I wrote half of last month’s column in an airport, trying to get to my grandmother before it was too late. Neither of us made it; she was gone before I even boarded. When I was done ugly crying – on the phone to my cousin as he broke the news, then again in front of the alarmed workers of the airport Costa – I wanted to metaphorically tear up everything I’d written and start on this instead, even if I didn’t have a clear idea of what this was yet, beyond something about rosemary’s tie to memory and a roast lamb no one would ever make for me again.
But it was the Winter Solstice coming up, and my first entry in a column on the place where food and magic intersect; and, crucially, it was too close to that moment of raw grief to pull it together into something coherent, something worthwhile. So I finished that piece on tea and mead and spices and the interwoven debts that we owe each other, and I’m bringing this to you now instead.
Rosemary is the herb of memory. I miss my grandmother.
When dealing with traditional herbal correspondences it can be hard to separate the magical from the mundane. Partly because our ancestors didn’t make that distinction themselves, seeing magic, faith, and physical medicine as part of a single whole in a world entirely imbued with the sacred. But also because, as traditional herbcraft has faded out of practice, attributions which were once meant to be understood literally can seem like metaphor or mysticism, only to then surprise us when we rediscover their physical nature. Rosemary, and the impact it has on memory, is one such example.
When Ophelia includes the herb in her list of accusatory flowers, it’s easy to assume her famous quote, “rosemary, that’s for remembrance” is as metaphorical as the rest. But rosemary has long been a herb associated with funerary rites, with death, and with remembrance of the departed, traditionally being placed on the biers of the dead. Its strong smell, which lingers in the room like a memory, would have helped to cover the beginnings of decay, as well as indelibly tying itself to that moment of grief and loss in the mourner’s neurology. Scent is one of the key triggers of memory, even with substances that don’t specifically effect cognition – how much more powerful rosemary’s impact then, with the discovery that it does.
Rosemary has other folkloric ties to memory outside of the funeral parlour – with Ancient Greek students supposedly using it as a study aid, and Sir Thomas Moore declaring the herb sacred to friendship because it provokes remembrance of the living, not just the dead.
As modern medical research examines herblore to see if there are effective treatments that have been overlooked, or that can be made effective with modern scientific techniques, rosemary has had its turn in the laboratory. Studies indicate that ingesting rosemary enhances recall speed as well as improves episodic and working memory, and may even have a positive impact on Alzheimers, though more research needs to be done to understand why.
Even inhaling the scent of rosemary seems beneficial, though the impact is smaller, and works best if the subject is exposed to the scent both during the learning process and then again when asked to recall things later on – scent as a memory trigger, enhanced by the effects of rosemary’s unique chemical composition on the brain.
A bouquet of herbs, including rosemary, in a bowl
This puts us in a position where rosemary is uniquely suited to remember and honour the beloved dead. Symbolically linked to the dead through religious rites and burial practices, tied to love and the transition from one life stage to another (it is worn at weddings as well as funerals), rosemary also helps us to remember in a literal, physical way. Eaten regularly, it may help preserve the memories of those departed, as well as prompting us to remember meals shared or time spent cooking together when the familiar scents reach us and work their neurological magic.
To combine the spiritual with the physical is a very powerful thing, grounding us in both realms at once, and binding them together in us. That which is gone is never really gone.
Garlic and Rosemary Lamb
Growing up, my grandmother was the only person who could cook a roast lamb I actually enjoyed eating. I don’t know how she did it, and she was a cooking by instinct sort of person so there are no recipes left behind. I still don’t eat lamb that much, though it’s appeared more often in my house since I married a New Zealander, but I knew it was exactly what I wanted to make for this column, and my grandmother. I hope you like it.
Lamb with rosemary and peppers
Lamb shoulder (900g)
Fresh rosemary (2 – 3 tablespoons, chopped)
3 bulbs of garlic
500g baby potatoes
125 ml red wine
Olive oil
Salt and pepper
Flour
Start by setting the oven to pre-heat at 240 C (220 C fan, ~450 F). While that’s heating up, mix four tablespoons of olive oil with eight cloves of crushed garlic, the rosemary, and the salt and pepper. When thoroughly mixed rub it all over the lamb shoulder. Halve the remaining garlic bulbs and place them with the potatoes in a roasting tray, drizzle with olive oil, crack salt and pepper over them, and then place the lamb on top. Finally, pour the wine over it all and cover with a tinfoil tent before placing it into the oven.
Let the lamb roast for fifty minutes and then remove the tinfoil for the final ten minutes to let it crisp up nicely. Once it’s done let the lamb rest for fifteen minutes. While the meat is resting, remove the garlic and potatoes from the tray so you can turn the drippings into a gravy by whisking in flour over a low heat until it reaches your preferred consistency.
American culture is extraordinarily goal-oriented. This January, pause and notice the messages and expectations that are motivating you. Everyone creates goals regarding all aspects of life. In a single day, we set a vast number of goals to accomplish.
Adults have daily, monthly, or yearly goals for their job which may not be in alignment with their additional career goals. Athletes have intense levels of goal achievement and mindset work. Others may have spiritual or emotional goals. You might also have social, educational or even comfort goals, for instance, you want to purchase your own car or house or you want to start a family or gain independence. This list of goals can go on ad infinitum, but you have gotten the point by now and I’m beginning to feel overwhelmed by just listing possible goals.
