The Order’s 2022 Good Death Fellow,Wake, is a nonprofit based in New Orleans that offers their local community information and resources for meaningful, affordable, and environmentally friendly deathcare. We talk to Liz Dunnebacke, Executive Director of Wake, to learn more about their work, the value and challenges of creating a community deathcare organization, and their Fellowship project, the Death Concierge program.
How was Wake founded and could you share a bit about its history?
I started Wake in 2020 after many years of interest in end-of-life issues. In 2012, I was working as a freelance producer of reality TV when my mother was diagnosed with late-stage terminal cancer. In the almost two years it took for her to die I was so overwhelmed with the process that it threatened to derail my life. Over the course of the next several years three other close family members died, and my experience with all of death’s attendant issues grew. These issues ranged from the most profound (how to memorialize your mother? What to do with her body?) to the most mundane (why is it so difficult to close down someone else’s cell phone account? Netflix? Credit card?) And the financial pressures were extremely difficult to navigate, even as a middle-class family. How would we pay the mortgage as we tried to clear out the grandparents’ home and sell it, all while living 2,000 miles away, and navigating a large, blended family with lots of competing interests?
During this time I constantly felt as though I were inventing a wheel that had likely already been invented. I knew that losing a loved one would be sad, but how could it also be so logistically challenging, if everyone has to deal with it? I wanted to create a resource to help people navigating these issues. I had worked extensively in nonprofit administration and I knew that I could create a small, grassroots nonprofit in my community that could provide direct service to families in need. We launched in June of 2020 in the middle of the pandemic, at which point my Dad suddenly fell ill and died that July. I was definitely walking the walk.
How does Wake put its mission into practice?
Wake has a number of programs that are meant to help connect folks to deathcare resources. These include our Death Concierge Program, Death Cafes and legal clinics, and ongoing education and outreach initiatives.
What are some of the barriers people in New Orleans are experiencing with end-of-life and funeral care?
By far the greatest barrier to meaningful deathcare across this country is financial, and New Orleans is no exception. The majority of our clients cannot afford the deathcare they are seeking. In-ground burial, which is a common choice of disposition in this predominantly Catholic and Baptist community, is becoming increasingly expensive in American cities, where land prices continue to increase dramatically.
Direct cremation has become the most prevalent method of disposition as it is the most affordable. But even this choice, with a price tag of well over $1,000, can be prohibitively expensive for families, and many clients are forced to surrender their loved one to the state’s indigent burial program, which takes over disposition in a potter’s field that is not open to the public. Indigent death is handled differently in each state, and even from region to region, across the U.S. Many coroner’s offices will return cremated remains to a family; not in New Orleans.
For those who are able to make arrangements it can take days or even weeks to crowdfund the money to pay for these, often leaving a loved one’s body long enough that the funeral home will require that any visitation, even just an identification, will require costly embalming.
Furthermore, New Orleans has a high rate of death as a result of gun violence; in 2022 it was the highest in the U.S. And deaths from overdose are also among the highest in the nation. Many families are losing loved ones in tragic circumstances, which further complicates an already difficult process. These deaths almost always result in an autopsy being indicated, which causes delays and makes visitation more expensive for families.
How does Wake work with their local community?
The Death Concierge Program is how we respond to community deathcare needs. Folks call Wake and let us know what they need, and we respond by providing direct services (often logistical/administrative) or connecting the family with relevant resources in the community, or both.
Because the vast majority of community needs tend to be financial, it is crucial that we be able to provide this service free of charge. People need to be able to pick up the phone and call us to get their questions answered. We operate a virtual hotline, where folks can call or email with questions or needs, and one of the staff or volunteers helps to connect each client with the resources they’re looking for.
During our first couple of years, the majority of the calls came from people who had just experienced a loved one’s death; mothers who had lost their sons, daughters who had lost their fathers, sisters, cousins, and sometimes neighbors or friends. All were reeling from the loss and overwhelmed with the tasks before them. There were living arrangements to see to, custody arrangements to contend with, but first, always, a body that needed respectful disposition.
Increasingly we are receiving calls from folks who are preparing for death. A client might have just received a scary diagnosis, or decided it was time to get their ducks in a row. Sometimes we’re doing basic Advance Planning paperwork, and sometimes we’re figuring out how to provide more comprehensive support (like giving rides and helping with tasks around the house) when someone is no longer ambulatory.
Our model is to have one full-time, paid, staff member who is the main point of contact for all clients, while services and support are delivered by a group of volunteers. We are working to formalize this group and standardize the services we offer, and we are pursuing options that will allow us to reimburse our deathcare providers for some portion of their labor, without having to pass that cost on to our clients.
Could you tell us about your Death Concierge program, and how it benefited from the Good Death Fellowship?
The Death Concierge Program is how we meet the community where they’re at in terms of need. From Day One we’ve operated a VOIP phone line that takes calls from anyone who is needing help. We listen to what those needs are and do our best to meet them.
