Mario Fonovic seated in the palliative care ward of the Queen Elizabeth Hospital.
At 55 years of age Mario Fonovic is in the final stages of terminal lung cancer. He doesn’t expect to see the end of 2016, but he is refusing to go without a smile on his face.
Mr Fonovic joined the program to discuss a topic most people dread — death.
“I’ve arranged my funeral right down to my flowers — but don’t bring tissues, bring a tambourine,” he said.
Mr Fonovic said he was neither sad nor scared of his approaching death, and had decided to share his journey on Facebook.
“I can see what is happening to my body,” he said.
“I feel it, I can see it and eventually I will end up in a coma.
“If I can help one person accept death or dying or cancer [I will].
“Just accept what is happening in your life and get on with it, because life is short.”
Looking back on his life, Mr Fonovic said he wished he had only done one thing differently.
“My one and only regret is that as a gay man I never fought to have a child,” he said.
Mr Fonovic said he was lucky to have legally married his partner Sid in a ceremony in California before legislation there changed.
The two plan to move into a newly purchased home together this week and Mr Fonovic is determined he will not die in a hospital.
Too many hospital visits
Mr Fonovic has spent his fair share of time in and out of hospital since being diagnosed with asthma eight years ago.
Being a long-time smoker only made his condition worse.
“Four years ago I coughed … after having one of my last cigarettes and blew a hole in my left lung,” Mr Fonovic said.
His left lung had deflated and he struggled to breathe.
After a week in hospital being treated he was sent home, but within six hours he was back in the emergency department — his left lung had deflated once more.
After another round of treatment Mr Fonovic’s life began to return to normal.
Eighteen months later Mr Fonovic was back in hospital — this time his right lung had collapsed.
“I ended up looking like the Michelin Man as air was leaking into my body,” he said.
He was placed in intensive care and surgeons removed a third of his right lung.
In December 2015 Mr Fonovic visited a respiratory physician to check whether he would be suitable for a lung transplant.
Mario Fonovic having his chest scanned
During a routine scan the doctor discovered cancer.
“I was so happy the day that I went on the transplant list … because I wanted my life back,” he said.
“In one breath I went, ‘yes’ — and then it was cancer.”
Getting on with it
A burst of stereotactic intense radiotherapy saw Mr Fonovic end up with an infection and he was once more admitted to hospital.
“On the second of May [my doctor] shook my hands and said, ‘you are in remission’,” Mr Fonovic said.
“In the following week I went downhill to the point where I couldn’t walk down my hallway.
“I felt like a semi-trailer had parked on my chest.”
Three weeks later Mr Fonovic admitted himself into hospital for a follow-up scan and found out the cancer had returned.
“The PET scan actually showed how bad it is,” he said.
“Not only had I got the cancer back, but it had taken over the whole lung.”
The lymph nodes on the side of his lungs had stimulated the nerves on his spinal cord and were causing him immense pain.
With the firm belief he would not see his next birthday, Mr Fonovic said he decided all he could do was face death.
“You just put your feet on the side of the bed, pull your trousers on and get on with it,” he said.
The cancer may have wreaked havoc on Mr Fonovic’s body, but mentally he is nowhere near finished with life.
Although you might feel like you’re going to die if that bartender doesn’t get you a beer right now, this isn’t exactly a dire situation. What is, however, is if you’re faced with a real life or death scenario. In these cases, most people panic, and not hyperbolically.
That’s why we spoke to seasoned ER guru Dr. Ryan Stanton (and spokesperson for the American College of Emergency Physicians), who faces life or death situations every single day he goes to work. He’ll teach you how to keep cool if you ever find yourself in such a predicament.
Prepare for any situation
You can’t possibly prepare yourself for all circumstances, since we’d all be pretty screwed if some Leftovers-type stuff went down, but first aid training goes a long, long way. Hit up your local fire department, American Red Cross, or hospital for a basic first aid class, which will help you help others when it matters most. You’ll learn how to give non-creepy, hands-only, live-saving CPR that doesn’t require you to basically tongue kiss a stranger, plus super useful skills like what to do when someone’s choking, and how to stop major bleeding. And you can also learn how to shock someone’s heart using an AED machine if they go into cardiac arrest.
Know you don’t always have to do something
Even if you’re prepared, know your limitations, because sometimes doing very little is the best possible thing. Let’s say you come across a car wreck, and someone is badly injured. As Dr. Stanton explains, just being there is good enough: “Sometimes the best thing you can do is call 911 and talk to the person,” he said. “Give them comfort.” If the person in the crash is already bleeding badly, any stress on top of that will make them “more likely to have complications.”
