As Ellie, 26, sat at the foot of her grandad’s bed in the days before he passed, she knew in her heart that he was already gone. “He wasn’t going to come back,” she tells Refinery29. “Whoever was left struggling on the bed wasn’t the man I’d grown up loving.”
After her grandma passed away last year, Ellie knew her grandad didn’t have long left. The first time she visited him after he fell ill for the final time, it hit her that this was it. “He’d been ill before but he always had my grandma by him to help him power through,” she says. “This time, though, we were watching him fight an uphill battle that he didn’t want to win.”
Although he was still alive, Ellie was already grieving for her grandad.
Anticipatory grief refers to feelings of grief that occur before an impending loss. This can be anything from a failing relationship to the inevitable death of a loved one due to old age or terminal illness. Research has shown that it’s similar to conventional grief, although one study found that it was more likely to be associated with higher intensities of anger and loss of emotional control.
“Anticipatory grief starts as soon as your loved one’s life is put into question,” explains Maria Bailey, a bereavement counsellor and founder of Grief Specialists, a collective of grief experts dedicated to supporting anyone experiencing loss. “When you know your loved one is going to die, it’s like death by inches – you start losing little pieces of them, rather than the whole of them at once.”
In this sense, it’s almost like microdosing grief. On the outside, everything is normal, especially when your loved one is still somewhat healthy. But then, out of nowhere, it hits you. It’s like an ice pick headache: a sharp, sudden, stabbing sensation that hints at what’s to come. Suddenly, all those happy moments – birthday parties, Christmas dinners, time spent together – are blemished by the inevitable.
What makes it all the more difficult is that anticipatory grief feels impossible to talk about. Ellie struggled to open up to anyone about how she was feeling. “My family were obviously in the same boat as me but they were either running off fumes from staying by his bedside 24/7 or in denial that he was passing,” she says. “It felt wrong confiding in my friends that I was grieving the loss of someone who was still alive.”
Carolyn Gosling, a grief recovery specialist, says this is because we’re not socialised to deal with grief in general so we aren’t tuned in to its nuances. “The expectation is that grief only really applies when you’ve already lost something or a death has happened,” she tells us. “So when you anticipate loss, it’s even more alien.” Even if you are accustomed to death and grief, nobody can prepare for how it feels to grieve someone who’s still alive.
“It was difficult,” says Ellie. “There’s a weird layer of guilt – sometimes I’d think I was jinxing his life, even though I knew deep down that wasn’t the case and it was going to happen whether I came to terms with it or not.”
When you’re dealing with anticipatory grief, you’re not just grieving your loved one, you’re also grieving all of the moments they’re going to miss: watching you walk down the aisle, for example, or helping you decorate a new home. Knowing that they won’t be there to hold your hand in times of crisis can feel selfish but these feelings are completely normal.
It felt wrong confiding in my friends that I was grieving the loss of someone who was still alive.
EllIE, 26
Gosling calls this a loss of hopes, dreams and expectations, which causes you to grieve what you thought would be your reality. Bailey suggests asking your loved one to write a letter that you can come back to on those big days so they still get to be part of the occasion.
Then there are practical concerns, such as life insurance, wills and funeral preparations. Bailey says it’s important to embrace these conversations and make sure your loved one knows that everything will be taken care of. “That’s what they’ll need,” she says, adding that having these conversations before someone dies can save a lot of added pressure afterwards.
Gosling also warns of turning to unhealthy coping mechanisms such as substance misuse or, in 22-year-old Eliana’s case, disordered eating. After a stem cell transplant, Eliana’s dad developed graft versus host disease, which caused the new cells to attack his body, and was taken to hospital.
Eliana flew out to America to be with him in early November, three months after he fell ill. Just after she arrived, she was told he had only two days to live. But after being taken off his medications, Eliana’s dad made a small recovery and managed to live for another three weeks. It was a rollercoaster: Eliana went from reconciling herself to her father’s death to having hope that he would survive.
Fraught with anxiety, sadness and a confusing cocktail of hope and hopelessness, Eliana couldn’t bring herself to eat. “I was so triggered,” she says. “I lost so much weight.” Then came the guilt – that she hadn’t spent enough time with him – followed by the bargaining. “I basically went through the stages of grief but before he’d actually died.”
