But I’ve noticed that it plays out differently depending on who is sitting across from me.

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One group I’m increasingly likely to encounter is neurodivergent careseekers. Specifically, autistic people who are themselves dying, as well as autistic family members, partners, or caregivers navigating someone else’s death.

Right now, most doula training doesn’t say much about autism or neurodivergence. That’s a gap worth closing, and soon.

At their core, autistic careseekers want the same things every dying or grieving person wants: to be treated with dignity. All of my clients need their wishes respected. They don’t appreciate being rushed through decisions and seek companions who will sit or walk with them during the hard parts.

An ethical doula model is non-medical, relationship-based, and person-centered. It’s actually well-suited to autistic clients, more so than a lot of conventional healthcare. This is because it’s built around asking what someone needs rather than assuming it.

That’s the common ground. Differences show up in how we deliver that support.

Divergent Needs

Autism is a spectrum, and that word matters - a lot. I’m not talking about “a little to a lot autistic” laid out on a single line. A spectrum refers to a wide, non-linear range of differences in how someone thinks, communicates, interacts socially, and processes sensory input.

Some autistic careseekers are highly verbal and want detailed, literal information. Others are nonverbal or minimally speaking and communicate through AAC devices, written text, or behavior.

I’ve had clients hypersensitive to touch, light, or sound. This can be especially tricky in a hospital or hospice room. A few engage in sensory-seeking behavior that looks unusual to an outside observer: jumping, spinning, or rocking. They play with textured toys, seek deep pressure through hugs, and listen to loud sounds for stimulation.

A one-in-three patients overlap between autism and intellectual disability, noted in guidance from UK-based end-of-life charity Marie Curie. This means some autistic careseekers need additional help with concepts like prognosis or decision-making that go well beyond communication style alone.

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These tips help me to be more mindful when I’m working with autistic clients:

Let go of expectations. My neurodivergent clients processing a terminal diagnosis, or grieving a loss, don’t display the facial expressions, tone of voice, or emotional pacing I’m trained to read. I often remind myself, and other professionals on the care team, that a flat affect doesn’t mean someone is unfeeling. Repetitive movements (called stimming), a need to talk about a special interest, or what looks like “changing the subject” means they’re working through grief, not avoiding it.

Words matter. Palliative and hospice care is full of euphemisms like “passed away,” “we’re just keeping her comfortable,” and “not much time left.” I’ve worked with autistic loved ones who process language literally. Our vague or metaphorical phrasing creates real confusion at a moment when they need transparency more than anything. For them, being direct and specific is the most respectful and least distressing way we can communicate.

Clarity, clarity, clarity. Uncertainty is already one of the hardest parts of the end-of-life experience. I’ve noticed that for many neurodivergent people, that’s a distinct source of distress on top of everything else. Where possible, let’s offer a clear sense of what’s going to happen rather than leaving those things open-ended. We know what’s coming, so let’s help autistic loved ones understand what’s coming, too.

Let awareness guide the work. I am mindful about bright lights, background noise, strong smells (flowers, cleaning products, perfume), and physical touch like hand-holding or hugs. When looking through the lens of neurodivergence rather than neurotypical, these can all be overwhelming rather than comforting. Asking about sensory preferences must be as standard as asking about pain levels.

Advance planning tools need adapting. Traditional living will and legacy-project prompts often encourage abstract, open-ended reflection (”What does a good death mean to you?”). I’ve noticed that autistic careseekers do better with structured formats and written options to choose from. Visual supports and extra processing time work better than being asked to generate an answer on the spot.

Autistic family members may be masking or undiagnosed. This is true for adult children or spouses coordinating end-of-life care. That makes it hard for a doula to notice they need specific support. Check in directly, rather than reading only their body language.

Bring Basic Strategies Into Our Work

To summarize…

• Ask, don’t assume: sensory needs, communication preferences, and comfort with touch vary enormously even within the same family.

• Offer information in spoken, written, or visual formats. This gives everyone time to process what’s happening.

• Use direct, concrete language about death, dying, and what to expect. No metaphors or idioms.

• Build predictable routines and give advance notice of changes (cue before you do) wherever possible.

• Recognize atypical grief expression (intense meltdowns, stimming, flatness) as valid grief rather than disengagement.

Loop in speech and language professionals or AAC specialists when you need communication support.

Why This Matters

This isn’t a niche consideration.

According to the CDC, in 2025, autism prevalence among 8-year-olds in the U.S. was 1 in 31. That’s up from 1 in 36 just two years earlier, and 1 in 150 when tracking began in 2000. Part of this is due to better diagnostic criteria and awareness, but the practical result is the same: more autistic children are growing into autistic adults, and more of them will, in time, need us. They’ll be the person dying or a grieving loved one holding a family together through loss.

Academic reviews of death doula work already note a broader demand for end-of-life services expected in the coming years as populations age; autistic adults are a growing share of who’ll be looking for that support.

Doula training programs, credentialing bodies, and individual practitioners – there’s an opportunity here. Let’s not treat autism as a specialty add-on. Instead, let’s build autism literacy into the baseline of what it means to do our work well.

The families are already showing up. The question is whether we’re ready for them.

Further Reading & Support

• What is an End-of-Life Doula?

• Death Doulas in Hospitals and Nursing Homes

• My Favorite End-of-Life Planning Guides

All of this is important. But what about emotional and psychological changes that are coming? Unfortunately, we don’t always think about these aspects of the experience and, as a result, experience discomfort of a different sort.

When all three – physical, emotional, and psychological distress – combine, it often leads to terminal agitation. Awful, yes, but I’d argue - mostly avoidable.

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Everybody is different. No two lives are the same, and no two deaths are the same either. Nonetheless, I’ve seen some commonalities in the dying process, including common feelings or emotions.

Not all of them, negative.

For example, dying people become understandably less interested in the outside world. They’ve got a lot going on inside themselves and sometimes withdraw from family and friends. Engaging in a “life review” is normal. During this important introspection, some careseekers want to be surrounded by very close loved ones. Others want to be completely alone.

They often spend their days contemplating everything, which means letting go and saying goodbye.

I’ve also seen many folks exhibit a unique awareness that confuses caregivers and visitors as death draws near. They talk to loved ones the rest of us can’t see or hear. Other times, they talk about a trip or “going away” somewhere.