And to further hammer home the point that real life is not like being in a hospital drama on TV, you don’t have to be a hero and save everyone. So if you see someone having a seizure, outside of “keeping [the person’s] airway open,” (a technique you learn in basic first aid!), your job is to sit there and wait for EMS to arrive. “People feel like they have to do something,” Dr. Stanton said. “They try to shove stuff in the person’s mouth to keep them from breaking teeth, or put their fingers in their mouth to keep them from swallowing their tongue. And then you just end up with two people hurt instead of one.”
Prioritize, prioritize, prioritize
When someone comes into the ER with a problem, Dr. Stanton asks himself the same question: “What’s going to kill them first?” Probably that hospital food, says every comedian from the ’80s. But if that person is not bleeding to death and is breathing fine, then Dr. S has bought himself enough time to figure out what to do next.
By way of example, let’s go back to our imaginary person in a car crash: Dr. S says some newbie doctors can get distracted by the victim’s nasty-looking sideways ankle and not realize that they’re also not breathing. Prioritizing allows you to focus on what’s critically important at the moment. You can only do one thing at a time.
Know that sometimes there are no solutions
Everyone knows they’re supposed to calm down in a stressful situation, but it’s not just about taking a few deep breaths (though you should also do that). “Panic has never fixed a problem,” Dr. Stanton said. “Fixing a problem involves working through what you know — if it’s not part of what you know, find the people who know it.” If someone else can’t help, perhaps there are no solutions whatsoever to the super stressful, life-threatening situation you find yourself in. “[Sometimes] you can’t change the current situation,” he said. “All you can [affect] is what’s going to happen now and moving forward. Stay calm and think about what you can do [next].”
Gain confidence through education, experience
ER doctors stay calm while saving lives everyday, and they’re able to keep cool by relying on a combination of experience and education. Now, outside of being that guy in Catch Me If You Can and impersonating a doctor to gain some life-saving experience, first aid training will suffice.
Dr. Stanton put said experience to work one Sunday outside of the ER, when someone passed out behind him in church. While other people were freaking out, Dr. Stanton followed his own advice and everything turned out fine.
Other, non-passed out churchgoers were concerned that the unconscious person didn’t have a strong pulse, and that it was imperative to check their sugar. But Dr. S knew the best move in this situation — make sure the victim was breathing and stay there until EMS arrived. And to stay calm. In a hospital, “if the doctor is calm and relaxed, the whole [ER] is calm and relaxed and everyone does their job.” Be the calm one in any life-threatening situation you encounter, and you’ll do just fine.
Craig Phillips has found that his work as a death doula has given him a greater appreciation for life.
Before he enters the room, Craig Phillips pauses for a deep exhale.
“Just to let everything go,” he says. “And to remember that I’m here for them.”
Until he walks in, he won’t know whom, exactly, he’s about to see. Today it’s an elderly woman in a blue hospital gown. Eyes closed. Jaw dropped open. Breathing loud and labored, but regular.
There is a little green circle by her name on the white board in the nurses’ station. Hospice center code for “actively dying.”
“She doesn’t have anyone with her,” a nurse says. So Phillips goes, pulls a chair up to her bed and introduces himself.
“I’m not here to poke or prod you,” he says softly. “I’m just here to be with you. I’m just here to sit with you.”
The work of a death doula — Phillips’s work, now — is primarily about presence. He is there to ease the passage from this world to the next. And he knows that the most valuable thing he can offer anyone taking that most solitary of journeys is his company. So he sits, silently wishing them peace and comfort.
Especially with patients who can no longer speak, Phillips has learned to slip his hand beneath theirs, palm to palm, rather than rest it on top. This way, he says, “you get an understanding of how well wanted you are.” When his grip is returned, he knows that he is welcome.
Phillips operates alone, but he is part of a growing army of volunteers and professionals who call themselves death doulas. (Some, opposed to that term, prefer end-of-life doulas, soul midwives or transition coaches.) And like the childbirth doulas from whom they draw their name, their mandate is to assist and accompany. Their patients’ experience may be quieter, more sorrowful, but it is no less sacred. Or scary.
As the baby boomers move into retirement, fresh consideration is being given to what it means to grow old, which measures to take to treat illness and, ultimately, how we die. There’s a growing recognition among hospice workers and palliative-care givers that pain management is not enough. That the spirit must be attended to as much as the body. And that the soon-to-be-bereaved need help along with the dying.
