conducted in September 2022 on behalf of NPHI looking at, “Views and Experiences of Aging and End-of-Life Care in the US,” nearly every American rates the aging of our country’s population as a significant issue facing our country, yet only 50% of Americans report having any type of conversation with a family member regarding their wishes for their end-of-life care and planning. Memorializing those planning wishes into any type of written documentation had been done by less than 30% of survey respondents.
To Empower Americans to Commit to These Conversations, NPHI has released the following “5- Point Guide: Helping Families Navigate Care Planning”
Starting the conversation is a crucial first step, and NPHI understands that it can be difficult to know where to begin or how to navigate what is often a complex and confusing topic. To ensure a person’s wishes are truly honored, it’s equally important to follow up the conversation with any necessary actions.
- Discuss Your Wishes Early and Often
The first step in this process is having an open discussion about your wishes. Whether it’s receiving care at home or seeking hospice services in the event of a life-limiting illness, ensure your loved ones understand your preferences. You don’t have to have all the answers right away, but beginning the conversation is key. Today, there are many tools and resources available to help individuals navigate the choices they may face as they age.
Here are just a few:
- Advance Care Planning: A Conversation Guide by National Institute on Aging
- Talking About What You Want by Planning My Way
- The Conversation Project by Institute for Healthcare Improvement (helping people share their wishes for the end of life)
- Identify Key People in Your Care Plan
Who are the individuals—whether family, friends, or medical professionals—who will help carry out your plan? It’s essential to have open conversations with them about your end-of-life care goals. 81% of Americans report never having a conversation with a healthcare provider about their wishes for end-of-life care.
Discuss the available options with specialists and ensure your wishes are clearly understood. Trusted family members or friends can serve as advocates, supporting you in making informed decisions or stepping in to make decisions on your behalf if needed—a role commonly referred to as medical power of attorney.
Here are some helpful guides to use:
- Choosing a Spokesperson Guide by Planning My Way
- Who to Contact in Case of Emergency by Planning My Way
- Put Your Goals and Wishes in Writing
Take the time to document your wishes and make them official – also referred to as developing advance directives. Write them down and keep them in a safe, easily accessible place.
66% of Americans reported not having their end-of-life care plan or wishes to be carried out down in written documentation. The primary reason people haven’t put their end-of-life wishes in writing is simple procrastination—many say they “just haven’t gotten around to it yet.”
Putting your plan in writing could include funeral arrangements, preferences for medical treatments, or even details like the music you’d like played during your memorial. The more specific you are, the easier it will be for your loved ones to honor your plan. Here are some helpful resources:
- Prepare™ for Your Care Resources (Follow the 5-steps and fill out an advance directive form)
- Guide Sheets by Planning My Way (to help with laying out your thoughts in writing)
- Talk to Your Primary Care Doctor & Health Care Professionals
Your primary care doctor plays a vital role in this process, offering guidance on the full range of care options and helping you navigate difficult decisions. Despite their importance, only 1 in 5 Americans have had this critical conversation with their doctor. This gap in communication can leave families unprepared and decision-making in crisis moments more difficult. Taking the time to discuss your goals and preferences now ensures they can support you in making your wishes a reality:
- Your Guide for Talking with Your Health Care Team by The Conversation Project
- Find a Trusted Provider for Serious Illness Care
In the event that you or a loved one faces a serious illness, it’s crucial to have access to providers who specialize in care that honors comfort, dignity, wishes, and personal goals. Hospice care providers are experts in delivering holistic care, ensuring comfort, and respecting patients’ final wishes. Use tools like the NPHI provider locator to find a trusted provider in your area who aligns with your values.
Consider choosing a nonprofit provider for your care. Nonprofit hospices are consistently recognized for their commitment to quality care, focusing on putting patients and families first. A recent study in the Journal of the American Medical Association (JAMA) found that nonprofit providers, along with other non-private equity organizations, deliver higher-quality care compared to hospices owned by private equity firms or publicly traded companies. Nonprofits prioritize compassionate, patient-centered care over profits—ensuring your comfort, dignity, and wishes always come first.
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