Thus, I began polling people about their goals. I recently had a conversation with an acquaintance who stated their goal for 2024 was to add days to their family vacation. And then I sat there waiting in silence until it became uncomfortable, and I realized that was all they were going to say. I found myself in awe. I did not know what to say or how to respond as my mind whirled out of control with the list of goals I had set just because it’s TODAY and tomorrow isn’t promised!
My mind thought of my weightlifting, cardio, yoga, nutrition and meditation goals, the stack of books I plan to read, the podcast episodes and blog articles I want to do, the networking organizations and business researching, and any new certifications I think will benefit myself or my staff. Every year I want to see an increase in business profits. This breaks down to clients, social media and marketing goals, community outreach, pro-bono work.
As a member of my religion’s clergy, I have personal spiritual preparation and educational goals. Then there are relationships, family, and travel goals. And, underlying it all, my goal is to just handle what I’ve got scheduled and NOT take on any other GOALS!!!
I realized making New Year’s Goals is passe when I attended a business networking group recently, the host asked, “For those of you that are still into it, raise your hand if you’ve set goals for 2024?” Only about a third of the people raised their hand.
As a 2023 volunteer service goal, I committed to hosting monthly, virtual, Death Cafe meetings. For more information go to DeathCafe, According to the Death Cafe rules for these meetings, the only requirement is not to have a plan or agenda and to simply to hold space for the conversation. These are often sacred and sincere moments where people are vulnerable and share their thoughts and experiences. That required a personal commitment to do so. I see goals as personal commitments for growth, if you are not growing and learning you are stagnating.
One of my yoga certifications is in Brain Longevity Therapy Training. One of the tenets to a healthy aging brain is to keep it active. Activities like learning new skills, reading, socializing, movement work like balance and exercise all affect the brain. The brain and body need to be challenged to keep them working at optimal levels. However, growth is often a process that occurs even during dying and all the way through death. I often look at death, not only as transition but as an initiation. Death is an unknown and it takes preparation to face it in peace. Physician-assisted suicide, or “medical aid in dying”, is legal in eleven jurisdictions, the Commonwealth of Virginia is not one of them. As a Death Doula, I have been bedside with several people as they were actively dying. Some are aware and some are not, while all these deaths were medically regarded as peaceful. I do not know that they would classify as a “good death” if it were my own.
Holding space for Death is a growth experience. My ultimate goal is to have a good death and all my other goals reflect that. No, I am not actively dying, I am actively living. I am acutely aware of the fact that tomorrow is not promised and that gives the simplest of moments a glamor that most people do not see.
For example, walking my very elderly dog is its own growth experience in mindfulness. We walk slowly and methodically. Her eyes are not as clear now and it is obvious she has become mostly deaf. She avoids stairs or steep hills. She demands pets from any stranger and wants to sniff any friendly dog. She takes long pauses to sniff thoroughly between bushes and under benches. I have time to notice the clarity of the stars above and watch the diamonds of frost begin to form as we stand silently on the abandoned sidewalks in the winter darkness. The sweeping mantle of cold (or possibly arthritic joints) makes her knees tremble slightly.
We slowly walk along, allowing her to go as far as she wants and where she wants, until she spontaneously turns around and heads back. Some days she stands in the doorway to our apartment looking through as if she has forgotten where she is, cautious about entering. Other days, as she sleeps long and deeply, I will hear her whimper and look over to see her feet moving slightly, clearly dreaming of running and playing with other dogs or her humans. I know time is growing shorter for her, but we will face that together. I do not ever want her to feel alone or unloved. We can never accurately predict when a natural death will occur, so you must be ready all the time. Ushering a pet is much like a person. We sit and just be with each other. Sometimes I talk but other times it is just not needed. She just wants someone to be present and touch her. So much is conveyed through touch.
Time seems to shrink for elders. One activity, like a medical appointment or meeting a friend for coffee, can be exhausting. You think you have all the time in the world to accomplish the things you want but knowing Death can come at any time can make the experiences of life taste even more sweet. I do not like to repeat experiences, travel to the same places or even eat in the same restaurants because I might miss an opportunity! When I die, I want to know I lived my life to its fullest and took every opportunity to suck the life out of every single minute. This requires commitment, planning and setting goals.
Take a minute to consider if you knew you only had one year left to live. How would you live differently? What would take importance? Do you have the cash? Make it happen. Set those goals! Say the things that need to be said! Do the things you need to do! Heal the things that need attention! Let go of the past and be present! It’s time to outgrow your comfortable life and move into the adventure of living fully so that when Death arrives you are ready to take that journey with her without hesitation or regret weighing you down.
P.S. I offer a virtual Death Cafe meeting every month, for more information google “Death Cafe of Southside Virginia” or look us up on DeathCafe.com
— In the midst of feeling so alive on a beautiful day, why do thoughts of death creep in?
“But sometimes we have an awakening experience, like realizing in a particular moment of contentment or completion that today wouldn’t be a bad day to die. It seems to be a message from the deepest part of the self that is always aware of the fact that we’re mortal.”
Movies at midday are one of the pleasures of aging; the theaters aren’t crowded, the tickets are cheaper, and later you can fill up on happy hour hors d’oeuvres and skip dinner.
