End of Life Doulas Matter

End of Life Doulas Matter

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You might have heard the word ‘doula’ and thought of a birth coach, as people often seek support to bring a new life into the world, but what about when we are preparing to die? The answer is doulas that are trained to help the dying, a profession that often scares and fascinates people simultaneously.

Death Doulas give different kind of services – anything from being a companion at a bedside, providing practical support for the family or aiding conversations with the person’s doctor, which will then help with making decisions about treatment. Some dying persons simply have a fear of death and need to talk and share with someone who is not afraid of discussing such issues. End of Life Doulas report that these relationships can last months, or even years.

The demand for death doulas is currently on the rise because more people prefer to die at home, at their own terms. Also, the growing number of terminally ill people with life threatening illnesses facing the end of life alone, without significant support from family or friends contributed to the demand.

End of life services are designed to help people plan for or manage their own or their loved ones’ end of life. End of life doulas are usually caregivers with extended knowledge and skills that support persons approaching the end of life and help them put together comprehensive plans for their own deaths.

Today, dying persons and their family members wish more than ever to be involved in the end of life process and through advanced planning they specify medical treatments they wish to receive, organize their medical or legal affairs, create rituals, complete final wishes and in many terminally ill cases, choose and plan the method of their death. End of Life Doulas help make the actual dying process as comfortable and efficient as possible for dying persons and their families, as many people find it emotionally hard dealing with these kind of arrangements.

An End of life Doula provides support and care for those who are dying. It is a person who accompanies an individual on their final journey. It’s not like hospice since there’s no administration of medication. An end of life doula is only there to soothe the passage from the known world into whatever an individual believes awaits them. Many organizations have created end of life doula training workshops and classes to embody what they believe would enable the aspiring doula to be most effective in assisting those who have lived a long journey and ready to rest in peace.

In the same way as mothers to be are encouraged to make a birth plan, it is also helpful for the person approaching the time of their death to make a plan to help them feel more in control, to provide a framework for making important choices, and to help give them the courage needed to ask for what they want in an environment where they might otherwise feel out of control.

This point of transition both in and out of life is often attended by much vulnerability; it is frequently surrounded by fear of the unknown and calls for a state of focused preparation. Doulagivers know how to hold the space for the person in transition, know how to encourage the process of letting go, of easing transitions with both gentleness and grace.

How I learned to live forever

How I learned to live forever

Say goodbye to having to die.
Say goodbye to having to die.

When my grandmother passed away this year, I was devastated. She may have been in her late 80s, but her sunny personality and boundless energy made it seem like she’d would probably just live forever.

My grandma was what you’d call a “silver surfer.” From the moment she inherited her daughter’s old laptop, she embraced the internet like a digital native. It wasn’t long before we were helping her set up a Facebook profile which she used to happily spend hours sharing cute animals videos and writing us sweet messages ALWAYS WRITTEN ENTIRELY IN CAPS. I gave up explaining to her that this amounted to constant shouting. She liked it that way.

A few months after she’d passed away, I was a bit shocked to see her picture pop up in my notifications, reminding me that it was her birthday. I hadn’t forgotten, but it saddened me to imagine other family members whose grief was still very raw receiving similar messages. I had thought—perhaps naively—that since Facebook knew enough about my life and habits to bombard me with targeted advertisements it would also know my grandmother was no longer with us. But the bots didn’t have a clue.

I looked up the procedure to report a death to Facebook, and requested that her account be “memorialized.” This means that nobody can log in to the account again, but her posts remain visible to the people they were originally shared with, and friends and family can continue to share memories on her timeline. I wanted to digitally preserve the memory of my grandmother.

After making my request I almost immediately received a response from someone in Facebook’s community operations team asking me to send them her death certificate. Their response struck me as strange and insensitive—like I was making it up for some reason. Since I didn’t have that document (my grandmother lived in Brazil and I didn’t handle the funeral arrangements), I argued that they should be able to verify her passing through the evidence available on their own platform. Facebook eventually agreed, but I can’t say it was a particularly pleasant process.

Technology is currently challenging our conceptualization of what it means to live—and die.“The tech industry is not really up on death,” says Stacey Pitsillides, a design lecturer at the University of Greenwich who is a PhD candidate in the field of data contextualization in digital death. Since starting her research several years ago, Pitsillides says she’s witnessed a remarkable shift: People are becoming increasingly eager to immortalize personal experiences online, just as I had felt after my grandmother’s passing.

