The Power of the Patient Story: Empathy, Trust and Comfort

How to talk about the meaningful moments in hospice & palliative care.

“Oh no. I can’t send my mom to hospice. She’s not ready to die.”

It’s a phrase, or a variation of it, that those in long-term care hear every day. When hospice is recommended for a patient by any provider, it is usually not well received by their loved ones. Even when a patient is struggling to breathe, in serious pain or spending most of their day sleeping or unresponsive, a hospice referral is a hard pill to swallow. It seems like giving up. A “death sentence.”

However, those who are intimately familiar with it know that the goal of hospice is something entirely different. Hospice provides much needed supplemental medical and psychosocial care to a person whose health is rapidly declining and support for their caregivers and loved ones. Ultimately, its all-encompassing services should provide the patient with proper pain and symptom management so that they live their last months, weeks or days to the fullest extent possible, pain-free and comfortable.

So why are so many people afraid of it?

Our Problem with Death

Death is an unpleasant subject. In fact, according to a 2017 survey done by Chapman University, more than 20% of people surveyed said they were “afraid or very afraid” of dying. Even if it isn’t something you’re aware of, our subconscious fear of death impacts our thoughts, feelings, behaviors and interactions with others.

Because of this, as a society, we don’t talk about death.

Death isn’t fodder for cocktail party conversation, it isn’t water cooler talk and it isn’t something we discuss around the dining room table at dinner. We shy away from people who have a loved one who has died, often fearful that we’ll say the wrong thing. We don’t even identify death when we have to discuss it, instead saying things like someone “has passed,” “is no longer with us” or “is in a better place.”

If more people talked about death, certainly, they might start to get more comfortable with it. However, given the current sentiments, there’s little likelihood of that happening. So, if there’s little discussion of death and what we want for the end of our lives, how will there ever be any room to educate people on the benefit of hospice?

The answer lies in something every hospice provider already has: stories.

The Art of the Story

As humans who know that our time on this earth is finite, there’s something that touches our hearts when we see someone who is able to fulfill one of their “bucket list” items before they die. Often, these wishes are simple: attending their child’s graduation, writing birthday cards for their children for the next 20 years, spending some time in their garden. The nurses, chaplains, social workers and other members of a patient’s hospice team know them intimately, and outside of providing day to day care, work diligently to make sure their wishes get granted before it is too late.

The incredible care and compassion that hospice professionals provide their patients often seems “status quo” to them. They’d never brag about sitting at a patient’s bedside for hours, singing to them and gently rubbing their backs to ease their fears. They’d never expect accolades for being at a patient’s family birthday party, unpaid, just so that the patient’s loved ones felt safe in case an emergency happened. Stories like this are happening in your organization every day, and if you’re not aware of them, and sharing them, you’re losing out on an opportunity to not only educate your community but also grow your business. There’s a fear that sharing these stories could compromise compliance, violate HIPAA or could appear as bragging, but there’s a way to do it that ensures good outcomes for all.

These stories are the key to educating the community on what hospice are is, and what it isn’t. With proper permission some stories could be shared with local news media or maybe even a patient who is hesitant to sign up for service. They could help a patient with a tough family dynamic fill out his or her advance directives or even solidify a managed care organization’s decision to partner with a hospice organization.

When more people understand what hospice is really about, when they know what is offered and they hear stories of how it has worked for other people, they can better manage their expectations. When they hear stories of what your staff has done for others, prospective patients, and their families, won’t think hospice is just about giving up and will be more willing to sign on when they’re first eligible. When they hear stories about other patients, they will be inspired to find out what they want to live for in their last months of life and how they can use their hospice team to make that happen.

Hospice providers have a very powerful tool in their toolkit: the story.  Every story can change the narrative of hospice; it’s all in how it is told.

Key Takeaways:

  • Every organization that provides hospice care has stories, and your frontline employees are often the ones who are aware of them.

  • With a proper release form signed, these stories can be shared with media and on social media to educate the public on what hospice care is.

  • Stories can be used not only for community education and awareness, but for employee recruitment and retention, patient referrals and partnerships with hospital systems and managed care organizations.

Let’s talk about how we can help you with hospice and other healthcare communications Just email us at lets_talk@pcipr.com.