It’s out of this recognition that death doulas are emerging. Most say they feel almost inexplicably called to the role. And profoundly touched by it.
A good death
On a sunny spring day in Alexandria, Virginia, 30 women and one man sit in a windowless hotel conference room, having traveled from all over the East Coast and paid $600 to learn to serve as death doulas.
“Our role is to walk alongside” the dying “in their journey,” says Henry Fersko-Weiss, president of the International End of Life Doula Association (INELDA), one of several organizations offering certification in the field.
The weekend-long training will cover the best ways to touch a dying person, when to use aromatherapy and guided visualizations, strategies to relieve overburdened family members, how to organize a “legacy project” to help capture the patient’s life, assisting at the moment of death and helping loved ones process their grief in the weeks that follow.
On the first morning, Fersko-Weiss, a social worker who worked with hospice facilities for decades before creating an end-of-life doula program in 2003, asks each of the students to recall a death that affected them. How it smelled and looked and felt. How it shaped their concept of what constitutes a “good death.”
One woman talked about her daughter’s stillborn baby.
“That was the hardest hurt I ever felt,” she said. “I didn’t understand how you could take a baby who was full-term.”
Fersko-Weiss nodded and observed that she may be able to transform her pain into something that could aid dying patients and their families.
“If we can touch that place of angst and anguish and despair,” he said, “it may help us to be more present to other people experiencing it now.”
Later, the prospective doulas talk about their reasons for coming. Several had had negative experiences with the death of a close relative. A few were birth doulas who wanted to assist with the exit from, as well as the entrance into, life. One woman had suffered a brain injury and a near-death experience. All said that they wanted to be of service in a way that would make this final transition somehow better for others.
They will be called upon to fill all kinds of roles, Fersko-Weiss told them. Sometimes patients may need help with physical care; other times, families will need assistance with errands or household chores. In all cases it will be a doula’s job to listen, without judgment, to honor the experience of both the dying person and their loved ones, and to facilitate meaningful interactions between them.
“As a doula, it’s important to encourage people to say everything they need to say,” Fersko-Weiss explains, “so that they don’t look back and really regret it.”
Beautiful souls
Craig Phillips’s path to end-of-life doula work wasn’t straight, but he thinks he was always inching toward it. He grew up in Wilkes-Barre, Pennsylvania, next door to a cemetery that served as his playground. In college, he had a chance meeting with Elizabeth Kubler-Ross, the famed psychiatrist whose groundbreaking work shaped our modern understanding of death. And all through his life, Phillips has had an intense awareness of his own mortality.
At 61, he has the look and presence of a yogi, but he spent most of his adult life in the corporate world. Several years ago, his sister called, saying that her ex-husband was suffering from advanced ALS and living in a facility very close to Phillips’ Baltimore home. So Phillips went to see him. And kept going, two or three times a week, for the last 2 1/2 years of the man’s life.
“I’d bring him flowers,” he recalls. “I’d tell him stories. I’d take oil over and rub his feet, stuff like that. Just devoted myself to him. And it was a beautiful thing.”
A man in Phillips’ running club mentioned volunteering as a death doula, so when he retired last fall, he linked up with Gilchrist Hospice Care, which serves more than 750 patients daily in the Baltimore area and established its own end-of-life doula program in December 2009. It has since grown to more than 150 volunteers.
After 20 hours of training in January, Phillips spent a morning shadowing a mentor doula at Gilchrist’s facility in Towson.
“We walked into a patient’s room, and she said, ‘Isn’t this person beautiful?’ I could see that they were. And she said, ‘Yes, all my patients are beautiful,’ ” he recalls. “You walk into a room and there’s someone there with their mouth open, looking very near death. Perhaps no teeth in their mouth and a three-day beard or whatever. And I look at these souls and they’re beautiful. It’s the oddest thing. Their guard is down. They’re just who they are in their most real, beautiful state.”
Phillips has helped long-term-care patients communicate with a letter board and even washed a dog for one family. On his weekly visits to an elderly man who was still alert, Phillips brought videos of the patient’s favorite big band performances.
But with many patients, Phillips just sits, quietly meditating and sending good wishes. He tells them that they are safe. And that they are not alone. One woman was unable to speak, but when he said goodbye after three hours, “she mouthed the words ‘Thank you’ and held out her hands like I was dear to her,” he says.
The work has also produced an unintended side effect. It has pushed Phillips’ awareness of mortality even further to the forefront of his mind.
And happily so.