A person close to death may have trouble remembering something that just occurred while remembering with great detail the events of long ago.

It’s not unusual for an impending death to bring periods of delirium. This can be the result of a drug’s side effects or changes in metabolism. Delirium looks different depending on the person but usually includes hallucinations or changes in consciousness. Medication helps ease these symptoms.

A Deep and Painful Agony

Terminal agitation is more extreme than the above examples and appears toward the very end of life. I’ve seen it most often show up as someone pulling or tugging at their bedsheets or clothes. They’re restless.

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Other symptoms include:

• Verbal outbursts

• Anger

• Hostility

• Pulling out medical tubes

• Indecisiveness

I’ve seen careseekers of different races, religions, and cultures experience terminal agitation. Some believe in a higher power; others do not. The one thing they had in common? Controlling personalities with notable anger and frustration.

The Root of It

By the time someone has this affliction, they’re usually unconscious or close to it. They can’t easily tell us what’s ailing them. I work with loved ones and experienced hospice nurses to try and figure it out so we can help them feel better.

Pain

It’s hard to be comfortable when we’re experiencing physical pain. This is especially true if someone postponed palliative or hospice care. Careseekers who choose hospice early on are better supported with medication and often avoid the physical suffering that leads to agitation.

I’ve also seen really great hospice nurses leaning close to a person’s face and asking simple yes-or-no questions, looking for changes in facial expressions to give us a clue. It could be that a catheter is needed or a sip of water.

Emotional Suffering

Sometimes my clients are angry about dying. This doesn’t just happen to the young. We can all feel like we’re leaving too soon - no matter our age.

While my clients are able, we make a list of what they’d like to do before they die. I help them prioritize and figure out a death plan for what’s reasonable. Therapists or psychologists also help ease suffering. They allow my clients to deal with unfinished business and the emotions that come along with it. That reduces the risk they’ll get agitated while actively dying.

Confusion

Those suffering from dementia especially get angry because they can’t cope with being so confused. A team with experience supporting patients with cognitive decline responds in ways that help dementia patients transition more peacefully and with less irritation.

Drugs and Side Effects

Some medicine that reduces anxiety also increases the risk of agitation. An experienced medical team will adjust medication as symptoms vary from person to person.

Organ Failure

When the liver and kidneys start to slow down, metabolism and chemistry alter our personality. Heart and lung failure also results in lower oxygen levels, and irritation follows.

Again, call hospice before it’s an emergency situation. Medical teams who are on call earlier get to know their patients, their medical history, and help alleviate terminal agitation by reducing symptoms of:

• Anemia

• Infections

• Fevers

• Urinary retention

• Constipation

Informed Caregivers Make a Difference

Understand that even though terminal agitation isn’t personal, there are things caregivers can do to make it less of an issue.

For example:

• Remember and apply the Ring Theory. You’re going to naturally feel sad, but it’s your role to “comfort in, dump out.”

• Find a solid support system to work through any troubles or emotional pain you’re experiencing as a result of providing care. Take time to process your feelings and care for yourself. This is how you better care for others.

• Stay calm when interacting with your dying loved one.

• Lower your voice, even if your loved one gets louder.

• Do not argue.

• Sit down rather than stand over the person. This will help lower their anxiety.

• Keep your body open and receptive. For example, uncross your arms and legs.

• Take breaks to meditate and breathe.

• Create a peaceful space.

• Make sure only positive people visit and hold vigil.

• Turn the lights down, play soft music, and limit the number of visitors.

• Ask if you may hold their hands and be okay sitting in silence.

• Check with the medical team frequently. Make sure they are doing everything in their power to ensure your loved one is comfortable. This includes asking about palliative sedation.

Preparation Makes a Difference

Before you start actively dying, build a supportive care team. Address emotional and spiritual needs before it’s too late. Talk with hospice teams to make sure they’ll support loved ones who request palliative sedation when you cannot.

This helps make the last few days easier for everyone involved.

Further Reading & Support

• Let’s Talk About Palliative Sedation

• Choose the Best Hospice in Your Area

• The Burden of Deathbed Rage

• My Checklist for the Dying

That’s usually because no one in the room has any real practice at this.

Death doulas serve exceptionally well in these rooms. We have had that practice. The real, repeated practice of sitting beside grief without fear or anxiety. Without rushing everyone through it. Without needing it to resolve.

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We’re more than merely a comfort. We’re an anchor.

Meeting The End More Than Once

Most people meet grief for the first time as adults. This is a moment where they’re unprepared, often in the worst week or day of their lives. A death doula meets grief for a living. We’ve sat at so many bedsides, held loved ones through the hours after a last breath, and walked alongside dozens of different timelines of mourning.

We understand that some mourn in waves, others go numb, and some grief shows up as anger instead of tears.

That repetition and practice builds a gentle kind of calm within us. We’re familiar with it. When a death doula sits with a family in loss, we aren’t guessing at what might help. We know, because we’ve watched grief move through similar spaces before.

This is the quiet reassurance death doulas offer a wider community, beyond the loved ones and care circles we’re directly serving. Our presence tells everyone that this is survivable. Mourners listen when we say, “You’re not doing it wrong.” Our stabilizing words come at just the right moment.

The Skill Underneath the Calm

Digesting grief well is a trained skill but involves a few specific capacities that anyone can adopt. This includes:

Being fully present with someone’s pain without absorbing it. That allows us to sit through sorrowful moments without falling apart.

Avoiding meaningless narrations. Instead of “she’s in a better place,” I might say, “this is the hardest thing you’ll go through, and I’m not going anywhere.” Grief must be witnessed accurately.

Reading actual needs. Some loved ones want silence. A few want a professional to handle logistics so they can fully process what’s happening. Others want stories and laughter at the bedside. We sense which response or technique is needed and adjust our energy without being asked.

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Holding uncertainty. Death rarely adheres to a schedule, and grief never follows a predictable pattern. Doulas are comfortable not knowing when or how someone will feel from one day to the next, and that comfort is contagious.

Ritual as a Container

One of the most concrete tools we bring to a community is ritual. It’s those structured, repeatable acts that give shape to our feelings. As a writer, I’m blown away by how direct actions speak so much louder than words. That’s because ritual doesn’t require us to know the perfect things to say. We need only to participate.