We also listen to the needs and passions of deathcare workers in our community, and have established an ongoing, monthly Community Deathcare meeting at which we network and share information with local and regional providers about important resources at end of life. We work to develop and maintain relationships with social workers, grief counselors, and death doulas in our community, as well as with local funeral homes and hospice agencies. We are continually looking for gaps to fill, and for opportunities to partner with like-minded organizations and individuals to enhance the benefit for all involved.
Over time, we’ve developed some parameters around what we can and can’t provide, but we still get calls from some of our first clients when they’re struggling to connect with a service we don’t offer, and we do our best to help them.
We help families navigate purchasing funeral services, ensuring they can easily compare prices and put together the package they want and that they can afford. Some families want help setting up a crowdfunding website, or negotiating with the funeral home, the hospital morgue, or the Coroner’s office, for more time to come up with funds. We support families’ memorialization of a loved one by helping draft obituaries or creating a funeral program as a keepsake. When we can’t cobble together the hefty fee for any method of disposition, we encourage families to still memorialize somehow, gathering in a home or a park, to share stories and distribute keepsakes.
The Good Death Fellowship provided critical funding to ramp up the Death Concierge Program during Wake’s second year of operation. Funding helped Wake to stabilize the program, define a scope of services, and create a workflow, including an intake process.
It was hugely legitimizing to receive this support from such a beloved and trusted institution. In addition to the funding’s critical role in sustaining our program, we also benefited from the recognition of being profiled as a Good Death Fellow. The Order of the Good Death also published a call for volunteers on Wake’s behalf, which has been significantly and positively impactful for our small organization.
What are the challenges you encounter running a community death care organization?
Funding is the greatest challenge to running a community deathcare organization, which is no surprise as it’s also the main barrier to accessing quality deathcare.
Furthermore, if a deathcare provider (a doula or any person providing non-medical support in dying) wants to earn a living wage providing this important care, then the burden falls to the dying person or their community to be able to pay for the care. This means that often only affluent families can afford to hire deathcare providers outside of whatever is available via their insurance benefits (hospice, palliative care, home health, etc.). An individual can choose to offer this care on a volunteer basis, but doing so can be unsustainable, financially and/or emotionally.
As a result, most families end up just muddling through their deathcare needs, cobbling together the care they depend on through an extended community of family and friends. As you might imagine, this has mixed results that often play out along socio-economic lines.
Another challenge is the restrictive legal landscape for end-of-life care. Deathcare is inordinately restricted, especially in Louisiana, requiring a licensed funeral director to handle many basic deathcare tasks such as transporting a body, holding a wake or memorial service with the body present, etc. By law, a body must be in the custody of a licensed funeral director from death until disposition, so a family must hire a licensed funeral director to chaperone any activity (bathing, wake, funeral, etc.) with their loved one. This can be prohibitively expensive for families.
If someone wanted to start a death care collective in their community what are some of the initial things they would need to do?
Do your due diligence to understand what resources already exist within the community and map these, to determine where the greatest gaps are. Start with where there is perceived need but, above all else, listen to your community. Survey care providers in your region and ask what they see as the greatest need. Be sure to speak to those dealing with end-of-life within the healthcare system, but also look at those dealing with death after it has occurred – which will primarily be those in the funeral industry. Look at your local laws, particularly at your state’s indigent death program, and how it may change from region to region throughout your state. What happens to someone in your area when a family can’t afford even the most affordable disposition? Understand how many people are “lost” to the indigent death program. Try to find these people’s communities. There’s almost always a family member or friend trying to see to that person’s needs, but they might not be able to raise the money, or they may not be able to get in touch. Try to meet your community right where it’s at in terms of need and be prepared to pivot as the needs change.
The Louisiana LGBTQ+ End of Life Guide is a comprehensive primer on end-of-life care in Louisiana with the explicit inclusion of issues relevant to the LGBTQIA+ community. The guide covers specific steps people can take to protect the inclusion and agency of chosen family (as opposed to or in addition to biological family) at end of life. Examples of topics the guide covers include a document called a Primary Right of Disposition, which assigns the right to make decisions about what happens to your body after death to a person of your choosing (rather than to legal next of kin), information about how to ensure the correct gender marker is used on a death certificate, and how to advocate for oneself in the hetero- and cis-normative healthcare and deathcare systems.
The response to the guide has been so positive and we’ve heard from many folks across the U.S. who are interested in seeing something similar for their state. We’re thrilled the Order of the Good Death will be working with Wake board member, Ezra Salter, to develop similar resources for other states.
Applications for our Good Death Fellowship will open again summer 2023.
Fellowships are open to thought leaders and community organizers within the death positive community that have a project intended to make death a more meaningful, sustainable, and equitable experience for all, including but not limited to education, community care, art, events, technology, and/or advocacy.
This grant provides funding to selected Fellows to launch or advance their existing work on a specific project in their area of expertise. In addition to funding they will receive expert support, access to resources, and connection to a community with a passion for changing the future of death care.