It’s like being stuck in emotional limbo, especially when there’s still hope. Yet it’s important to accept how you’re feeling. Bailey suggests labelling your emotions and allowing yourself to sit with them before putting them behind you. Although it can be difficult, she adds, it’s important to talk to someone about what you’re going through, whether that’s a trusted loved one or a counsellor.
When Eliana’s dad did pass away, her anxiety subsided and she was able to eat again. “I was just so exhausted,” she says. Ellie felt the same. While the post-death grief hit her like a train, Ellie says there was also an overwhelming feeling of relief that her grandad was finally at peace.
This is one benefit to having a long goodbye: not only does it give you time to reconcile yourself to your loved one’s death but it gives you the chance to leave nothing unsaid. “This is one of the main reasons why people get stuck in their grief,” says Bailey. “They haven’t had the chance to say goodbye or tell somebody they love them, say thank you or apologise for something they did 10 years ago. So use your remaining time well.”
This is something Eliana was grateful for. She says it’s important to take pictures with your loved one, even in their last days, and spend as much time with them as you can. “Even if they’re not in the best state of mind, even if they’re sleeping, just sit by them. Talk about all your favourite things and reminisce. Watch them, hold their hand, because you’re going to miss that so much when you can’t do it anymore.”
The loss of a spouse is one of the most stressful events you can experience in your lifetime. It’s something that is too painful for many people to think about, much less speak openly about. Most everyone knows someone who’s lost their partner, sometimes after a long bittersweet goodbye. And, often it happens suddenly. When death happens unexpectedly in your circle, it causes a visceral response. You feel it. It’s life’s reminder of your own mortality. It allows you to have empathy, to put yourself in the surviving spouse’s shoes, what if that were my husband, my wife? A thought that can be so uncomfortable to think about, you brush it away and quickly move on thinking about ways you can show support to your grieving friend. Casserole? Flowers? A phone call?
No one wants to think it will happen to them. It’s human nature to have compassion for your friend while simultaneously breathing a sigh of relief that it wasn’t your spouse. But, that uneasy feeling in the pit of your stomach is there for a reason. Death is hard, it’s overwhelming both emotionally, and financially. You will never be ready emotionally to lose your partner, that’s a process of healing that requires time to pass. As time passes you’ll slowly adapt to your new normal, and little by little the pain of loss begins to lose its edge. Financially speaking, allowing too much time to pass has the reverse effect.
Dr. John Maxwell said it best: “You choose how you approach life, if you’re proactive you focus on preparing, if you’re reactive you focus on repairing.”
When your spouse passes, you should be focused on repairing your heart, not your finances.
Read on for three action steps to take now, while you and your honey are both living, to protect each other from financial overwhelm.
Action Step One: Take Inventory
Make it a date night. Order a pizza, pour a glass of wine and connect with your partner. Grab a pen and a piece of paper or fire up a spreadsheet. Make a list of your joint and individual assets, accounts, bills, debts, insurance policies, expenses and income sources.
Transparency is key. If you’re ahead of the game and feel that you have a good grasp on the household financial picture, don’t assume the same for your spouse and vice versa. The devil is in the details. This drill is meant to be a dual effort. This is your opportunity to check in with your partner and compare notes. Maybe you never mentioned that you signed up for a monthly recurring Pilates package at $200 a month. Maybe your spouse didn’t think to tell you he opened a Home Depot credit card he’s been using for some extra perks. This inventory session is designed to pave the path for action step two. Taking inventory and sharing it with your partner is not a one-and-done deal. So, consider making this an annual date night.
Action Step Two: Take Initiative
Now that you’ve spilled the beans over a pizza, the next step is to take initiative on a few practical matters. For instance, there is a difference between being a joint account owner versus an authorized user. Consider that Home Depot card you just found out about—as an authorized user you can make purchases using the card, but only as a joint owner can you close the account if/when your spouse passes.