A few examples:

In the final days or hours, doulas sometimes gather loved ones for a simple bedside vigil: we lower the lights, play quiet music or none at all, and gently encourage each person to speak directly to the dying person, even if they’re unconscious.

Weeks or months before death, I might talk my client through recorded life reflections. We discuss what they want remembered, what they forgive, or what they’re proud of. The recording becomes a cherished possession their loved ones return to, a powerful bereavement tool in the weeks and months ahead.

Sometimes I open a window, ring a bell, or light a candle at the moment of passing. It’s a small, sensory marker that tells us “something sacred has occurred” when our minds are too overwhelmed to process it.

For religious taharah rituals or a more secular home funeral, doulas help lead a gentle, unhurried washing of the body after death. Rather than outsourcing entirely to strangers, this ancient practice, found across many cultures, turns caregiving into a final act of love.

In the weeks after a death, I’ll sometimes host informal gatherings where a chair is left empty for the person who died, and others share memories addressed to that chair. It gives grieving loved ones permission for that grief to be spoken aloud in community. They don’t have to carry it alone.

A year after a death, I’ve helped families begin a small annual practice. We plant something, cook a meal the person loved, or visit a specific place. Sometimes grief needs a scheduled acknowledgment where people know it’s coming ahead of time.

These rituals don’t erase our pain. That’s never my goal. Instead, they help give our grief both shape and meaning. A beginning and an end for that particular gathering, so that loved ones aren’t left feeling aimless or unprotected.

Steadying More Than Families

A death doula’s real service to a community isn’t limited to the individual family we’re hired to help. It’s our demonstration, repeated over and over across a community, of meeting death with steadiness and compassion. Every ritual we lead, every vigil we hold with calm attention, every family we walk with through the strange logistics of dying without judgment… these teach everyone that we survive heavy losses.

And we don’t have to do it alone.

That’s the cumulative gift of doing this work. Death isn’t easy. But a community of caring people, watching someone hold it well, learns they can hold it too.

Further Reading & Support

• What is an End-of-Life Doula?

On the surface, both terms seem similar. They’re both about death. But that’s where the resemblance ends. And since people have written to me with confusion about the two topics, I thought I’d go over the difference in my death-positive community here on Substack, confirming why we’re vehemently against the death cult mindset.

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Death positivity describes a movement rooted in honesty. Like my columns, it promotes preparation and agency in the face of mortality. Death cults, as I’ll argue, describe an inversion: the political posture in which death is weaponized.

A Distinction

“Death cult” has been used, historically, to describe a group whose leader directs followers to their actual deaths. But more recently, it’s hurled at political movements, regimes, or ideologies to say they glorify death and violence. This newer definition is used to convey a moral horror about what’s happening in many parts of the world.

So let’s talk about it.

Understanding the difference between death cults and death positivity matters to me, because conflating the two (or worse, mistaking one for the other) obscures two diametrically opposed movements. Besides, when political loyalty starts to override self-preservation and, even worse, the safety of others, the whole world suffers.

What Makes a Political Movement a Cult?

Members of a death cult exhibit an unusual willingness to accept policies with lethal consequences. This is because they prioritize loyalty to an autocratic leader above all else. Sound familiar?

During the COVID-19 pandemic, for example, misinformation about vaccines and public health measures was widespread within the MAGA movement. Mortality data showed Republican-leaning counties experiencing higher excess death rates than Democratic-leaning ones. I’d argue that this pattern extends beyond the pandemic to policy areas like healthcare access, gun regulation, and environmental protection. Opposition to intervention is framed as a matter of loyalty rather than a straightforward policy disagreement.

And the death cult members, while dying and suffering in outrageous numbers, keep going along with it.

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Necropolitics - a term coined by philosopher Achille Mbembe - describes how political power operates by deciding who is allowed to live and who is exposed to death. Authoritarian-leaning movements all over the world sustain themselves by designating certain groups (immigrants, racial minorities, LGBTQ+ people, the poor) as more expendable. This makes their suffering or death politically tolerable. For some of the more fanatical supporters, it’s even useful.

Compare and Contrast

Goals

Death Positive: Accept mortality, live better, plan wisely
Death Cults: Gain political power, often using marginalized communities as a scapegoat

Structure

Death Positive: Open, decentralized, anyone can join/leave
Death Cults: Closed, hierarchical, isolating members using fear

Power Dynamic

Death Positive: No central authority demanding obedience
Death Cults: Charismatic leader with near-total control

Relationship to Death

Death Positive: Talk about death to reduce fear
Death Cults: Move marginalized groups toward death

Outcomes

Death Positive: Better planning, less anxiety, informed choices
Death Cults: Destruction, murder, exploitation

Those who oppose death cults, like me, believe that any rhetoric dehumanizing marginalized groups also normalizes policies that disproportionately endanger those groups’ lives. That’s not what we’re about.

Death positivity, on display throughout my work, is the practical knowledge needed to directly navigate mortality, grief, and end-of-life decisions. It’s fundamentally about individuals reckoning with death’s inevitability in order to live more wisely. Through education and literacy, we’re oriented toward agency, informed consent, and care.

A “death cult” describes something closer to collective denial or instrumentalization of death: a dynamic where death becomes politically useful rather than something confronted honestly.

Think about current conditions of blockade, displacement, and civilian casualties in Gaza, Iran, and drone strikes/destruction of identity markers in Ukraine. Consider Mediterranean and U.S.-Mexico border deaths. What about cuts to public health, social services, and education spending in already underserved populations? Resource extraction, land grabs, and ecological degradation in postcolonial regions?

Where death literacy asks, “How do we prepare for and make peace with mortality?” the necropolitical critique asks, “Whose mortality gets treated as an acceptable cost of a proper world order?”

Moral Horror

None of this is to say that everyone who resists a given public health mandate or contests a particular policy is participating in a death cult. Reality is more nuanced and messier than that. I support a healthy distrust of institutions, economic precarity, or genuine policy disagreement. Besides, motive is hard to prove, and correlation in mortality data doesn’t settle questions of intent.

But the distinction I want to draw isn’t about individual motives; it’s about structure. Death literacy is oriented toward clear eyes and informed choice. Necropolitical dynamics are oriented toward obscuring whose deaths count and whose don’t, prioritizing loyalty to the supreme leader.

Learning to tell the two apart – both in ourselves and in the movements we belong to – is, in its own way, a valuable form of death literacy.