I was headed for a matinee on a balmy, blue sky spring day a few weeks after a recent decade-changing birthday. Passing a flower market on the corner, I bent my head to the profusion of peonies clustered in tin buckets, breathing in their deep, rich scent. All at once I was literally set back on my heels by a thought that had never once occurred to me before, a thought so fully formed that it sounded like a voice in my head: This wouldn’t be a bad day to die.
“But sometimes we have an awakening experience, like realizing in a particular moment of contentment or completion that today wouldn’t be a bad day to die. It seems to be a message from the deepest part of the self that is always aware of the fact that we’re mortal.”
The censor that pushes the unthinkable back into the unconscious must have been asleep at the wheel. Why this, why now? I wondered. Why, in the midst of feeling so fully alive — so healthy, happy and untroubled — was I suddenly struck by the notion of my own death?
“If you don’t think about dying once a day or more – including doing the math when you read the obituaries – you’re in denial.”
I’ve lost friends and family members to death, but it’s only lately that I’ve thought much about my own. It’s not a preoccupation or obsession — not yet — but it’s increasingly taking up space in my head. The friends I was meeting at the theater agreed that, at our age, “If you don’t think about dying once a day or more — including doing the math when you read the obituaries — you’re in denial.”
Unexpected Thoughts About Death
That consciousness of our mortality happens in unexpected ways at ordinary moments. Death may not be imminent, at least not as far as we know, but it’s not unthinkable, either. Some of our closest friends and relatives have already died, and others may be in declining heath or facing a terminal illness.
Our own death is a subject we can talk or think about for only a brief time before we’re submerged in sadness, overcome with fear or frozen in disbelief. Yet daring to confront it frees us to fully engage in our own lives and those of the people we love until the last minute. That’s the existential telegram we don’t always see coming, the real message from the unconscious: Life itself is a terminal diagnosis.
Perhaps you or someone you love has received a more immediate one. The one unexpected gift of living with such news is dying with it; it’s an opportunity to examine your life and make meaning of it, finish your unfinished business, express your regrets, make your amends and renew your bonds with those you love.
Of course, you don’t have to be dying to do those things. In fact, the sooner you do them, the better: None of us knows when death will come or how we will experience it. We may plan for it, to the extent that we can, and in fact we must. We may hope for a long, slow gentle death with time to say goodbye before surrendering, or perhaps a lucky one, something so quick we never see it coming or suffer the grief of those we leave behind.
The good news is that facing up to death reconnects us to the richness of living as fully in the moment as we can for as long as we can.
The more we know about death, the less there is to fear it. We may approach it in small chunks, or from different perspectives, but we can’t put it at the safe distance it used to be. The good news is that facing up to death reconnects us to the richness of living as fully in the moment as we can for as long as we can.
The deaths of friends or acquaintances bring me closer to thinking about my own. Right now, I believe I want to have a “conscious” death, free from pain but not awareness. When the time comes, though, I may change my mind; I thought I wanted a natural, unmedicated childbirth, too! Because I live in a state that has legislated compassionate choice, I have the right, whether or not I have the opportunity, to decide when and how I die.
Until then, though, even the most thorough planning and foresight are not cure-alls for coping with the eventual reality of not being, the terror at the end of the self. “Anxiety is the price we pay for self-awareness; staring into death renders life more poignant, more precious, more vital,” as psychoanalyst Irving Yalom writes: “Such an approach to death leads to instruction about life.”
An Awakening Experience
We may be too involved in the prosaic quality of our everyday lives to let that terror out of the place we’ve corralled it — in our nightmares, in the depths of the unconscious, in the assurances of faith that another, better existence awaits us in the kingdom of heaven. Or we may have stored it in the mental compartment where we’ve contemplated our ultimate end, analyzed and even reasoned with it, and wrestled it to the ground on which we base our beliefs and values.
But sometimes we have an awakening experience, like realizing in a particular moment of contentment or completion — a garden planted, a goal accomplished, a conflict resolved, a problem solved, a question answered, or even a burden lifted — that today wouldn’t be a bad day to die. It seems to be a message from the deepest part of the self that is always aware of the fact that we’re mortal.
I wake up in the morning – and sometimes, lately, after an afternoon nap – pleased and surprised that I’m still here.
The message stimulates us to let go of ambitions and desires whose wanting drains the pleasure out of what we’ve already acquired or accomplished. Our imagination may still take us to places and experiences that thrill us to consider, but it may be wiser now to look at our bucket list one last time, cross off what’s not important any more, and stop fretting about what often still bugs us; getting to the bottom of it, carrying a grudge, caring what strangers think of us, going places we don’t want to go, being with people we really don’t like, doing things we no longer enjoy, and especially, saving things for later.
My own bucket list in this autumn of my life is divided into two columns: “Still Theoretically Possible” and “Very Long Shot.” What’s on the former are a winter in the Caribbean, finishing my memoirs, getting a tattoo, and finding a man who drives at night. On the latter are going around the world, falling in love or even lust again, winning the lottery, and having Oprah choose my still unwritten novel for her book club.
I do not long for death, or await it, as Mary Oliver writes, wondering if I have made something particular and real of my life. I am fortunate in having family and friends who reassure me that I have, and words, written and spoken, that have made a positive difference in the lives of others I will never meet.
