WASHINGTON — As family members gather across the nation this holiday season, the National Partnership for Healthcare and Hospice Innovation (NPHI) and its CEO, recently recognized with a Fierce 50 Award for leadership and innovation in healthcare, are calling on Americans to use this time together to stop avoiding advanced care and end-of-life planning – a conversation NPHI calls “one of the most selfless actions you can do for your family.”
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 advanced care planning wishes into any type of written documentation had been done by less than 30% of survey respondents.
Tom Koutsoumpas, an aging and end-of-life expert who serves as the CEO of the National Partnership for Healthcare and Hospice Innovation, calls this the one conversation that is crucial for families to have yet is most likely to be avoided. Koutsoumpas is asking American families this holiday season to view the talk a different way and in line with the holiday season, he says, “it is one of the most selfless acts a person can do on behalf of their loved ones.”
“As Americans gather around dinner tables and take a few moments of time out of their busy lives to be purposeful and connect with family and loved ones, the holidays offer a perfect opportunity to talk about one of the most selfless acts you can do for your family: advance care planning,” said Tom Koutsoumpas, CEO of the National Partnership for Healthcare and Hospice Innovation (NPHI). “No one wants to talk about aging, illness, or death because these topics carry a heavy stigma and are often pushed aside or postponed ‘for another day’ simply because they’re uncomfortable and difficult to discuss. Yet, we should embrace this conversation with our loved ones because planning ahead is truly one of the most precious and heartfelt gifts, we can give our loved ones by leaving them with clarity and peace of mind. This isn’t just a conversation for the elderly or the seriously ill; whether you’re in your 30s, 50s, or 60s, it’s a conversation for all of us, at every stage of life.”
To help Americans feel empowered to hold these conversations this holiday season, NPHI has released the following: “5- Point Guide: Have a Conversation About Care Planning”
Starting the conversation is an important first step and NPHI recognizes it can be difficult to know where to begin or have the relevant resources to speak about what is often a complex and confusing topic for many individuals. To ensure a person’s wishes are truly honored, it’s also important the conversation is following by any action items needed to be completed.
- Discuss Your Wishes Early and Often
The first step in this process is to have an open discussion about your wishes. Whether it’s aging in place, receiving care at home, or seeking hospice services in the event of a life-limiting illness, make sure your loved ones understand your preferences. You don’t have to have all the answers right away but begin the conversation. There are now many tools and resources available to help individuals navigate the choices they might 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 Wishes in Writing
When you return home from the holidays, 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 for not having their end-of-life wishes in writing was due to procrastination selecting, “they just haven’t gotten around to it yet.”
This could include funeral arrangements, your preferences for medical treatments, and even what music you want played during your memorial. The more specific you are, the easier it will be for your loved ones to follow 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) this month 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 come first.