Further Reading & Support

• How Death Denial Leads to Tyranny

• The Grief Surrogate

• The Necessity of Harm Reduction

Over the years, I’ve developed a checklist for all three.

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1. Learn About the Illness or Disease

This is your experience, no one else’s. So get educated. Keep a notebook handy to write down every symptom and bring that with you to the doctor’s appointments. Bring another person, too. And use that notebook to write down what the doctor says.

Yes, it’s scary to ask about the trajectory of an illness. However, much of that fear of the unknown goes away when we know. It feels empowering. Take some time in the beginning to fully comprehend all the physical, mental and/or emotional changes to better prepare for them.

2. Practice Patience

We feel a variety of emotions responding to a new reality. Some days will be better than others, so I help clients put some plans in place for self-care. We contact a grief counselor, begin meditating or praying on a regular basis, or keep a journal. If my client is confined to a room, we bring in plants, pictures, candles or anything that might provide them with comfort. That helps careseekers feel better and their visitors respond well to the peaceful environment.

3. Determine Goals

One of the first questions I ask is, “What do you want to do with the rest of your life?” Some want to reach out and say, “I’m sorry,” “I love you,” or “I forgive you” to estranged loved ones. I’ve had clients get married to the love of their life before they die. One needed support to see their granddaughter’s graduation. We talk about what they want to do and see what goals are feasible and can be accomplished.

4. Choose a Location to Die

My clients and I consider their options for where they can comfortably die according to their own wishes. This might be at home, in a hospital or nursing home, or somewhere else entirely. The location is based on their condition and whether they want certain medical professionals on hand for whatever they might need. Now is the time to make sure it’s a viable option.

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What if a partner, child, or roommate doesn’t want them to die at home? Often, that comes from a place of fear. Usually, after a few sessions, they learn about what that really means and change their minds. But, if they still feel anxious about it, we can find another location. This is why we need to discuss this sooner, rather than later.

5. Consider Social Media

Put someone in charge of social media accounts with clear instructions on what to do with those accounts after you die.

6. Create a Care Team

This includes people providing:

• Emotional or spiritual support.

• Hospice care.

• Help with household chores on a daily or weekly basis. (Cooking, cleaning, grocery shopping, etc.)

• Transportation to or from doctor’s appointments.

• Personal care such as haircuts, pedicures or manicures, waxing, shaves, etc.

• Assistance with scheduling volunteers, visits and medical care.

7. Call an Attorney

Create or update your will and estate paperwork. Put all your account information, including passwords, in a secure location. Make sure your beneficiaries are named and contact a financial advisor if needed.

8. Create Advance Directives

Put all your wishes about future healthcare in writing. This includes a durable power of attorney, someone who can and will make medical decisions for you when you cannot. Create a living will. Be very clear about the treatments you want or don’t want at the end of your life.

Lastly, create a Do Not Resuscitate or Do Not Attempt Resuscitation order. Both you and your doctor will sign the DNR to make it official.

9. Consider Donations

Donating your organs and tissue is a lovely way to give the gift of life. Research local medical schools or other places that would also take a whole body donation for research needs. Include these instructions in your advance healthcare directive.

Consider whether you want people to donate to a particular organization in your honor. Is there a charity or nonprofit organization that means a lot to you? We can list it in the obituary or tribute after the death. We can also discuss what to do with any leftover household items – many charities have thrift shops where they can sell clothes, furniture, etc.

10. Pre-Plan the Funeral or Memorial Service

Contact at least three local funeral homes to compare prices. You have lots of options to consider, including:

• Cremation (Traditional or Liquid)

• Burial (Traditional or Conservation Cemetery)

• Embalming or Refrigeration

• Home Funeral

• Natural Reduction

Make arrangements ahead of time, including payment, to ensure your wishes are met and make things easier on loved ones.

11. Begin a Legacy Project

Organize your most requested recipes, write out your life story, send emails to your kids telling them everything you love about them. This fills your remaining days with meaning and you’ll leave behind a wonderful gift to be treasured for generations to come.

12. Give Some Thought to Spiritual Matters

Sometimes, this is when we begin to think about our fears. One of my first questions is, “What scares you about dying?” A hospice or medical team handles physical discomfort, and we definitely begin those conversations.

What about emotional or spiritual discomfort? Again, I tell my clients, “This is your experience.” So we must think about what they need for support. Would it be helpful to have a chaplain on the support team? What about a priest, rabbi, imam or pastor? If they belong to a particular house of worship, now is the time to include whoever might make this a more peaceful transition.

If they don’t belong to a specific community, I might begin researching to find someone available to provide pastoral care.

Or we might begin to think about meditation, journalling, psychedelics, and other options.

13. Make Every Moment Count

I encourage my clients to do what they want as often as they can. Listen to favorite songs. Watch the sunrise or sunset. Hold hands with loved ones. Keep the windows open to breathe fresh air. I might put their bed in a room where they can see the garden or people walking by on the street. Listen to the birds.

This is the time to do whatever brings joy. My clients may not have a great deal of time left; however, they can decide how to spend that time. And make it count.

No Need to Wait

Not everyone is going to do everything on this list. Some may add items that I haven’t covered here (like declutter their home, determine who will care for pets, etc.) or check the items off in a different order altogether.

One thing is for certain – we don’t have to wait until we’re dying to do many of these tasks. If you’ve been following along with my monthly guide this year, you’ll notice this is a familiar refrain: Get started now. Preparing ahead of time will lead to a better death someday, and a better life right now.

*my 2026 Monthly Guide to Dying Well

Further Reading & Support

• My 6 Favorite End-of-Life Planning Guides

• Declutter Before Death

• Earth-Friendly Post-Death Options

• Your Bucket List is a Compass

And what about cultural norms? They move even slower. Grown children all over the country care for parents who’ve made no advance directives. Who were too scared to address their aging or mortality. That means their children are stuck with very few options - and none of them good.

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When a need arises, we can’t always look to our culture or systems for support. The urgency of now means looking through the lens of harm reduction. It’s not a substitute for structural transformation, but rather an ethical practice of meeting people where they’re at and providing much-needed comfort.