I wake up in the morning – and sometimes, lately, after an afternoon nap – pleased and surprised that I’m still here. I believe in the conservation of energy, and that when I die, mine will be absorbed into a cosmic consciousness I’m certain exists outside of time.
If I’m wrong, of course, I’ll never know. And that’s a comfort too. And meanwhile, I’ll stop and smell the peonies.
In 2020, in the midst of a worldwide pandemic, my 85-year-old father suffered a heart attack in Pittsburgh and was rushed to the hospital.
The stent, a minorly invasive procedure, was the easy part.
But the two days he spent in UMPC’s state-of-the-art ICU were a nightmare. The anesthesia made him groggy and aggressive. The sleep meds made him perversely restless and short of breath. The IV he constantly fiddled with, once even ripping it out, much to our horror.
Instead of restraining him, which I imagine to be a cruel and unusual punishment for an Alzheimer’s patient, the ICU staff let me stay with him overnight (a massive kindness made greater by the strict Covid protocols of that time). This way, I could keep him from wandering, from pulling out the IV, from being confused about where and why and what. Every two minutes—I timed it, and it was comically on the clock—I explained and comforted and explained again. By midnight, I thought I would go mad with worry and exhaustion. By 3 a.m., I was seeing stars, my father and I afloat in an endless hallucinatory universe of the now. By 6 a.m., we were both catatonic.
After he came home, my father was in a bad state. Physically he was fine, if a bit unsteady, but emotionally, he was depressed, anxious, raging, unresponsive. His appetite was out of control and he raided the fridge at all hours. He barely slept, wandering the house like a ghost of himself. It took almost three months for him to return to his ‘normal’—another immense gift from the universe, as medical crises often spell inexorable decline for the elderly.
A year later, the doctors discovered a giant (painless) aneurysm in his stomach, which could rupture and kill him “at any moment”.
Operating would mean a five-inch incision, at least five days in the ICU and up to a year to recover fully (if at all). For someone with dementia, major surgery also seemed a cruel and unusual punishment. From New York to Philadelphia to Pittsburgh, my siblings, my mother and I met over video chat to discuss at length. We made the difficult decision to let the aneurysm be, to keep my father comfortable and at home.
Initially, my mother felt tortured. Were we giving up on my father? Was she abdicating her responsibility?
These are questions that modern medicine is not always fully equipped to answer.
Doctors (especially surgeons) are often focused on finding and fixing the physical problem. But Alzheimer’s is a uniquely mental condition and it forced us to consider my father’s health and well-being on more than just the physical front. We wanted to prioritise his dignity, his comfort, his pain-free state: namely, his overall quality of life.
Days later, the doctors told us that the aneurysm was actually inoperable because of its position in his body. Moreover, there were two rogue blood clots that, if disturbed, could travel to the brain and kill him instantly. Our decision had been the right one, not just mentally but also medically.
Our family made another big decision at this time: we would not take my father to the hospital anymore—instead we would start palliative care.
I have been recommending Atul Gawande’s brilliant book Being Mortal to everyone since I read it five years ago. It lays out the case for palliative medicine (a.k.a. hospice care) in compelling detail. Instead of trying to prolong life, palliative care prioritises a patient’s physical and mental well-being and focuses on pain management. Not only does this kind of care drastically reduce the chances of family members developing major depressive disorder, but the patient outcomes are astonishing:
Those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25% longer. If end-of-life discussions were an experimental drug, the FDA would approve it.
Atul Gawande, in his book ‘Being Mortal’
In February 2023, my parents moved to Dhaka after 54 years abroad (in Libya, Nigeria and the States), abandoning the isolating, exorbitant, often neglectful care networks of America for the familial support and affordable at-home caregiving of Bangladesh. We were privileged to have this option, to have extended family so loving and helpful, to have enough money to pay rent and hire multiple caregivers.
For my mother, who had been my father’s full-time caregiver for over a decade, it was a new lease on life, letting her visit childhood friends, walk in Ramna Park every morning, get a full night’s sleep. We were additionally lucky that over 10 months, we did not have to see a doctor because my father’s occasional tummy upsets and falls did not result in serious illness or injury.
In December 2023, my mother left for the US for five weeks to visit my sister and her three children and to hold her newest month-old grandchild (my brother’s first child) in her arms. It would be the first time in more than a decade that she would leave my father for more than a few days, and she agreed to this vacation only because I had taken an extended break from my life in New York to be in Dhaka while she was away.
Three days after she landed in Pennsylvania, my father suffered his first medical crisis in over a year: a distended belly and extreme stomach pain.
I immediately called my cousins who live down the street. Two of them brought over their mother’s doctor, a young generalist who worked in the ICU of the hospital around the corner from us in Bonosri. Seeing my father’s taut and grossly swollen stomach, the doctor advised urgent hospitalisation. Thus started a gruelling, repetitive, exhausting conversation about palliative care, all while my father cried out in pain from the bedroom.
Despite several palliative and hospice centres in Dhaka, the concept seems unknown to many Bangladeshis, perhaps even heartless.
Neither of my cousins could sleep that night after hearing my father’s cries. I explained why we had decided against hospitalisation, against X-rays, ultrasounds and blood tests, against antibiotics and IV-administered fluids. I predicted that the hospital would likely have to restrain or sedate him or both. I said that even if we eased his physical state, mentally he would be traumatised.
