A magical place for living, and dying
Inside the Lily House on Cape Cod, residents say the hospice experience is like "staying at a five-star hotel."
This week, I'm in Italy celebrating a dear friend’s wedding, and it felt like the perfect moment to revisit one of our most-loved stories. I hope you enjoy reading it as much as I loved writing it.
Most of us have a certain image in our mind of what hospice is: a sad, sterile place where people go to die. We probably don’t think of altars, candles, windows looking out onto gardens, and beautiful art on the walls—and we definitely don’t imagine laughter and celebration.
But this is just what awaits residents of the Lily House–a social model hospice home on the far end of the Cape Cod peninsula in coastal Massachusetts. At the Lily House, hospice doesn’t signify giving up or surrendering to the inevitability of death—as most people think of hospice—but instead, a chance to thrive up until their final moment.
In a previous newsletter, we discussed the concept of “dying well”: the counterintuitive, perhaps even radical, idea that we can experience a sense of well-being during the experience of dying. In my career as a death doula, caregiver, and hospice director, I’ve been honored to directly experience what that actually means. I’m excited to share that with you through my recent conversation with Dawn Walsh, Executive Director and co-founder of the Lily House, and a dear friend and mentor of mine. In 2023, Dawn hired me as the Director of Operations for the Lily House, where I experienced firsthand what goes into building a hospice from the ground up.
Lily House is a magical place, and I’m honored to share the incredible story of what makes it so unique and how it was brought to life.
For Dawn (then a hospice volunteer), the House began with her observation of a huge problem: the massive care gap between those who had the resources to die at home surrounded by loved ones—a 24/7 caregiving support system and/or financial support to hire professional care—and those who did not. Those without the resources to stay in their own home were dying in hospitals, nursing homes, or other long-term care facilities, often alone, surrounded by bright lights and loud noises, and without the dignity and freedom to live as fully as possible until the time of death.
Out of the desire for a compassionate alternative, the Lily House was born. Dawn and her partners’ vision was clear: “a community home for living and dying” where terminally ill individuals could experience end-of-life with dignity, comfort, and grace, regardless of their financial means.
Soon after, a serendipitous event turned the vision into reality. When Sandra “Sandy” Wonders—a vibrant and beloved Wellfleet resident who had spent her life as a nursing home volunteer and community gardener—heard of Walsh’s vision, she made it her dying wish to donate her charming coastal home to be transformed into the Lily House. She’d seen too many people die alone in long-term care facilities and felt passionate about ensuring that others had the support to die at home, as she herself planned to. Sandy asked Dawn to be her death doula–guiding her through the social, emotional, and logistical process of dying–and the two met weekly until Sandy died peacefully at home in March of 2021, surrounded by loved ones.
After extensive renovations, the Lily House officially opened its doors in October 2023, becoming the first social model hospice home in Massachusetts.
On a recent trip back to Cape Cod, I caught up with Dawn over coffee to discuss the Lily House's journey and its profound impact on the community.
Let’s start from the beginning: We share similar experiences of losing our mothers during a formative time in our lives. How did that experience influence your path to becoming a death doula and opening the Lily House?
My mom died in my late twenties, and the circumstances of her death were such that I didn't get to see her after her death. That definitely informed my passion and interest, specifically in the after-deathcare work at the end of life. There's a healing element for me when I'm able to love and care for someone after death. It's a way for me to honor, love, and care for my mom.
Many years later, I was inspired by my experience with the death of a friend named Linda, who left very detailed instructions for her care after death: she wanted her friends to honor her by preparing her body, dressing, and shrouding her. And she wanted a green burial, with her grave hand-dug. At the time, I didn't know that we could do any of that. Death has become so medicalized we rarely have an opportunity in our culture to have experiences with people after death. So when you have one like I did, you see that there's really nothing to be afraid of.
Through that experience, I learned that I was very comfortable [being] with someone after death. I just walked right up to her and started brushing her hair and talking with her, and I was very aware of how comfortable I was at that moment. I felt like I had been doing after-death care work my whole life. It felt that familiar.
Lily House is a social model of hospice. For those unfamiliar, can you explain how a social model home differs from a medical model of hospice?
In many ways, the social model of hospice care we provide at the Lily House is a return to the original grassroots community-centered end-of-life care that Dame Cicely Sanders created in the 1960s. The term hospice shares language roots with hospitality–providing respite, care, comfort, and hospitality to somebody on a journey. That's where this concept of hospice comes from.
Hospice became a Medicare-funded benefit in the early ‘80s, and in the decades since then, it has grown into a very large, primarily for-profit entity, with the main limitation being that it's not a 24-hour benefit. The care is still delivered by the hospice team, which consists of individual members who are extraordinary human beings (the nurse, social worker, home health aid, chaplain, bereavement specialist, etc.), but they come in and out for only a few hours a day, and then someone else has to step in to provide care the rest of the time. That’s where the social model and the Lily House come in.