Desperate Times Call For Desperate Measures

Harm reduction started, formally for me, in the fight against HIV/AIDS in the late 80s. As a young volunteer with Tampa AIDS Network, I worked with AIDS Coalition to Unleash Power (ACT-UP) activists. We organized needle exchanges, handing out clean syringes because people who use drugs deserved to live no matter how badly society viewed their behavior. I also learned to demand – and acquire – medicines for deathly ill people immediately rather than wait for bureaucracies to take years to approve them first.

This experience was instrumental in forming my belief that yes, we must work for change, while urgently helping people who can’t wait for humanity to get their act together.

We all know the real, sometimes profound, mental health benefits from medicines like psilocybin and MDMA-assisted therapy. Careseekers and their therapists come to me with end-of-life anxiety. But where we live, these medicines remain illegal. Travel to get access to them is expensive and time-consuming.

People seek these experiences out of desperation and genuine therapeutic need. The systemic fix is obvious, and I’m part of several organizations pushing for research, funding, rescheduling, insurance coverage, and trained clinical facilitators.

Until that arrives, harm reduction fills the gap.

Trained trip sitters like me transform a potentially destabilizing experience into a safer one. A testing kit or organization is the difference between a psychedelic experience and a fentanyl death. Integration circles help careseekers process their journeys instead of being left alone with them.

Those of us in this space accept a certain kind of risk, along with our clients, because there’s a need and we won’t ignore that call.

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A Broader Ethic

For me, the same logic applies in other areas. Harm reduction is about refusing to wait around for a perfect world while people are suffering right now. Some examples…

• We’re working toward full decriminalization and labor protections for sex workers. That’s the goal. But until then, surrogates and others share “bad date” lists, buddy-check systems, and safety protocols.

• In states that have restricted or banned abortion since Dobbs, the systemic fight continues in courts and legislatures. In the meantime, activists and mutual aid networks fund travel and lodging to places like my neighborhood in Chicago, and distribute accurate information about self-managed medication abortion. Literally life-saving in places where legal access has vanished.

• “Housing First” models give unhoused people stable places to live without requiring sobriety or program compliance first. We cannot expect someone to stabilize their life from the sidewalk. Added bonus? It works better than other models.

• Another lesson from my home in Chicago: migrant sanctuary networks, rapid-response hotlines, and know-your-rights trainings make an immediate difference. They aren’t fixing an unjust immigration system. But we are able to fight ICE and keep families together while working toward that larger goal.

In every case, an injustice is identified, people are exposed to real and often severe harm because of it, and a community response emerges to reduce that harm.

Harm Reduction at the End of Life

For my dying clients, I believe that when there is no perfect option, we must choose the path that minimizes suffering, preserves dignity, and reflects their values. The “best” medical choice and the “least harmful” human choice aren’t always the same thing.

Some examples…

• A client with advanced dementia doesn’t want to eat and has lost weight. He becomes distressed when aides attempt to force-feed him. A harm reduction approach: Accept that he doesn’t want to eat, and stop forcing him.

• A careseeker with advanced cancer has severe pain. Increasing opioid medication could make them drowsier or less interactive. A harm reduction approach: Increase pain medication so that they’re comfortable and accept periods of sleepiness as preferable to uncontrolled pain.

• A dad with Parkinson’s insists on walking independently despite repeated falls. A harm reduction approach: He walks with supervision, using a gait belt or walker.

• My client with advanced heart failure keeps declining hospitalization even though it might briefly prolong her life. A harm reduction approach: Treat symptoms at home, utilizing hospice or palliative care.

• Watching a parent or partner, who never created advance directives, lose decision-making capacity. This means a slow, painful decline. A harm reduction approach: Approving a DNR and saying no to blood transfusions or antibiotics, and yes to comfort medications.

Both/And

Harm reduction should never be mistaken for the goal. It’s a stopgap, and we must spread awareness and advocacy in order to make it less necessary. But treating harm reduction as somehow less legitimate than a culture shift or legislative change helps no one.

Let’s push hard for the world that we want, while refusing to abandon people in the world we’re in. Reducing harm right now makes that possible.

Further Reading & Support

• Get Your Affairs in Order

• The “Right to Try” Act

• A Doula’s Guide to Dementia Care

It seems intrinsic, this natural picture of time. The truth that we live every day. We wake up in the morning – that’s the beginning of the day – and go to sleep at the end. A reliable rhythm.

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Then I’ll travel or meet a careseeker from another culture who reminds me that this idea of time is just that. An idea. And it’s one that not everyone shares. Our American or European-descended idea of time isn’t the law of the universe. Plenty of people, across plenty of centuries, looked at time and saw something completely different.

I can’t help but think about how much this highway or arrow-shaped idea governs the way we talk about dying. We speak of someone “running out of time,” or a life “cut short,” or the end “approaching.” Like we’re driving a car somewhere with no exits and death is like a brick wall up ahead. A structure where the road just stops. A “dead” end.

Good lord, no wonder it frightens us. Who wouldn’t be afraid of crashing into this inevitable, immovable object?

But after talking with clients and their loved ones who live outside that metaphor, I’ve started to see and learn about other ways of holding time.

Fascinating Alternatives

For example, in many indigenous traditions, there’s a concept sometimes called the Dreaming or Great Circle. It’s difficult to translate, since it isn’t really a “time” as colonial culture sees it. It’s better understood as an ongoing dimension that underlies and interweaves with everyday life. Ancestral lives aren’t sealed off behind us. The “past” is a layer of reality still active in the land, in ceremony, and in the world as we’re living it right now.

Hindus and Buddhists picture time as a wheel. Ages rise and dissolve and rise again. Our soul’s story doesn’t end; it turns the way seasons do. Endings, in that frame, are also beginnings.

There’s a beautiful finding from linguists who studied how the Aymara people of the Andes talk about time. They gesture toward the front of their body when thinking about the past. That’s the part we can see. The future is toward the back, the part we can’t see. That’s the reverse of our American habit of picturing the future “ahead.” And when I sit with that reversal for a moment, it makes a strange kind of sense: we see the past clearly, the way we see what’s in front of us. The future remains genuinely unknown.

Science Y’all

It’s common to think of “linear time” as scientifically accepted while cyclical, layered, or non-flowing time is a poetic alternative. Woo-woo talk or psychedelic speak. But let’s consider modern physics for a moment.

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Einstein’s theory of relativity showed that there’s no single universal “now.” Two people moving at different speeds can genuinely disagree about which of two events happened first, and neither is wrong. Many physicists today take the “block universe” idea seriously. That’s the idea that the past, present, and future all exist together. Like a DVD containing every scene of the movie, rather than the story being thought into existence one frame at a time.

