While the stigma and discomfort associated with discussions about death have diminished to some degree in recent years, it’s still a tough conversation for many to initiate. But having those difficult conversations sooner rather than later yields the preparedness, presence and peace of mind that make facing one’s mortality an easier reality for everyone.

In the past few years, but especially after COVID wrought havoc on so many lives, Ashley Johnson has noticed that people gradually started talking about death more willingly, openly and matter-of-factly than typical cultural attitudes previously encouraged them to.

That “dramatic” shift included perhaps the most difficult topics of all: discussing one’s own impending death or the looming death of a loved one.

“It is still today like pulling teeth sometimes,” she admits. ”But I can for sure say that I’ve witnessed a profound shift in how people perceive and engage with the end of life and end-of-life planning. You have more families and individuals who are recognizing the importance of having proactive conversations about their wishes. There’s a growing emphasis on holistic, person-centered care that honors dignity, autonomy and cultural values.”

Johnson is the president of the National End-of-Life Doula Alliance and an Orlando-based doula who considers herself a lifelong student in the practice of providing non-medical guidance, companionship and comfort to those facing death, as well as serving as their advocate as they make informed decisions about their end-of-life care plans.

She’s been supporting individuals as they near the active dying phase for about a decade. In that time, she’s seen over and over again how respecting individuals’ agency and dignity can help bring them a peace that not only allows for fully living in every moment but also diminishes the stigma that Western culture has attached to discussing, approaching or thinking too much about death.

“Several factors contribute to this shift,” Johnson begins. “There’s a rise of a death-positive movement that encourages open discussions about mortality that reduces the stigma. It fosters greater awareness about death, dying and grief. There’s increased visibility of hospice and palliative care services that help people understand the actual benefits of comfort-focused care. And I will say that the COVID-19 pandemic in particular illuminated the necessity of advanced care planning: There were so many families faced with difficult decisions under challenging circumstances, who wanted to honor someone’s wishes but never had that conversation because everyone wants to think they’ll die in their 80s or 90s so they’ll talk about it then.”

But chipping away at a societally ingrained stigma doesn’t happen overnight, and it’s still understandably difficult for many to face either their own or a loved one’s mortality. Sometimes initiating necessary conversation means softening terminology that may elicit an intensely emotional or resistant response, or it could mean reframing an overwhelming bigger picture with a definitive end as smaller, more manageable items to check off while one still has the autonomy and clarity of mind to tackle them.

“To avoid loaded terms, we talk about enhancing the time you have left,” says Beth Houk, director of the Orlando Senior Health Network division Vibrant Living at Home, which allows people to age in their homes while adapting to the care, planning and health care needs that evolve with time. “That’s really what this program is about: It alleviates worry about the future. Most people want to protect their assets while remaining independent and in their homes for as long as possible.”

Recognizing the person at the center of end-of-life planning is an imperative for those who are here to help an individual and their circle of loved ones approach tough topics and navigate the big emotions punctuating that journey. Each plan that takes a person from their terminal diagnosis to their transition into death is as unique as each life it touches.

“To me, the most sacred duty of a physician is to recognize the inherent value of human life and to respect their autonomy, to be aware of what cultural or religious aspects may be influencing their decisions, how they want to receive information, what they want to be told, how much they want to be told,” says Mary T. Busowski-Martin, MD, FACP, FAAHPM, HMDC, who’s part of the Orlando Health palliative and supportive care team.

While the logistics of ensuring your will is up to date and reflects both a trusted executor and exactly how you want your belongings and assets to be handled by others, drawing up a thorough and thoughtful end-of-life plan is about how you want to live out your days. That includes addressing the intangibles like physical and emotional comfort, medical interventions or lack thereof, spirituality, who is—or isn’t—welcome company, feeling anticipatory grief that often precedes the inevitable loss of terminal illness, and any celebrations of life that would surround an individual with their loved ones for one last happy memory together.

“When [my best friend] Dominique decided to stop her cancer treatments, she said she wanted an impromptu family reunion because she didn’t want the next time everyone saw her to be in her casket,” Johnson recalls. “Her family came to Florida from Jamaica, Canada, California and Philadelphia. There was tug-o’-war, water balloon fights, music, so much food—and what everyone got to experience was being happy and joyous with Dominique before she passed away a month later. She had a lot set up from hard conversations we already had, like the photos she wanted in her obituary, and this was one more way we made sure to honor her requests.”

While individualizing a plan is subject to each person’s unique wishes, Houk has noticed throughout her “long time in this industry” that a truly effective plan accounts for a trio of crucial considerations at its core, which tend to be crafted most comprehensively if an individual is ready to have some tough but necessary conversations about the care they want as early as possible.

“You should answer three questions: Who will take care of you should you ever need help, where will that care take place and how much will it cost,” she explains. “You’re eliminating certain options if you don’t explore what’s available and figure out what works for you when you’re in a position of strength. … It’s all about providing as many options as possible. I think if you’ve ever had to deal with a crisis situation and a loved one’s health care decisions, you know it’s so much easier if the person is willing to address them.”

Dr. Busowski-Martin points out that while palliative care—helping patients with serious though not necessarily terminal diagnoses both manage their symptoms and improve their quality of life—has long been popularly but incorrectly regarded as interchangeable with end-of-life hospice care, it is an area of medicine finally receiving the dedicated, nuanced professional development and recognition it deserves. That elevated and evolving regard for it means being of better assistance to individuals laying out the comfort-care aspect of their plan while simultaneously normalizing discussions around the topic.

“I think that we’re still catching up but that palliative medicine has moved forward,” she says. “Palliative medicine is now a required part of the internal medicine curriculum, so residents must spend time there. … I think this newer generation is seeing the value of palliative medicine instead of the stigma it had for being associated with hospice, the value in terms of patient completeness and being able to have the opportunity to do a life review and talk about what’s important for them to explore at the end of their life. We’re training a whole new generation of physicians to think of palliative medicine not as a failure or a handoff at the end, but as part of the continuum of care.”

For those either including or are more concerned with emotional care, there are myriad professionals available to assist accordingly. Those professionals know how to proactively proceed while prioritizing the dignity, sensitivity and humanity that everyone deserves, not just as they face end-of-life decisions.

“We’re part of an interdisciplinary team, so we’re not just looking at the physical suffering but the other forms of pain: spiritual pain, the existential pain, the loss and change that comes with illness or hospitalization,” Dr. Busowski-Martin says. “We rely on our chaplains, our social workers, our music therapists, our pet therapists, our psychology and counseling partners to help people live the best they can through whatever level of illness they’re experiencing.”

No matter how much the stigma erodes or how much support cocoons a person, accepting death is a hard reality to internalize more often than not. But having a well-thought-out plan for facing the end of life is a final kindness that many compassionate professionals are well-trained to extend to both an individual and those they love the most to ease a transition full of hard goodbyes.

“You have to acknowledge your feelings, whether it’s the discomfort of those dying and facing their own death or the loved ones who don’t want to let go—it’s so fundamental in honoring their humanity and the life they lived,” Johnson says. “When someone is actively dying, you don’t want that room to be filled with chaos, I want to move with intention so everyone is on the same page and understands what’s happening—you only get to die once, and it should be tender and peaceful. I focus on that sense of peace all throughout my time with someone so that person feels heard and honored and supported in their choices.”