Beyond credit cards, this applies to cell phone providers, loans, and bank and brokerage accounts. Take the initiative, and verify that you and your spouse have joint ownership of your important accounts. When it comes to your liquid assets, money in the bank or brokerage accounts, adding the letters “TOD” transfer on death for brokerage accounts, stocks, bonds and other investments or “POD” payable on death for checking and savings accounts will ensure that if you and your spouse pass away simultaneously that your joint accounts will transfer directly to your named beneficiaries, skipping the lengthy probate process. Another quick tip to taking initiative is to share not only the passcode to each other’s cell phones, but take it a step further by adding your face ID on each other’s device. If you’re anything like me, most of my important logins, passwords, pins, cherished photos and video memories are on your phone. In the event of an emergency, recalling a password in a panic is stressful; adding face recognition allows for more immediate access and more immediate action.
Action Step Three: Be Intentional
When you are intentional, you choose to make decisions and take action on what’s important to you. Being intentional means being clear about what you want to achieve for a future outcome. That financial inventory you connected on? Be intentional about updating it at least annually, keep a binder or filing cabinet that contains your annual inventory list, important financial documents and any wills or legal documents like car titles and deeds.
A VIP contacts list should be a part of the binder. Include the contact for benefit providers like your employer’s HR department or plan administrator. Remember to add the contact information for any professionals you work with like your financial advisor, attorney, CPA or estate planners. Be sure to include copies of your passports, driver’s licenses, marriage certificate and of course any life insurance policies. Lastly, be intentional about where you keep this sensitive information. Consider sharing your hidden repository with one other trusted adult. Having a digital, password-protected version of these documents is wise.
As much as I’d personally love to believe that all couples in love pass away notebook-style holding hands in the nursing home bed on the same day, it’s unlikely. You will never be emotionally prepared to lose your beloved. Preparing financially for the death of your spouse, while they’re still here to have a say, is truly an act of love.
— Dad shares wisdom after choosing medically-assisted suicide
Eli Timoner
“He was just so weighed down, I think, by feeling like he was stuck, and he couldn’t do anything to help his family — when actually he was providing us with everything, the unconditional love, and the humor and wisdom,” film director Ondi Timoner tells KCRW of her dad.
by Amy Ta
Eli Timoner, who founded one of the fastest-growing airlines in the 1970s called Air Florida, had a picture-perfect life, a successful business, an adoring wife and three kids. Then at age 53, he had a stroke when getting a massage. It left him disabled. He lost his company and most of his money. He never recovered physically or financially. At age 92, he was in such poor health that he wanted to die.
He asked his daughter Ondi to help. In California, an adult diagnosed with a terminal disease, who meets certain requirements, can request aid-in-dying drugs. That’s what Eli Timoner did.
Ondi Timoner then documented her father’s last days. “Last Flight Home” is a remarkable veritè view of friends and family saying goodbye to their beloved husband, friend, father, and grandfather. Timoner is a two-time winner of the Sundance Film Festival’s Documentary Grand Jury Prize – for her films “Dig!” and “We Live in Public.”
Ondi Timoner says she was shocked when her dad suggested using the aid-in-dying drugs.
“He was so independent and … just determined not to be a burden that he would get himself to the bathroom, take sometimes 30 minutes, and sometimes he would fall in that attempt. So it just became untenable. … Doorways weren’t big enough to fit a wheelchair. Just the house couldn’t accommodate him being cared for at home anymore. So it was just too much for him to bear. And he said at one point, ‘I’ve served my sentence,’” she recalls.
She says making this film wasn’t a choice, but an instinct and urge. It was also driven by the fear of losing his voice and personality, and the memory of him. Her therapist told her, “If you feel like you have to film, you need to film.” She also asked her father about it, and he said she was on the right track.
“This film was sort of his final gift to our family and to me. We weren’t making a movie. … The cameras were secondary. They were just documenting dads so we could bottle them up somehow. That was the idea.”
Her sister had asked her to make a video for the memorial they held three weeks after his death. “I don’t think if she had not asked me that, I would have made this movie. Because I don’t know that I would have opened the footage, I think I probably would have just put it on a hard drive. It was too painful, I would have thought. But it was the most beautiful experience to look through this footage.”
Timoner shares that her dad always prioritized their family, but he never expressed shame of being unable to take care of them — because he was driven out of his airline company — until they made the film.
They actually said, ‘What do you think Wall Street will think of a cripple running this airline? We’ll lose everything, you have to get out.’ So he was … forced to resign. And the person who was left in charge drove the airline into the ground a year and a half later.”