Einstein himself, while consoling a grieving friend, called the distinction between past, present, and future “a stubbornly persistent illusion.”

Most of the central equations of physics work exactly the same whether time runs forward or backward. The sense that time flows in only one direction doesn’t come from anything fundamental, just the tendency of heat and energy to disperse. The same reason a broken water glass never reassembles itself.

Some physicists working on the deepest theories of the universe have suggested time itself isn’t a basic ingredient of reality at all. It’s something that emerges from other processes as we go along. A conclusion not so far removed from what indigenous cultures arrived at – just without a particle accelerator.

Real-World Examples

Here are some ways to picture nonlinear or cyclical time, moving from everyday to more mind-bending:

• Spring always “returns”; it doesn’t just happen once. Many cultures (Hindu, Maya, ancient Greek, Aboriginal Australian) built cosmologies where history itself loops through ages rather than marching in a straight line toward some endpoint.

• A clock face is literally a circle. 12:00 comes back around every day - the device we use to track “linear” time is built on a loop.

• Rain becomes river becomes ocean becomes vapor becomes rain again. Nothing about it is a straight line from A to B; it’s a loop with no true start or end.

• Tree growth circles the trunk, year after year, building outward in rings we can count.

• Some theories propose that the universe expands, collapses, and “Big Bangs” again - endlessly repeating.

• Time bends and stretches depending on speed and gravity. A twin on a fast spaceship ages slower than the twin who stayed home. That alone breaks the “time is a straight arrow” intuition.

• Movies like Groundhog Day or (my favorite sci-fi story) Arrival are popular because they let people feel nonlinear time (living a day over and over, or experiencing past/future simultaneously) without needing to understand physics.

• Ever notice you “always” end up in the same kind of relationship, or the same argument at Thanksgiving? I often see life as a spiral, like we come back to the same lessons, but (hopefully) at a different level each time.

• Almost every myth follows a circular “hero’s journey” (anyone see The Odyssey?) leave home, transform, return. That structure resonates because it mirrors how people actually experience growth: not a straight path, but a loop that brings us back changed.

An Open Field Rather Than a Road

None of these are right or wrong. After all, that’s not really the point. Chasing a single correct model of time is a waste of…time. Every culture has had to imagine for themselves - and imagination, once we notice it, is routinely revised.

So here’s an idea, from a death doula’s perspective. This is especially for my readers who’ve had to think hard about endings lately, your own or someone else’s. Let’s try on a different picture of time.

What if the people we’ve loved and lost aren’t behind us on a road, growing smaller in the distance? What if they’re folded into a present that keeps recurring, the way a season folds last year’s rain into this year’s?

What if our own ending isn’t a wall, but a threshold? A much bigger room, one whose far side we can’t see yet.

I don’t know what happens at the edges of our lives. Nobody does, and I’d be suspicious of anyone who claimed otherwise. But not-knowing doesn’t have to be dark or foreboding. Instead, it can be awe-inspiring. We allow curiosity to take the place of certainty. After all, end-of-life, of all subjects, is a place for open minds.

We just have to be brave about it.

So let’s try this: the next time we notice that we’re thinking of time as a straight line running out, let’s gently ask ourselves, “What if it isn’t?” What if it’s a wheel, spiral, or wide field we’re standing in the middle of rather than a highway we’re driving down?

We don’t need an answer. Just the question, and a willingness to let it sit. Reminding us to stay a little more awake to the mystery we’re all moving through.

Further Reading & Support

• What Happens After We Die?

• Ancient Teachings Reshape How We Live and Die

• Tibetan Buddhists Help Non-Buddhists Die with Joy

For most people, “Get your affairs in order” means there isn’t much time left, and there are so many things we have to do while we still can. It’s a phrase doctors use because they can’t spell out a prognosis in blunt numbers, even though some may try. Nevertheless, this directive leaves most of us feeling lost in a fog, unsure what “affairs” or “in order” even means.

Who thinks clearly in the moments right after we’re told that we’re dying? Or a loved one is terminally ill? Acute stress floods our bodies with adrenaline, mixes in cortisol, and narrows our attention. All this inner chaos disrupts our memories and makes it hard for us to process new information.

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Emotions Go Up, Cognition Goes Down

Clients call me looking for answers and understanding. They describe hearing a doctor’s voice as if underwater. Some can’t even remember what was said during the appointment, even though it occurred earlier that very day.

Yet, those doctors delivered the most complicated advice of a person’s life.

It’s a mismatch that no one can really solve. The doctor isn’t wrong. Time is short, and death-related paperwork takes forever, but careseekers are in no state to tackle a to-do list.

The first thing I tell them is that their numbed reaction is normal. It doesn’t mean they’re in denial. Their nervous system is doing what nervous systems do. They must give themselves some grace and time to absorb this new reality. They may need to ask the doctor to repeat things, and it’s helpful to bring someone who can write everything down.

Then we can get started.

If you’ve been following along with my 2026 Monthly Guide to Dying Well, you know that we’re entering August and it’s time to get our affairs in order. I’m pleased to report that most of our to-do items can be to-done way before a diagnosis.

What “Affairs” Actually Means

Here are a few categories that “affairs” usually falls into:

Legal documents. A will, if you don’t have one, determines who inherits property and, if there are children involved, who cares for them. A durable power of attorney is someone to make financial decisions if/when you are unable to. A healthcare proxy or medical power of attorney is someone to make medical decisions on your behalf.

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Medical wishes. An advance directive spells out what kind of care you want or don’t want (resuscitation, ventilators, feeding tubes, etc.) if you can’t speak for yourself. Loved ones acting as proxies or POAs are often left guessing at the worst possible moment, and clear documentation spares them that particular agony.

Financial housekeeping. Bank accounts, insurance policies, retirement accounts, and property titles are often easier to manage, and less painful for survivors to untangle, when we update beneficiaries and grant them access to our accounts.

Personal wishes. Talk to loved ones, repair relationships, make funeral plans, and write letters to people who matter.

I will be publishing my “checklist for the dying” for more specific to-do items in a few weeks, so look for that here on Substack.