At the Lily House, we're partnering with the medical hospice agencies to continue to get that medical oversight, but we are providing the physical home and care akin to that provided by a family member. We have the benefit of being able to utilize the entire medical hospice team, and we supplement/complement that with 24/7 comfort, care, and companionship. That looks like doing what a family caregiver would do in their own home: administering the medications, bedside care and companionship, feeding and changing, death education, and contemplation.
This notion of hospice as hospitality is intriguing. Where does it come from, and what does it look like at the Lily House?
It starts with the level of care we provide in the social model setting because we're not bogged down with the roles and responsibilities that the medical hospice care model has. The medical model has a lot of bureaucracy and administration and focuses on the bottom line, on the money.
We're engaging in this work on the human level—including payment. We're a non-profit, community-centered organization, and there is no mandatory fee to stay at the Lily House, which allows us to be focused on the real human experience of showing up for each other at the end of life.
One way hospitality comes to life at the Lily House is through pampering. We only serve two residents at a time in a truly home environment, so we can cook meals to order, go for walks outside on the beach, do hands-on therapeutic touch, play games, watch movies, create art, etc.
A recent resident, Canary, said, “I feel like I'm living in a five-star hotel, and I've never even been to a five-star hotel. I feel like I'm in heaven before being in heaven.”
We've had many residents say they feel like they're at a spa and feel like they're being catered to, because they are. Everyone deserves that experience at the end of life. All of us here at the Lily House (staff and volunteers) receive a great deal of joy from being able to cater to someone who's living with us, and we have a running joke about the Lily House as “the place you come to thrive.” People get such good care here, they actually start thriving and really living.
A common statistic I hear is: “80% of people want to die at home, yet only 20% do.” What do you think people should be aware of when they say they’d rather die at home than at a place like the Lily House?
The reality is that most people often don't realize until they're at an end-of-life scenario—whether it's their own or a loved one—how much work is involved in caring for someone at the end of life. It is physically, emotionally, mentally, psychologically, and spiritually taxing to provide 24/7 care for someone who's dying. You have to do the physical labor of turning, changing, bathing, toileting, feeding, and the mental labor of keeping track of meal prep and medications, which is very important at the end of life, particularly to make sure they're not in pain.
Even under the best of circumstances—say you are retired—that's still a lot of work. You're so focused on the care of your loved one that it's hard to even have the time and space to manage your own feelings of impending loss and to take care of your own healthcare needs. You can quickly burn out and become resentful. Then, considering that the family members are still often working full-time or have a spouse or children to manage, there's no way you could provide 24/7 care for someone at the end of life. It can be very stressful, even under the best of circumstances.
That's where the Lily House comes in, and the social model of hospice: to provide this beautiful home environment and support our residents to live as fully as possible until the time of death. Because we are a small home, we can provide agency, choice, and dignity every step of the way: eating wherever, whenever, having visitors at any time, day or night, not bound by any institutional rules or regulations.
When we have residents who do have friends or family nearby, it allows them to let go of all of the worries about the care and be able to just show up on this very human level to walk alongside their loved one during their dying process and have their own experience of loss with their loved one.
I’m biased, but I think the Lily House is a truly magical place—unlike any hospice I’ve ever seen. I’d love to die there. Can you share a bit about how it was designed?
We spent a year and a half building out the space for the Lilly House, and we had an interior design team of volunteers who were very intentional about the aesthetic that we created here: one of lightness, openness, color, peace, and calmness.
We paid particular attention to layered lighting, so you have bright overhead lights, bedside table lamps, and wall sconces when needed. Setting the tone through illumination is very important at the end of life—from how we wake a resident to switching lighting for changing or bathing, feeding, and sitting vigil.
During the renovations, I came across a survey from the Omega Home Network with people whose loved ones had died. One of the questions was: “In your experience, what affected the quality of the end-of-life experience?
The number one response was the actual physicality of the space, which stuck with me: Paying attention to keeping the house clean, beautiful, and open was going to be the number one factor in how our residents and their friends and family experience their time here.
And that has been absolutely 100 percent true.
One person came in, looked around, and said: “I don't know what I was expecting, but it wasn't this.”
Time and time again, when folks walk through the door, they're compelled to comment. They take three steps into the house, look around, and say, “Oh my gosh, it's so beautiful, it's so peaceful, it's so calm.” One person came in, looked around, and said: “I don't know what I was expecting, but it wasn't this.”