During his final days, Timoner set up Zoom calls so people could tell her dad what he meant to them. “He took all that in and that allowed him to have a foundation of feeling very, very loved — to be able to even unpack that shame.”
She adds, “He was just so weighed down, I think, by feeling like he was stuck, and he couldn’t do anything to help his family — when actually he was providing us with everything, the unconditional love, and the humor and wisdom. … Thankfully, I think he started to absorb that and understand that, but he died.”
She says he expressed love throughout his life. For example, when her sister came out as a lesbian around 1989, there was little education about LGBTQ issues, but he reached for her hand and said, “I’m so glad you found love.”
She adds, “He didn’t try to be good. He just was good. … But I think as he neared the end, the veil I discovered between life and death, I think lifts as one dies. And there was a lot of wisdom coming from him from a deep, deep place. … When his grandson … sat down, he said, ‘I just want to ask, how should I live?’ … Then [dad] just said, ‘Respect those you don’t know, and love the ones you do.’ And this man is a great role model. I’m so lucky to have him as a dad.”
It’s hard to ask your doctor what dying will be like. Death is a gut-wrenching reality for everyone. If you have an incurable illness, knowing what to expect as your body shuts down helps you prepare for as “good” of death as possible.
If you have an incurable illness, knowing what to expect as your body shuts down helps you prepare for as “good” of death as possible.
There are similarities to every death, but each dying person’s journey is unique.
Normal signs and symptoms of dying are increased fatigue and weakness, social withdrawal, increased pain, loss of appetite and thirst, and altered mental status.
Changes in the bladder, bowel movements, breathing, and vital signs are also normal.
Facing these changes alone can increase suffering. Seek help earlier in your journey from your loved ones and a palliative care specialist.
A “good” death to most people is free of avoidable suffering and aligns with their cultural, spiritual, and relational wishes as much as possible. To achieve a more peaceful death, studies and experts say preparing helps.
As a hospital nurse, I cared for many dying people during their final hours and walked their families through the process. Every last breath was sacred and unique. The patients who learned about death and talked about what they wanted to develop a realistic plan for their comfort. They were more likely to avoid unnecessary suffering for themselves and their families.
At a point in the dying process, you’ll become unconscious and no longer able to express your wishes. Talking sooner than later about your end-of-life needs empowers your family and caregivers to care well for you when that time comes.
What it’s like to die: signs and symptoms of natural dying
A “natural” death refers to someone dying of a terminal illness or old age. More sudden death due to a traumatic injury will have some of these similar signs but at a more rapid pace depending on the injury. These signs and symptoms occur during the last few months to hours of a dying patient.
1. Weakness and fatigue
As the end nears, it’s normal to feel weak and sleepy, but the timeline differs for everyone. Some become weak quickly while others – often younger or healthier at diagnosis – take longer but then decline rapidly.
It’s okay to sleep as much as you need. Try to time your daily tasks and activities for when you’re more likely to have energy.
As you get weaker, a simple activity like sitting outside, going out to eat, or being with your children can cheer you up, even if it’s exhausting. But there may be a point where you simply can’t do it anymore.
Be honest with your loved ones and caregivers about how you’re feeling. Rather than push yourself too hard, be willing to ask for help when your muscles become too weak to move on their own.
2. Social withdrawal
As you progress toward death, you may feel less social. It can be hard to tell this to your loved ones, especially if you’re from a culture or community that many people want to visit. But it’s okay to let them know if you want fewer visitors. Try your best to explain how you feel, assuring them it’s not their fault.
At the end of life, some people want to be surrounded by friends and family instead of becoming less social. Let your loved ones know if you enjoy their visits.
As you feel more withdrawn and weaker, consider the remaining important things you wish to say and try to have the courage to say them before it’s too late.
3. Pain
Your pain may increase as your disease advances or your joints stiffen, but no one should suffer needlessly. Medications, hospice care, and alternative health treatments all help ease your discomfort.
It is difficult for your loved ones to see you hurt. Be sure you talk thoroughly with them about how you want to manage your pain. You may want enough medication to ease the pain while also staying awake with loved ones. Or, you may want the medicine to help you sleep painlessly for much of the day.