This resistance to palliative care is not uniquely Bangladeshi. Families across the world are torn apart because family members have different ideas on how to best take care of a loved one. Too often, no one has asked the patient their preferences about resuscitation, intubation, mechanical ventilation, antibiotics and intravenous feeding. Too often, it’s too late to ask by the time these medical interventions come into play.
The doctor finally offered pain and gastric medicine via intravenous injections. One bruised wrist later, my father was more comfortable. Over the next 24 hours, he had two more injections, but by the third one, the pain meds were no longer working.
At 2 a.m. on a cool Dhaka winter night, we levelled up, the doctor generously taking time off his night shift to come to our house with a nurse and administer an opioid that eased the pain for another day and half.
By Christmas, or Boro Din as they call it in Bangladesh, I had defended palliative care more than half a dozen times to my relatives, each one aghast at how my father could suffer so, without my helping, i.e., hospitalising him.
This then was my struggle: to remember I was not there to fix anything, but to ensure that he remain in familiar surroundings, in his sunny airy bedroom. That he not be in pain.
This too was my struggle: to get my extended family on board with palliative care.
The cousin who came to live with us in America when he was in high school and who idolised my parents. The cousin who asked me to bring my father’s nice shirts and blazers from Pittsburgh so he could wear them. Their sweet wives, my bhabis, and their lively loving children who visited my father almost every day. To hold back my kneejerk reactions:
Are they questioning my family’s judgement? Is this the patriarchy at work? Do they understand that it is no easier for me to see my father in pain?
My challenge was to set my defensiveness aside and try to infuse their love and concern with knowledge and perspective, so they could help me help my father spend his remaining days in comparative ease, rather than more aggressive medical treatment.
My last struggle was the hardest of all: The one that questioned the kind of life my father had been living these last few years.
Nine years after his Alzheimer’s diagnosis, he could not do a single thing that used to bring him pleasure: dressing nicely each morning, making himself breakfast while exclaiming over the newspaper headlines, reading history books and novels, writing fiction in Bangla, teaching geology in English, wandering the EkushayFebruary book fair, visiting his ancestral home in Barahipur, playing cards and watching action films, making his grandchildren collapse into giggles, walking on the deck at sunset with Amma, holding court with the Bangladeshi community in Pittsburgh, speaking to his two beloved remaining siblings, my Mujib-chacha and Hasina-fupu, delighting my mother with his quick-witted jokes.
If he could make no new memories and the only joys he had were fleeting—the chocolate chip cookies from Shumi’s Hotcakes, my mother’s smiling face, his caregivers’ tender ministrations—were these enough?
Was there some Zen-level lesson here on living in the moment?
And when these brief moments were interleaved with longer troubling periods of confusion, distress, rage and sadness… What then?
What about the endless hours spent restless and awake, his eyes lost and searching?
My father and I had had a fraught relationship my whole life.
Patriarchal and emotionally distant, he threw me out on several occasions, literally and figuratively. I didn’t speak to him for years at a time, and even reconciled, our exchanges were limited to politics, education and writing. He seemed uninterested in anyone’s emotional life, unable to engage in conflict without judgement and anger. His gifts of intellectual brilliance, iron-clad willpower and moon-shot ambitions did not make him an easy father—or easy husband, for that matter.
But now, none of that mattered. The only thing that did was my attempt to attend to him with kindness.
Linking his dementia-fueled rage to his life-long habitual rage would make the already difficult task of caregiving impossible. I had read enough studies that showed that caregivers died earlier because of their stress. It wasn’t hard to see the toll it had taken on my mother over the years. She had been hospitalised for rapid heartbeat issues twice last year and, despite a lifetime of healthy living, had developed high blood pressure to boot.
In his sleep-deprived, pain-addled state, my father didn’t always respond or recognise those around him. But one night, in a moment of lucidity, he reached for my hand and asked urgently, “Are you doing ok?”
“Yes Abbu,” I assured him, “I’m doing fine.”
And then he said—faint, incomplete, clear—“Take… your Amma.”
I said, “Of course I will.”
He was telling me what I’d always known, that despite everything, he had always looked out for my health and self-sufficiency, and more importantly, that looking after my mother was our shared act of service.
If this winter of struggle and sorrow gave my mother more time in the world, then I was ready for it. Would that the path were palliative for us all.
On the day before my sister Julie died, I lay down on her bed and held her gingerly in my arms, afraid that any pressure would hurt her. She had lost so much weight that she looked like a stick figure I might have drawn when we were kids. As her body had wasted, her tumors had grown — now several of them bigger than baseballs. Her abdomen looked like the lunar landscape, with protrusions everywhere, the sources of her pain plainly visible.
Two and a half months earlier, her oncologist explained that these tumors might soon block the liver’s ability to drain properly, resulting in liver failure, usually a fast and painless death. “It will be as though you’re going to sleep,” I remember him telling us on a Zoom call.
That had not happened. Those tumors continued to grow. No matter the doses of fentanyl and morphine, Julie cried out in pain, the only time during her long illness that she suffered like that.
On the bed, Julie and I said little as I smelled her hair, rubbed her back and told her how much I’d miss her. Born five years apart (I am the elder), we were a pair of matching bookends — from our teenage years, when we’d go to our respective queer bars, to later in life, when each of us faced a cancer diagnosis. I asked if we had anything unresolved between us, as my therapist had suggested. “Nope,” my sister replied. “I don’t want to leave you all, but it’s time.”