Whatever image people have in mind of a hospice, it's not this–a beautifully artistically appointed house. The care put into the Lily House is the level of care you would put into your own home. We've spared no expense, and the community has been very generous in gifting us with local arts, upholstery services, and furniture needs.
Speaking of intentionality…the Lily House is known for its thoughtful after-death care. Could you tell us more about this practice and what happens when someone dies at the Lily House?
When someone dies, we're enculturated to immediately call the medical staff or the funeral home, and then the body is whisked away. And oftentimes–unfortunately–if you're in a nursing home or a hospital or some large care center, they only give you an hour or two with the body because they need the bed for someone new–and it's at the expense of our humanity to do that.
At the Lily House, the number-one thing that we remind ourselves of is that death is not a medical emergency—it's a human experience, particularly if you have the fortune to have a dying process (which we're talking about here) vs. a tragic, immediate death. So, if you are entering into a natural dying process, absolutely nothing has to be done in a hurry. You don't have to call the funeral home and have the body whisked away. You can pause, take a breath, stay present for this experience of a final breath, and honor the sacredness of that moment.
The first person we call is any family member or family point person, and we invite them to come and help with the after-death care if they would like. If not, then our staff does that. We take our time and begin to honor the body through washing, changing clothes and bedding, putting lotion on, etc.
During the dying process, we pay special attention to the room. When the residents live with us, their room is their private space. However, when they start actively dying, we start tidying a bit more to create an altar and light candles in the room. The altars are unique for each person. For example, one resident wore the same red lipstick every day she was here, so we put her red lipstick on her altar.
It's only after we've entirely tended to the body and laid our resident in honor that we call the medical hospice nurse to come and record the death.
And anybody who does after-deathcare work knows that the deceased person tends to relax into their death, and smiles start to form. When you're at the end of life and you're still alive—and you're doing the very real work and labor of dying—there can be a certain amount of tension that's held in the face and the body, but after death, all of that tension is released, and the whole body relaxes, including all of the facial muscles. Then all of a sudden there's this beauty and lightness that emerges, like the person just had a million-dollar facial with diamond dust.
Another part of our after-deathcare is offering home funerals and community gatherings…
We also offer shrouding ceremonies and rituals. For example, after the home wake, but before we call the funeral home, we have really beautiful white linen and a lot of brightly colored fabrics (that you, Maura, donated to the Lily House!) that we cut strips of for sashes. We do very intentional shrouding— just think of it like swaddling a newborn. It’s another opportunity to give thanks and experience love and gratitude for our loved ones before we say the final goodbye to their physical form.
Doing this has many benefits, especially as a shared experience with community members. It's modeling what after-care can (and used to) look like when we do this together, and we're not afraid of it. We don't run away from it, but stay present for it.
When family members and friends are given the opportunity to have hands-on care for their loved ones after death, it's profound. They typically don't even know that they can do that. I have seen so many family members have their hearts burst open at that experience of shrouding a loved one, tying the sash themselves and carrying the body. It allows them to be so intimately close and connected after death. You can see how helpful that is for them in integrating the loss and being able to let go.
What has surprised you most about your work at the Lily House?
Now that we're open and helping people die—the experience of living and dying side by side is genuinely profound. People who do end-of-life work talk a lot about how the more open you are to your own mortality, the more it enhances your life. I knew that for a long time intellectually, but now I know that in my body. I know in a very lived, felt way, that it's true. You have more joy, appreciation, happiness, and gratitude for life the closer you come to experiences of death and mortality. This work brings a tremendous gift.
When we were crafting the language to describe what the Lily House would be, it was just words on a page: living as fully as possible until the time of death.
We’re actually living that. Sometimes, that looks like tears of sadness and hardship, discomfort, and impatience. But mostly, it has looked like fun. I'm genuinely gobsmacked by how much fun we have at the Lily House and how many spontaneous shared community meals we have (like a hot dog party!).
Any final words of wisdom?
We've been taught to be afraid of death and to pay other people a lot of money to take care of our loved ones after death, which robs us of such a human experience. Our work at the Lily House is social activism—reclaiming our human right to care for each other during and after death.
We have the power to revolutionize how we come together as a community to care for each other at the end of life.
This work is about being human and showing up for each other as human beings. And if anyone is in the least bit inspired to create a community home for end-of-life care in their community, I just want you to know you can do it. You can create something truly special for your community that has ripple effects for generations to come.
We have the power to revolutionize how we come together as a community to care for each other at the end of life.
Where can our readers learn more about and support the Lily House?
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This interview has been edited for length and clarity.
What a lovely writing - thank you for such a fantastic Sunday missive. -Terence
Beautiful, truly beautiful. This one of the most wonderful situations I have ever heard of. I’m inspired to look into it more. Love everything about it.