Take oral pain medications 45 minutes before the pain becomes intense or before you have an activity planned. Use consistent language to describe your pain so loved ones and caregivers understand when it changes. Make a list of questions about pain management to ask your hospice nurse during their next visit, such as when to call them about increasing pain and how best to take your pain medication. Consider alternative treatments like acupuncture, massage, music therapy, or Reiki.
As you near death and can no longer talk, your loved ones and medical providers will watch for nonverbal signs of pain like grimacing, moaning, stiffening, resistance when they try to move you, calling out, restlessness, or labored and uncomfortable breathing. They can give you medications for any signs of discomfort.
You can trust that with medical help like hospice, you’ll be more comfortable and peaceful.
4. Loss of appetite and thirst
Nearly all patients lose their appetite as they near the end. Your brain will not trigger hunger and thirst sensations during the final stage of death, so you may have no desire to eat or drink.
Eating and drinking less – or not at all – is a normal part of dying as the body stops using nutrients like it did when it was healthier. As a result, your hospice nurse won’t advise trips to the hospital for intravenous (I.V.) fluids or artificial nutrition.
Your loved ones might fear you’ll “starve to death” and plead with you to eat or drink, believing it will increase your comfort and strength. Remind them with kindness that you’re not uncomfortable. When your body is dying from an incurable illness, it will continue to shut down no matter how much you eat.
Eating or drinking less may make your mouth dry and uncomfortable, however. You or your loved ones can apply lip balm and mouth moisturizer. You can also lightly moisten oral sponges with water to moisten your mouth.
5. Dreams, visions, and hallucinations
In the final days and hours, you may become less alert, drifting in and out of consciousness. Many dying patients have dreams and visions of lost loved ones, God, or other spiritual realities. You may experience hallucinations or a surge of energy just before you die. Some feel an increased awareness of death as it gets closer.
For most people, this delirium or altered state of consciousness is peaceful and not distressing.
However, if you become agitated, medications like haloperidol can restore your comfort. Caregivers can also check for other problems like pain, constipation, bladder infections, or side effects of medication.
If you experience such symptoms when you are still awake and alert, it can be helpful to talk with loved ones or care providers like end-of-life doulas and hospice nurses, counselors, and chaplains.
6. Bladder and bowel changes
At different stages during the dying journey, you may notice bowel and bladder changes.
Your urine may change color due to organ failure, and you may urinate less. Depending on your disease process, you might lose control of your bladder – also called bladder incontinence.
Incontinence can cause skin breakdown for bedridden patients. If this happens, some medical providers recommend a urinary catheter if they increase patient comfort while protecting their skin. A catheter may also be recommended if your bladder is retaining urine.
Constipation is not uncommon at the end of life. Your medical providers should counsel you on taking stool softeners and laxatives for constipation. These should be stopped or decreased, however, if you stop eating.
It may feel awkward, but it’s always best, to be honest about these symptoms with your caregivers.
7. Skin changes
In the later stages of the dying process, your skin may change in temperature and color as it stops functioning. During your final days, your body will move blood away from your arms and legs while it shunts it to the vital organs. These changes can make you feel cold and make your skin look pale, gray, or blotchy.
Some people, however, feel warm and flushed or develop a slight fever. A cool cloth on one’s forehead may ease the heat.
Keep your loved ones informed when you get too cold or hot. This helps them understand your body’s trend to care for you when you’re unconscious. Heated blankets and heating pads can be helpful but can also burn your skin if ignored.
8. Breathing changes
When people are within days to hours of dying, their breathing changes. Sometimes it’s very slow and regular with only a few breaths each minute. For others, it’s slow and irregular where they may breathe three breaths and then wait 45 seconds to take another breath.
Some patients breathe very fast, then slow down, pause, breathe fast again, and so on. This is a normal end-of-life breathing pattern called Cheyne-Stokes respiration. It can occur when the brain forgets to trigger breathing.
When you reach your final breaths, agonal breathing is common. Agonal breaths look like the patient is trying to gulp for air and can be distressing to loved ones if they’re unfamiliar with it. Nurses sometimes nickname it “guppy” breathing because the mouth opens wide and the jaw and shoulders work to pull oxygen into the lungs.