A few hours later, she joined the rest of the family for our last supper together. I don’t remember much of the evening; either I failed to capture that memory or I’ve erased it, too painful to keep. I do recall Julie had one bite of a friend’s homemade Key lime pie. Apparently, a sweet tooth never dies, even if you are about to. Before bed, Julie hugged and kissed each of us: her wife and two daughters; my brother, Jay, and his wife; and me. Tucked in under the covers, I pulled out my iPhone to continue a ritual I’d recently begun with my siblings. From the guest couch, I texted:
Steven: Good night, sibs
Jay: Good night 😘
Julie: Good night to the best big brothers in the whole world 💚💙❤️
Jay: Love you to the moon and back!!
Steven: And to the bestest sister ever
***
Two months earlier, I joined a conversation my sister and her wife were having with a social worker, a new member of their hospice care team. They kept discussing “the MAID,” which I soon came to understand is the acronym for the New Jersey law referred to as Medical Aid in Dying. It allows New Jersey residents with terminal illnesses to choose to end their lives by taking a cocktail of life-ending medications.
This important piece of legislation was enacted in 2019, and as of last year, 186 people had chosen to die this way. (That’s a very small percentage of annual New Jersey deaths.) Julie, a lawyer, had done her research and had told me that the Garden State is one of only 11 jurisdictions (10 states and the District of Columbia) that allow medical aid in dying, also known as death with dignity and end-of-life options.
If you live in one of the other 40 states, you must wait for the Grim Reaper to pay a visit, no matter how much pain and suffering that entails. Nor can you pack up and move to New Jersey (or most other states where MAID is legal), because you must be a resident to qualify, which, at best, can take time. Time is usually not readily on hand for those who are terminally ill.
In late 2017, Julie learned she had advanced ovarian cancer. Since then, she’d endured one nine-hour surgery, six rounds of chemo, three recurrences and two clinical trials. “Enough,” my sister told her oncologist a few days before her 61st birthday, in April of this year. “I’ve decided to end treatment,” she added, to make sure he understood, and then sang, off-key, the famous Carol Burnett song, “I’m So Glad We Had This Time Together.” She asked, “How much time do I have left?” His reply: “Two or three months, at the most.”
My sister understood from Day 1 that she’d most likely die from this cancer, which, when advanced, has a mortality rate of 80 to 85 percent, according to Dr. Jason Konner, a gynecologic oncologist in New Jersey. One by one, women she had befriended in an online support group died, their last weeks and days often made awful by what Julie called “Hail Mary” treatments — drugs, many with harsh side effects, often used out of desperation or denial.
“I do not want to die like that,” my sister told me repeatedly. “This is about me taking control of my life.” She added, “I want you to write about this after I’m gone, because not enough people know about this option, even when it’s available.”
She was right. Few of our friends knew of this option, even those living in New Jersey. Kim Callinan, the chief executive of Compassion and Choices, a nonprofit that led the effort to pass New Jersey’s MAID legislation, told me these “laws are meaningless if patients are not aware they exist, which is why we focus on public education during the first five to 10 years after a jurisdiction has authorized medical aid in dying.”
The doctor’s sobering “two to three months” estimate easily qualified Julie for MAID. But that was about all that was straightforward. To hear opponents of the right to die talk, you’d think it was easy to obtain the life-ending medications. New Jersey and most other states where MAID is legal require a patient to be a mentally capable adult resident diagnosed as being terminally ill by two doctors. Julie had to request the drugs twice verbally, with a minimum of 15 days in between each request. At the time of the second ask, she had to be given the opportunity to rescind her directive. The law also required her to sign a written request in the presence of two witnesses, one of whom could have no financial interest in her death.
Julie persisted.
In recent months, lawmakers in at least nine other states have introduced MAID legislation, but opponents remain adamant. As recently as last year, Pope Francis condemned assisted suicide, saying, “We must accompany death, not provoke death or help any kind of suicide.” Other objections come from advocacy groups like the National Council on Disability, an independent federal agency that advises on government policies affecting people with disabilities; the council fears the potential exploitation of vulnerable people, especially if they feel they are a burden to family members. Julie was well aware of these concerns, but she believed MAID’s built-in safeguards prevented such exploitation.
***
With the MAID request approved, Maddy, Julie’s spouse of 35 years, picked up the prescription from a local pharmacy. The price: $900, which is not covered by Medicare, the Department of Veterans Affairs or many private insurance plans. A study published in The Journal of the American Geriatrics Society last year found that 96 percent of people who died by medical aid in dying were white and 72 percent had at least some college education. “The reality is that communities of color, for a wide variety of reasons, also are more likely to utilize aggressive care and less likely to use other end-of-life care options, such as hospice and palliative care,” explained Ms. Callinan. People without the resources to pursue MAID may be forced to make a different choice: suffer through a painful death or take matters into their own hands. “Be sure to include these statistics when you write about this,” my sister directed me.
With her pain unabated, my sister’s next task was to choose the day she would die. Our entire family supported Julie’s decision; still, we did not want to say goodbye. We made silly excuses for why certain days were inconvenient. “I have an invitation to my friends’ 35th anniversary in Provincetown the third week of June,” I blurted out. One of Julie’s daughters said, “I’ve committed to a writing workshop starting July 4.” Julie’s best friend, Jenny, had plans to travel, too. “Please don’t let Julie schedule it before the 25th!” Jenny texted me.