This observation prompted her to set up Love After Death, a panel showcased at FutureFest in London to help people explore how technology is becoming integrated into new forms of creative expressions around death and dying. I met Pitsillides at FutureFest, a festival of ideas sponsored by innovation charity NESTA, to discuss the concept of digital legacies.

Technology is currently challenging our conceptualization of what it means to live—and die. Pitsillides believes that technology and design will play an increasingly important role in the process of morning, which she calls “creative bereavement.” “By creating a bespoke legacy agreement, it merges the concept of a design agency with funeral director,” she said.

To illustrate this, Pitsillides started by taking me through a questionnaire that asked me things ranging from the practical (which loved ones should be informed of my death, and would I like to setup a database of music, art, or poetry to be used at my funeral?) to the weird and outlandish (would my friends like to do an online vigil through live webcasting where I could be present via hologram, and how about having a memorial implant or tattoo?)

But wait—holograms? Memorial implants? Was this for real?

In the future, yes.

Death by Design

“You could have a surface-level or below-skin digital tattoo that could be matched to that of a loved one,” Pitsillides explained. Using simple technologies, you could add content to these digital mementos throughout your life and then have them activated after your death. This activation could either be triggered by the executor of your will—over 19 US states have already put forward laws to recognize the deceased’s digital legacy as part of their estate—or we could evolve AI systems to recognize cues when this should happen. At that point, certain content could become available to the people you’d predetermined, depending on the stipulations you left in your digital will.

It’s basically the futuristic, high-tech version of wearing half of your lover’s heart-shaped locket. These tattoos and implants could even be programmed to trigger only in the context of certain events. For example, when walking past the special spot where a now-passed husband proposed to his wife, his widow’s digital tattoo could change color or bloom into the pattern of her favorite flower, and “their” song could start playing on her phone. Or a father could still “be there” to deliver the speech at his daughter’s wedding via hologram, or greet the arrival of his first grandchild with a pre-recorded message.

An increasingly popular service is using 3D printing to create personalized mementos for your friends and family using human ashes.While these memorialization usages are still conceptual, the technology itself is already fairly mature. For example, we already have technology that allows for smart epidermal electronics to collect and record information about users, reacting to this data in a wide variety of programmable ways: Think of IoT devices like Dexcom that continuously monitor glucose levels for diabetes patients, allowing them to track their blood sugar via apps linked to wearables like the Apple Watch. Instead of being focused on what our minds and bodies are doing in the present moment, these tactile technologies could help us build and enhance connections with people both during life and after death.

As more people embrace the idea that death in the digital age is not just about looking back at the past, they will begin to realize that it’s just as much about the future. We’re already seeing people grapple with this concept in terms of what happens to our bodies after we die. Nowadays your ashes can be turned into building blocks for a coral reef or a beautiful fireworks display, but there’s a whole other after-world emerging courtesy of technology. For example, an increasingly popular service is using 3D printing to create personalized mementos for your friends and family using human ashes.

The Talking Dead

Since such a large percentage of our lives and interactions are now conducted online, we are constantly forced to reassess our meaning of self and identity. Is our online identity the most accurate reflection of our true selves? And, if so, can it “live” independently from our physical bodies?

The answer is potentially yes. The connections we build and share can—now quite literally—take on a life of their own. For example, websites like LifeNaut offer services that allow you to create a “mind file” that supposedly enables future scenarios around reanimation through “downloading” your memories to a robot or clone vessel of some sort. We might not yet be at the stage where robotics and AI enable the Black Mirror scenario where life-like replicants of loved ones can be created from their social media profiles. But it’s no exaggeration to say that, for better or for worse, our digital footprint already outlives our biological self.

“We are moving toward a society where the dead are not banished but remain present in our lives as sources of guidance, role models, and as an embodiment of particular values and life lessons,” Pitsillides said.

But is that what we really want? The ability to live forever through technology raises difficult questions such as whether it is our memories that make us who we are, whether our loved ones would accept this “new” version of us, and who should control consent to make these kinds of decisions after death. This kind of permanence may be appealing for some, but for others the possibility of a digital presence continuously and independently evolving is quite disturbing.

Most of us avoid thinking about our own mortality until it stares us in the face. As someone who spends most of my time online, I’m unsettled by this idea of not being in control of my online persona once I die—even if I wouldn’t be in a position to care, at that point. But having experienced the enduring joy that my grandmother’s Facebook memories have brought to our family, it makes me think that my digital legacy is something worth preserving. And now I have the first steps to know how to do just that.

You can follow Alice on Twitter at @AliceBonasio. We welcome your comments at ideas@qz.com.