When the diaphragm and other muscles weaken, phlegm builds up in a dying patient’s airways, making a rattling sound when they breathe. This is known as the “death rattle.” If this rattle occurs to you, it will not feel uncomfortable, but the sound can be distressing to loved ones. Your caregivers may reposition your body or your neck to reduce the rattle.
If a medication like atropine is given at the beginning of your final days, it may improve the death rattle later when it occurs in your final hours.
These breathing changes – even agonal breathing and the death rattle – rarely, if ever, cause discomfort. They are a normal part of dying and occur when you are in a relaxed and unconscious sleep.
If your breathing does look painful, very labored, or very rapid, your loved ones or nurses will give you a medication like oral or I.V. morphine, because the labored breathing may be a sign of pain. Morphine is typically the end-of-life pain medication of choice because it not only dulls the pain but also eases your breathing.
You may want to continue wearing oxygen as you reach the end. In most cases, it will not lengthen your life significantly during the final days, but some people find it comforting.
9. Heartbeat and blood pressure changes
Changes in your heartbeat and blood pressure will also occur. Your heart rate may become irregular and eventually weaker as your heart fails. These are normal changes and are not treated at the end of life. To de-medicalize the dying process for the patient and their loved ones, most medical providers will stop monitoring vital signs during a patient’s final days.
Facing death takes profound courage. If you have an incurable illness and know death approaches, gather your loved ones and your medical team around you. Consult with a palliative care specialist sooner than later to help you through the journey. Be sure to talk openly with them about tough topics such as what it’s like to die and how they can help make you comfortable.
A year after being widowed, Laura Horn began volunteering in a hospice, sitting with people who were about to die. She soon realised she could do more for them …
Laura Horn has found what she calls her end-of-life career, “a vocation to last the rest of my life”. In her 60s she decided to train as a registered nurse, specialising in hospice care. “I’m a brand new nurse but that’s not what’s important,” she says. “I’ve had life experience.” After Margaret, her wife of 20 years, died “suddenly and unexpectedly”, Horn understood she had to make a change. She had been thinking about volunteering in a hospice, after her mother and both parents-in-law were given palliative care. Following Margaret’s death in January 2017, Horn applied to the Zen Hospice Project in San Francisco, which trained volunteers to sit with the dying. They told her: “Wait a year. You can’t do it right away.”
Looking back, she says, they were right. “You can’t jump into something new until you have grieved appropriately.” She had “good therapy” and did what she calls “walking grief – I mean, I walked everywhere”. A year later, she reapplied. “They said, ‘Why do you want to do this?’ and my first sentence was, ‘I know loss.’”
As well as Margaret, she had outlived her parents, her parents-in-law and her brothers. They both “died of substance abuse, one of a heroin overdose, and the other of long-term substance abuse. That, I’m sure, was part of my motivation,” she says. “That kind of pain can also lead to openness and joy, and that’s what I’ve discovered.”
Volunteering was “a truly transformative” experience for her and Horn realised she wanted more. “I thought, I want to do the nursing part too.” As an undergraduate, she had studied biology, and her early work was in public health before she switched to education research. Most of her career was spent “trying to determine what helped students succeed in college and beyond. But I always had the sense that I would circle back to the world of health,” she says.
At 63, she enrolled at one of the very community colleges whose impact she had been researching, to take the prerequisite courses – anatomy, physiology, microbiology, pharmacology. From there, she applied to nursing school at 65, on an accelerated one-year programme for graduates.
The intensity was staggering. “I was devoting every waking hour to studying and my clinical work,” she says. The friends who had supported her after Margaret’s death, and lived nearby in Berkeley, California, cooked for her three nights a week. Horn would visit for an hour, then leave to study. “We called it ‘catch and release’,” she says. Her two children with Margaret had left home but were supportive. When she graduated, one of her friends made a little sign out of brightly coloured paper – “It’s never too late” – and stuck it to the back of her mortarboard.
In some measure, Horn has put herself back at the heart of the storm, in a place of death and loss, which she occupies for three shifts a week at the hospice where she works in Oakland. How emotionally taxing is her new career?
“We are not part of the family so there is that distance,” she says. “We are here with you at this important time. We are here to normalise the experience and we teach family members what to look for, and not to be scared. It’s emotionally taxing but not overwhelming.”