Julie chose Friday, June 30. She gave us four days’ notice, which allowed for time to complete her obituary, finalize the guest list for her memorial and create the program. The day before, my brother handed me a draft of the program for one last copy edit. I’d expected her date of death to be left blank; after all, we could fill it in later. Or maybe I still hoped for a miracle that would make all this preparation unnecessary. But right there, on the program’s cover, I saw dates for the first and last days of her life, her death foretold.
Julie never wavered in her decision, which proved a godsend for the rest of us. That final morning, my sister got up early to write letters to her three girls: her wife and their two daughters. Then she called the insurance company to argue with them about a payment, trying to take one thing off Maddy’s list of to-dos. I heard her say, “I’m doing MAID at noon. I need you to get back to me before then.” That is — was — my sister.
With the sun creeping toward its zenith, Julie took one last walk in her garden, blossoming with hydrangeas, zinnias and some faded irises. Then we twice watched the video Jay had put together for her service — a lifetime of memories condensed into 14 minutes. We took one last family photo, the bookend to hundreds of others, most of them with our Julie in the center. I was confounded by how to pose — a big smile, a little smile, a frown? In looking at the photo now, I think my face looked blank, which was pretty much how I felt.
Before heading upstairs with her wife and daughters, Julie cried for a moment and said softly, “I don’t want to leave you.” A few minutes later, my sister made herself comfortable on the Ultrasuede sofa in her office. Maddy prepared the medications, and after they all recited the Serenity Prayer, my sister gulped it in one shot. Within minutes, she was unconscious, in a liminal state between life and death. Maddy gently laid her wife down on the sofa and then asked Jay and me to come upstairs. I stroked her face; I whispered to her how courageous she was to have made this decision. (After all, it’s commonly said that we lose our sense of hearing last.)
I also vowed to keep my promise to tell this story, a brother’s last act of devotion to a sister he loved beyond all measure.
About a decade ago, Dame Harriet Walter, the 73-year-old star of stage and screen, decided to make a living will. The will, also known as an advance decision, informs family, carers and doctors of a person’s wish to refuse specific treatments should they become too ill to communicate those choices. (It stops short of requesting help with end of life; euthanasia and assisted suicide remain illegal in the UK.) But, when it came to actually completing the details of her living will, Walter always found something else to do.
“I had the will sitting in my filing cabinet for about three or four years before I got round to it,” says Walter, who made her name in the theatre but has recently had eye-catching roles in the TV shows Succession, Killing Eve and Ted Lasso. “It’s not something you really want to look at, it’s not something you want to think about. But it will be good to know that there’s something in place that you could use when the time comes. Then you close that filing cabinet.”
Walter’s reluctance is common. It came up earlier this month in the Observer in Rachael Stirling’s heartbreaking account of caring for her mother, Diana Rigg, in the final months before her death from cancer in September 2020. “As a nation we never talk about dying, or what it really looks like,” Stirling wrote, “even though it is one thing we’ve all got in the post.”
Stirling’s article has prompted renewed calls to change the law on assisted dying. The debate was picked up by the 83-year-old TV presenter Esther Rantzen, who is undergoing treatment for stage-four lung cancer and has joined the Swiss clinic Dignitas. Rantzen would like to see a free vote in parliament on assisted dying, telling the BBC it is “important that the law catches up with what the country wants”.
Walter, who has not previously spoken on the subject, first started thinking about assisted dying when she made the 2009 BBC film A Short Stay in Switzerland. The drama was based on the true story of Anne Turner (played by Julie Walters), a British doctor who had an incurable brain disease, progressive supranuclear palsy, and in 2006 became the 42nd Briton to end their life with the help of Dignitas. Walter played Clare, a fictional friend of Turner; her character vehemently opposed Turner’s decision because of her religious conviction that life is sacred.
“I found it really difficult to get behind that as an actress,” admits Walter. “And it did make me think: what is it that’s sacred about life? Does it continue to be sacred when it’s absolutely agonising and hopeless? And you’re in the last six months of your life anyway? You are just hurrying on something that’s going to happen anyway.”
Walter with Ralph Fiennes in Ivanov at the Almeida Theatre, London, in 1997.
Walter returned to assisted dying in the 2020 Sky Atlantic satirical drama The End. This time, though, her character was on the other side of the fence: a passionate supporter of the right to die. “I hasten to add that it’s easy to act something, it is very different when you come to face it in real life,” says Walter. “But one of the things that came out of these dramas I was involved in is that knowing the possibility is there doesn’t necessarily mean you’re going to use it. It’s just a comfort to know that you could. And it’s long overdue to have a proper conversation about this, a national conversation.”
The last time there was a vote in the Commons on assisted dying was in 2015, when MPs overwhelmingly rejected a change in the law by 330 votes to 118. More recent polls, though, seem to suggest a shift in public attitudes: According to an Ipsos Mori poll in July, 65% of people in the UK believe it should become legal for a doctor to assist an adult of sound mind with less than six months to live to voluntarily end their own life, subject to high court confirmation. Advocates point to demographic changes, with a quarter of the UK’s population estimated to be 65 years or over by 2050. “I feel that the legal and political system needs to catch up with the public mood,” says Walter, “because people are increasingly aware of, or have connections with, people who are in this position.”