Get Started

Even when my clients feel prepared, being told to get their affairs in order still comes as a shock. I’m sure it will happen to me, too, despite my working in this realm every day. Therefore, the most useful first step for all of us is to consider what our dying checklist might look like, write it down, and start to check items off of it now.

For those who’ve been diagnosed with a terminal illness, find one trusted individual (a spouse, adult child, close friend, or a social worker/hospital patient navigator/death doula) to manage the list while your own capacity is compromised.

From there, a workable order looks something like this:

Name a healthcare decision-maker. This prevents the most painful kind of confusion for family members later, and most hospitals can provide needed forms on the spot.

Write down medical wishes, even informally at first. A handwritten note about what matters to you (comfort over aggressive treatment, or the reverse) is better than nothing and can be formalized later.

Locate existing documents. Insurance policies, deeds, account numbers, etc. - find them before trying to create new ones. Many “affairs” are already in order and just need to be gathered.

Contact an estate attorney or use a reputable online template for a basic will if you don’t have one. Many states have free or low-cost legal aid for this specifically.

Say the things that need saying. This has no template and there’s no wrong way to do it.

Hospital social workers, hospice care teams, death doulas, and patient navigators exist to help with this transition. Contacting them isn’t jumping the gun; it’s one of the most practical things you can do. Nobody expects this list to be finished right away.

When a doctor tells us to “get our affairs in order,” it sounds like a direction, but it’s really an invitation. We just have to ask for support and let others carry some of the weight while our own mind catches up.

Monthly Goals for 2026

• January

• February

• March

• April

• May

• June

• July

Nope. Instead, anyone can access their higher power through meditating, fasting, silent retreats…and more. Some do this by ingesting plants. Plants with very specific molecules. Such ceremonies have been part of our species’ spiritual life for millennia.

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Intermediaries - Go Away

Long before organized religions or the colonial crimes that spread them across the globe, spiritual practice in most cultures was individual and participatory. Rather than patriarchal or hierarchical.

And those sacred rituals are still around, despite the imperialists’ best efforts. We just have to look for them.

In the Amazon basin, indigenous communities have used ayahuasca for generations. This potent brew helps participants trust their inner knowledge and healing. For many of my clients and even for me, ayahuasca ceremonies furthered our relationship with the spirit or “more-than-human” world.

Other native peoples work with psilocybin mushrooms. I’ve heard stories about my Celtic ancestors referring to this medicine as little saints. All over the world, ordinary people eat mushrooms and receive guidance personally, without a priestly class standing between them and the sacred.

The medicine is the teacher.

The more I learn about psychedelics, the more I see how even institutional traditions in Judaism, Christianity, and Islam have an older, more direct line to the almighty underneath.

For example, the Eleusinian Mysteries of ancient Greece held rituals where participants consumed a psychoactive brew called kykeon. This was an immediate initiation rite for thousands of people over nearly two thousand years. Philosophers from this time period said their experience was more meaningful than anything else in their lives.

Of course, mystical strands within all religions preserve traces of this today. Contemplatives bypass institutional authority entirely in favor of a face-to-face union with the divine.

But unfortunately, in most places, religions officially replaced participatory models with custodial ones. Ordained gatekeepers — priests, pastors, rabbis, or imams — determined who had access. They alone interpreted scripture, administered sacraments, and declared experiences either legitimate or not.

Some indigenous and shamanic traditions did the same.

Today, I treat all of them with suspicion. They’re modern beneficiaries of a traditional system that suppressed and/or criminalized unmediated access. Why? Because it threatened their power. So-called “primitive practices” threatened their monopoly. “You need us to reach God,” they told us. “On your own, you’re not enough.”

Bullshit.

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The Return to Personal Experience

There is a renewed interest in psychedelics that’s been brewing for decades. On some level, we know when we’re being lied to. I wrote a college paper in 1992 calling for the legalization of LSD. It was the beginning of my psychedelic renaissance and rejection of religion’s gatekeeping traditions.

Clinical research in the 2000s to today repeatedly finds that psychedelic medicines bring about what participants describe as spiritually significant experiences. Comparable in depth and lasting impact to reported near-death or classic mystical experiences.

An added bonus? They arrive without guilt, shame, or a man’s sermon attached.

No one has to explain to us what we encountered or what it means. We have the experience, and then we make sense of it — which is, I might add, the entire point.

I’m not rejecting the notion of community. Many of us who have these experiences go on to build rich spiritual lives, sometimes within existing traditions and sometimes outside them. What changes for us is the source of authority. The experience itself becomes our primary influence, and we are its primary interpreter.

Institutions still offer us meaningful rituals and companionship. We just don’t need them to be gatekeepers. We can trust ourselves after all.

At the End of Life

Nowhere is this shift more visible, or more moving, for me than with my clients at the end of their lives. Terminally ill careseekers bring to me a specific kind of suffering. The terror of ceasing to exist, unresolved grief, or a sense of meaninglessness. They’ve read about clinical trials with psychedelic-assisted therapy for patients with anxiety and want to find some relief before they die. When I sit with them during a medicine journey, I often see rapid reductions in that distress. They talk to me about a connection to God or the universe that reshapes their relationship to dying itself.

So many describe this to me as something they directly perceived, rather than something a man in a collar or yarmulke or taqiyah told them to believe.

This matters enormously for my careseekers who feel alienated from the religious institutions of their upbringing. I routinely tell them they don’t need to believe in a specific doctrine, confess to a specific authority, or receive last rites from an ordained figure to have a profound, peace-making encounter with whatever they understand the divine or the universe to be. That access point can be their own consciousness, guided by the medicine, while I sit nearby to make sure they’re safe.

Options in America

Ketamine is legal in all fifty states. Some communities have created legal, regulated frameworks for supervised psilocybin and ayahuasca experiences. In other areas, careseekers turn to underground facilitators, harm-reduction-oriented communities, and integration circles that focus on supporting each person’s own meaning-making.

I encourage anyone being called to the medicine to a) seek out trained, experienced trip sitters rather than going it alone and b) take a deep breath. For many of us, this underlying shift is clear and long overdue: we don’t need permission to access the sacred. Indeed, we never have.

Further Reading & Support

• Don’t Let Elon Ruin Ketamine

• Tending the Spiritual at Harvard Divinity School

• Why is Integration So Important?