Now 68, Horn has noticed her own attitude to death evolving. “I think I have relaxed around it,” she says. “After seeing all I have about death I’m not so scared of dying. I have a limited amount of time left on this Earth and I will try to make the most of it. And not be too terrified.”
Most of all, she has realised that palliative nursing care is “a reciprocal relationship with patients and families”. She hopes “to find real balance in that, to learn from them as they learn from me. If I’ve learned nothing else, we can’t live a full and meaningful life without deep relationships. And that’s what I’m hoping for.”
— Study finds doctors, families avoid saying ‘death’
By Paul John Scott
A new study has found that conversations between families and physicians who treat critically ill infants avoided direct language in 92% of all references to death and dying, but that the two parties did so through different linguistic evasions.
The study, conducted by Duke University researchers between September 2018 and 2020, analyzed 68 recorded conversations between physicians and 24 participating families of infants hospitalized for neurologic conditions in an intensive care unit.
It was published in the journal JAMA Network Open.
“This study was really inspired by a recognition that it can be hard to talk clearly and directly about challenging, high-stakes topics,” said Dr. Monica Lemmon, an associate professor of pediatrics and population health sciences at Duke and lead author of the paper. “We aimed primarily to characterize the way death is discussed.”
While it is commonplace to use softer language for death and dying in day-to-day conversations, in order to minimize confusion, consensus guidelines within medicine the paper noted “emphasize the importance of clear communication, including avoiding euphemism use.”
In the new study, researchers found 33 out of 68, or 45% of all family meetings, involved a discussion of death. There were 406 recorded references to death within those meetings — 275 made by clinicians, and 131 made by family members. Of those, the words “die,” “death,” “dying” and “stillborn” were used just 15% of the time by family members, and 5% of the time by physicians.
“What was most striking was the direct use of the words themselves … were used quite rarely,” Lemmon said. She said that “families often used colloquialisms or common phrases to reference death,” while “clinicians instead most often used medical jargon, which may be less clear to people who aren’t medically trained.”
Physicians used medical jargon 43% of the time when discussing death during the study, which included as examples terms for death such as “event,” “code,” “episode,” “arrest,” or “irretrievable drop” in heart rate.
Families preferred colloquialisms 34% of the time, the paper found. These included phrases such as “pass away,” and “not make it.” The paper identified two other forms of euphemisms: expressions referring to survival — like “don’t live,” or “not survive” — and the use of pronouns in place of death, such as “it,” “this,” “that” or “something.”
In an accompanying commentary, a trio of pediatricians from the University of Minnesota Medical School placed the findings within a larger problem described as “jargon oblivion” in medicine. For lead author Dr. Michael Pitt, the new study provides physicians with a framework to better understand what that looks like in practice.
“I think what this study adds is actual proof to what we expected,” he said. “Which is that we tend to avoid these difficult words — death, dying — at the bedside during important conversations with families. They elegantly quantified that in a study where they recorded and transcribed these transcripts, and showed that providers rarely used these terms.”
The harm, Pitt says, is that families may need to hear the word death to understand that death is what is being discussed.
“They hear ‘we did everything we could’ (and) they might want to reply, ‘OK, get somebody else to do something, then.'”
Pitt recalls that when his father recently died, “the nurse called my mom and said, ‘He’s no longer with us,'” he said.
“She initially thought that meant that he’d been transferred, or gotten lost … you’re having the most serious conversation of a family’s life, yet they may not understand what you’re saying unless you use clearer language.”
Dr. Brenda Schiltz is a pediatric critical care specialist at Mayo Clinic who has had numerous conversations with families in which she was required to discuss the actual or possible death of a child. “I think it’s a good paper,” she says of the Duke study.
“It wasn’t surprising at all, to be honest,” she adds. “We teach trainees all the time about when we’re breaking bad news … to be very concrete, to use the word ‘death.’ But even when do all those teachings, it’s a hard thing to tell somebody. It’s a very hard thing to tell somebody.”
Schiltz says that while clear communication about death is critical, it often is a shift in thinking for physicians.