Eventually Walter, who lives with her husband, the American actor Guy Paul, in west London, couldn’t put off filling in her living will any longer. “There’s a certain point at which I wouldn’t want to be revived,” she says. “And I just said that if I could no longer communicate then I wouldn’t want to go on. Loss of speech yes, but blinking or any form of communication. If I couldn’t make my feelings known, I wouldn’t want to live.”
It wasn’t easy, Walter recalls, but she feels a sense of relief that she faced it down. “We’ve got to think about it, because it could happen to any of us,” she reasons. “And if we saw that there was a law that helped, I think people would mostly feel less frightened in the end rather than more.”
Death is a taboo subject in American culture. So much so that, by the time someone close to you passes, you may not have any idea how they want their affairs handled.
But according to death doula Alua Arthur, getting an “end-of-life plan” in place can make death easier to think and talk about at any age. And this plan goes far deeper than the financial and logistical items covered in a will.
Here’s how Arthur recommends making your end-of-life plan and the benefits it can bring for a well-lived life.
What is an end-of-life plan?
Arthur thinks everybody should have an-end-of-life plan. While the exact contents will be unique to each person, here are some items she recommends including:
Your end-of-life care: When you’re nearing the end, what kind of environment do you want to be in? Where would you like to be? What type of food do you want to eat? How do you want to feel? This will help your loved ones make the best decisions for you if you’re physically unable to.
Your body & funeral service: What do you want done with your remains? Do you want a funeral? What does it look like? Any places you’d prefer not to have it? If you don’t know your options, consider looking into it. There are so many innovative and beautiful ways to handle remains you probably haven’t heard of yet.
Your possessions & financial affairs: This tends to be covered in a will, but can be included in your end-of-life plan as well.
Your pets & non-relative dependents: Are there any living beings you take care of that you want to pass on information about but may not be included in your will? If so, add a plan for them in this document. Consider pets here if you have any.
Now, it’s important to remember that these end-of-life plans are meant to change and evolve with you.
If you learn about a new burial service that interests you, add it to the document. If you went to a funeral and saw something you wouldn’t want for yourself, put it in your document. This way, when you do eventually pass, your loved ones will know it’s up-to-date with your honest wishes.
Why are end-of-life plans important?
For those who prefer to shy away from discussions about death, don’t worry—you’re not alone. But here are a few reasons that making an end-of-life plan and talking more openly about death can actually help us live healthier lives:
1. Too often, we see death as “a failure”
Shoshana Ungerleider, M.D. has a unique perspective on death as an internal medicine physician and the founder of End Well–a nonprofit on a mission to change how the world thinks about the end of life.
Ungerleider says some of the strong distaste toward the topic stems from how Western medicine views death in a hospital setting. “It’s partly because we as doctors see death very, very often as a failure. And we try to do everything we can to avoid failure in medicine,” she explains.
But in the end, she notes, “Death keeps us awake to our lives.” By pushing thoughts of death away, we can actually increase the power they have over us. Making an end-of-life plan is a way to accept death for what it is and take away some of the stigma that surrounds it.
2. Speaking about it can help with death-related anxiety
On an individual level, death can be scary and anxiety-inducing to think about. The unfortunate truth is that we don’t control how we pass or when. But, what you can control (at least a little bit) is how your death is handled, hence the freeing effect of the end-of-life plan.
Knowing this part of the equation is sorted can actually bring an element of known to the unknown, potentially easing death-related anxiety.
3. A plan can help support your loved ones when the time comes
Having these big questions answered ahead of your death is a service to your loved ones who will care for you in your final days. By taking some of the work off your loved ones’s plate through pre-planning, you’ll help them grieve your passing with just a bit less stress related to logistics. Think of it as paying it forward to those who will care for you during this time.
Though it may not be accessible for everyone, working with a death doula could also prove helpful for you and your loved ones (and you can even request that in your end-of-life plan).
4. Acknowledging death can make you more present
Your considerations around death don’t need to stop once you wrap up your end-of-year plan. Instead, Arthur strongly recommends that everyone start talking about death more often. This doesn’t need to involve serious sit-down conversations. In fact, sometimes easing into it with casual topics can take away the initial shock and overwhelm.
Having more casual conversations around death can improve your quality of life and presence. Ungerleider notes that her colleague Lucy Kalanithi, M.D., often says that living and dying aren’t separate things. We’re doing both at the same time. This perspective can make death a bit less scary and unfamiliar since it reminds us that while we are living every day, we are dying every day, too.
Death keeps us awake to our lives
Making an end-of-life plan probably won’t make you completely fearless when it comes to death. But there’s a chance that it can ease your anxiety around it a bit, as well as provide support to your loved ones.
5. Don’t be afraid to ask for help
If you feel strong anxiety or fear when you think or speak about death, consider reaching out to a therapist for help. They can guide you through difficult emotions that come up and process any potential trauma that could be impacting your fear of death.
The takeaway
Death doula Alua Arthur recommends making an end-of-life plan that includes preferences related to remains, funeral services, how you’ll be cared for in your final days, and other important considerations that may not be covered in a will. If you find the topic of death uncomfortable to talk about, you’re not alone. However, getting familiar with your wishes and desires may benefit your mental health and presence, and help those around you in the long run.