• Reducing Death Anxiety Through Psychedelics

VSED is legal for adults of sound mind living in any of the fifty states. According to the Supreme Court decision in Cruzan v. Director, Missouri Department of Health, “a competent person would have a constitutionally protected right to refuse lifesaving hydration and nutrition.”

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Those who choose this option include people:

• dealing with a chronic or incurable disease.

• diagnosed with early-stage dementia.

• ready to die after having lived long and full lives.

I work with clients who have consulted a physician or hospice for round-the-clock care before choosing VSED,…

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This is a different idea from the more familiar “continuing bonds” work of talking to photographs or writing unsent letters. A healthy grief surrogate is about taking the leftover current — that impulse to check in, care for, teach, or protect — in a different, constructive direction. Before it starts to form into knots of anxiety, restlessness, or numbness.

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Done well, a grief surrogate doesn’t distract from grief or avoid it. It gives us something meaningful to do with it.

The Upside of Redirection

Grief is sadness and so much more. It’s love mixed with attention that once had an outlet and now al…

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Those who die in agony and regret are the ones who spent decades armored in contempt.

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We talk so much about toxicity as something done to other people. A cruel boss who makes the workplace intolerable. A cutting remark from some random online commenter that leads a writer or reader to self-harm. Pundits who spew hatred out into the world.

All of that is true, and it’s only part of the story.

Toxicity is also something perpetrators do to themselves. Every cortisol spike, severed relationship, or word/act of cruelty accumulates in the body. Similar to the way secondhand smoke accumulates in the lungs of a partner or children. Except in this case, the spewer is the smoker.

My Definition of Toxicity

It’s OK…

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Of those at least 65 years of age, there were an estimated 5 million adults with dementia in 2014 and projected to be nearly 14 million by 2060. Currently, 6.2 million people are living with Alzheimer’s Disease.

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Adults with dementia need caregivers. More than one caregiver is necessary for those who require round-the-clock supervision. As they get closer to the end of their lives, family members, friends, healthcare workers, and death doulas must work together as a team.

This includes quality training and awareness so our loved ones get the loving care they require.

Consider Your Options

How do you want to be cared for if you get some form of dementia? Consider your options before a diagnosis. This includes choosing a healthcare proxy, who will ma…

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The Medicine tells its story through archival fragments, congressional transcripts, and a future archivist cataloguing artifacts nobody wants to look at directly.

For thousands of years, we’ve erased matriarchal societies and their lessons. We’ve rewarded and prioritized war-making and violence from afar. What would it take to reverse that trajectory? Not all apocalypse stories are sad. I’m considering a utopian future for the world. And what it might take to get there.

I hope you’ll click here to give it a read!

My latest short story, Promises (based on real events), has been published by Be About It Press. I hope you’ll give it a read!

It’s about what unfolds in the strange choreography of grief thirty years on: friends who show up and the ones who can’t, reporters circling for a quote, and the uneasy space between ideals and reality. A death-penalty-skeptical activist who’s spent months lobbying for this exact outcome has to sit with that contradiction in real time, in a red dress, in front of cameras, surrounded by people who knew her before any of this occurred.

Woven through the reunion is a decades-long, unconventional relationship. But Promises is also a story about how death — sudden, delayed, anticipated, or simply threaded through a life in small ways — reshapes the people left behind. The sometimes unlovely ways we metabolize loss: through old songs, old jokes, old grudges, and the people we keep choosing to come back to.

Click here to read it.

The best bucket lists I’ve seen aren’t scavenger hunts for impressive experiences. I encourage my clients to create something that tells me who they are and who they want to become before they die. Here’s how we build a list that actually holds up under our own scrutiny.

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Start by Subtracting

Most people build their list by brainstorming things that sound exciting. Try the opposite first: write down everything currently on your list, then cross out anything you added because it seemed like the kind of thing a person “should” want.

This isn’t about your kids, partners, or followers online.

I also gently encourage my clients to be honest w…

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That’s the kind of moment that death work teaches me to stay alert to - not just how someone dies, but how they keep living, and with whom.

As a death doula, a lot of what I do stays in the sorrowful or practical realm: legacy conversations, advance directives, vigil planning, grief support. But in the best deaths, there are moments of joy. And I’ve noticed a difference between the happiness clients experience by themselves and the happiness they experience with others.

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Research suggests that there are differences between them. And joyful togetherness is one of the more meaningful experiences we can have at the end of our lives.

Positivity Resonance

Barbara Fredrickson, a noted professor of psycholog…

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The bucket list, in its many forms across history, has always been a tool for confronting mortality and turning vague longing into a plan of action. That’s why it’s on my 2026 Guide to Dying Well. Let’s get started!

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Wanting More From Life

The phrase entered popular consciousness largely through the 2007 film “The Bucket List.” Jack Nicholson and Morgan Freeman starred in the movie as two terminally ill men compiling a list of experiences before they die. The movie gave us a great-sounding phrase, but the underlying idea is way older than Hollywood.

Ancient philosophers wrestled with how to live (and what to do with our remaining time) in the shadow of deat…

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A fictional story based on real events, Katie’s Way Out is set in Tampa Bay in April of 1987, and follows two teenage girls who sneak onto a British naval ship one night. A coming-of-age adventure complete with bad accents, leather pants, and big hair. But underneath is something else: Katie and a young sailor talk honestly about grief, losses that go unpunished, and what it means to escape — or serve — systems that hurt you.

You’ll recognize that territory.

What I hope resonates, and why I wanted to share it with my readers, is the moral weight of Katie’s actions, all that’s left unsaid, and the surprising tenderness that’s shared between strangers. That’s where my story lives.

I hope you’ll give it a read. It’s free!

• If you’d like to read the journal online, click the link here.

• If you’d like to download a copy for yourself, click here.

For the Haudenosaunee — the Iroquois Confederacy, made up of the Mohawk, Onondaga, Cayuga, Oneida, Seneca, and Tuscarora nations — this question was their governing principle. Embedded in the Great Law of Peace, their foundational constitution, was a directive that shaped every major decision made by tribal councils: consider the impact of your choices on the seventh generation yet to come.

The Seventh Generation Principle is older than the United States, which, according to many historians, borrowed heavily from the Great Law of Peace when crafting the Constitution and the concept of federalism. Since we are celebrating the 250th anniversary of this flawed but beautiful country, I thought maybe a deep dive into this underreported past was warranted. A deep dive that could change all of our lives and deaths, for the bett…

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