“Not only is it hard,” she said, “as a physician and everybody that’s on the medical team, we’re trying to save these babies. No one wants to feel as if we lost that battle. We’re always fighting. We’re always trying to keep hope alive, and try one more thing … It’s tough to admit when, despite our best efforts, we can’t save somebody.”
The study did not look at whether the families studied preferred direct language about death, Lemmon notes, or whether the euphemisms identified produced any confusion in the conversations.
“Some euphemisms might be quite clear to all the parties involved,” she said. “Especially when they’re used by a family member and mutually understood by the clinical team. That said, it’s important there’s a shared understanding of what we’re all talking about, and for this particular study, the outcome of death is something critically important for everyone to be on the same page around.”
We are dedicated to helping our patients, but there are limits to what we can do to help.
A clinic patient of mine was dying of pancreatic cancer. He was as orange as a pumpkin and had an implantable morphine pump for pain. He was in palliative care and hospice, and regardless of medications to help alleviate his symptoms, he was miserable.
His suffering was unbearable. He wanted nothing more than to pass away sooner, in peace, and no longer be in pain.
“‘This is not living,’ he told me. ‘I am just waiting to die.’”
— Kristen Fuller, MD
He voluntarily stopped eating and drinking, refused a feeding tube, and eventually developed severe psychosis. I consulted with his medical team members about offering him “death with dignity,” but they were uncomfortable with this.
He passed away on day 12 by starving himself. His loved ones were beyond scarred by this experience.
The COVID-19 pandemic has exposed the profound tragedy of people dying alone in hospitals, suffering and scared, without the comfort of their loved ones. The pandemic demonstrated modern medicine’s limits in relieving suffering and granting someone peace.
How can we best serve our patients in such situations?
Ways to help patients at the end
Medical aid in dying—also known as death with dignity—is the voluntary act (for both physician and patient) to help end the suffering of a mentally competent adult patient who is terminally ill with less than a 6-month life expectancy (hospice-eligible). The patient has the right to ask for a prescription medication they can self-ingest to die peacefully.
Individuals who want this end-of-life care option tend to be offended when it’s called “assisted suicide,” because they desperately want to live, but are going to die whether or not they utilize this avenue.
The Journal of Palliative Medicine published peer-reviewed clinical criteria for “physician aid in dying”—not assisted suicide.[1] The term “physician-assisted suicide” is archaic and stigmatizing to physicians and patients who have experienced death with dignity.[2]
In the US, death with dignity or medical aid in dying are explicitly distinguished from euthanasia.
Euthanasia, also called mercy killing, is administering a lethal medication by another human being to an incurably suffering patient.[3]
It may be voluntary (requested by the patient) or involuntary. Euthanasia is illegal in the US, but voluntary euthanasia is legal in Colombia, Belgium, Canada, and Luxembourg, and is decriminalized in the Netherlands.
History and guidelines
Medical aid in dying was first passed as legislation in Washington state in 2008, and has since become available for patients in Washington, DC, California, Colorado, Hawaii, Maine, Montana, New Jersey, Oregon, Vermont, and Washington.
Multiple safeguards are in place to prevent cases of abuse or coercion.
The patient must be deemed competent, two physicians must authorize the medication, and there’s also usually a 15-day waiting period between the first and second doctor’s approval before a medication is authorized.
Suppose the patient chooses to take the medication after authorization. They can ingest the pills at their chosen time, choosing the manner and location of their death—one last act of control in the face of a debilitating illness.
What does the AMA say?
The AMA adopted a neutral position on death with dignity in 2019, affirming for the first time that “physicians can provide medical aid in dying according to the dictates of their conscience without violating their professional obligations.”[4]
The Association stipulated that physicians who participate in medical aid in dying adhere to professional and ethical obligations, as do physicians who decline to participate.
According to the Oregon Health Authority, approximately one-third of patients who receive prescription medication to pursue death with dignity in Oregon do not take the medication.[5]
However, they are said to be relieved that they are in control at the end of their life, which helps alleviate some anxiety about potential suffering in their last days. Each patient should be empowered to make end-of-life care decisions based on their unique culture, beliefs, and spiritual values.
“The power should be in the patient’s hands.”
— Kristen Fuller, MD
Hopefully, we can be conduits to give our patients respect, autonomy, and privacy during their last days.