“The more immediacy, for me, that I have of this,” he says, “the more appreciation I have for every day, every minute.”
It is illegal to help someone kill themselves in Malta. But what if someone is dying in great pain?
It is illegal to help someone kill themselves in Malta. But what if someone is dying in great pain?
Opioids usually administered in these times are sometimes not enough to stop the agonal stage of death. Agony comes from the Greek word ‘to struggle’. The process of dying, as seen by an observer, is that of a struggle. The stage right before an older person dies is often accompanied by disorientation, struggling to breathe with long pauses in between loud, laboured breaths – called Cheyne-Stokes breathing.
Sometimes a death rattle is heard in the breathing when there is liquid in the lungs. Sometimes the person may start convulsing. This agonal process is eloquently described in the Tibetan Book of the Dead. This is not the way we want to die.
In one study looking at what people said is their ideal way to die, Gilbert Meilaender from Valparaiso University in Indiana suggested a one-word answer: Suddenly! The idea is to live as long as possible at the peak of our vigour and then, when the time has come, to die quickly and painlessly. But this is not the way we die.
With our advancing and encroaching technology, it is more likely that dying will become a more protracted affair despite our wishes. Surprisingly, when we try and hasten the process we, as a society, have responded by punishing those who are trying to help us achieve a painless death.
In the US, one of my neighbours, Sharlotte Hydorn, before her death in 2013, gained a measure of notoriety by offering to mail you, for only $60, a package containing GLADD exit bags – Good Life and Dignified Death. The kit included a plastic bag, medical tubing, two canisters of helium and instructions on how to commit suicide – by placing the bag on your head and filling it with helium, which deprives the body of oxygen. The body does not know it is being denied oxygen since the helium mimics the oxygen molecule. You die peacefully. In the US, more than a quarter of us will likely die in an emergency room, our final departure looking more like a chaotic medical soap opera. Our death will be seen as another medical failure. For the majority of us, this is not what we want or what we deserve.
In Europe and the US, hospice care is gaining ground as the gold standard for end-of-life care. The Malta Hospice Movement is today caring for over 1,000 patients and their families. However, Malta Hospice, as most hospice services, is used by too few people. And when these services are used, they are used too late. The result is that most older adults still experience widespread distress in the final stages of life.
The result is that we deal with dying underhandedly. In hush hush tones we conspire to give the dying person a good death. In Malta, Jurgen Abela from the University of Malta’s department of family medicine conducted a survey of 160 doctors. The results are revealing. One in seven doctors were asked by their patients to help them die. Despite this, nine out of 10 would refuse such requests for moral reasons – since a majority were Catholic and this was important to them – despite half of these same doctors accepting the right of individuals to hasten their death. Such schizophrenic response harbours a sense of bigotry.
The religious fervour to curtail euthanasia has not slowed the growing number of states that have legalised physician assisted death. With four US states and four countries that today openly and legally authorise active assistance in dying of patients, the list of states/countries is growing.
There is nothing absolute in these situations. Physicians cannot determine with infallible certainty that someone is going to die, sometimes the medication used does not work as intended, or is delayed, the process of injecting a person with enough opioids to kill them is not family-friendly and it is killing without consent. These are all valid criticism that pose moral challenges.
If we look at how physicians die, what we find is that a majority of them do not go for invasive treatment if they know that it is unlikely to improve the outcome. They chose quality of life over quantity of life and self-medication is high. It takes a special person to go through with euthanasia.
In the state of Oregon in the US, only a small fraction goes through physician-assisted-suicide. In 2013, a total of 71 people went through physician-assisted-suicide out of nearly four million people in Oregon. In Malta this would translate to less than five people a year. There is no ‘thin end of the wedge’. These people, nearly exclusively white, were educated with a diagnosis of cancer (since we know a lot about the progression of this disease.)
Different older adults need different support. Some end-of-life options may not appeal to you, but the option needs to be made available for others that it might help. Euthanasia is about diversity of needs. Not everyone might want or need it but it should be an option for those very few for whom it might help alleviate the pain of dying.
In her last days, 5-year-old Julianna Yuri Snow of Vancouver, Washington, couldn’t move her arms or legs or breathe on her own, but that didn’t stop her from being as fabulous as she could possibly be. Every morning, she put on a princess dress and tiara and painted her nails with glittery polish, telling CNN reporter Elizabeth Cohen that “there’s no such thing as too much glitter.”
The little girl suffered from an incurable neuromuscular disorder. Doctors said that there was “no light at the end of the tunnel” for her, and so she chose to forego medical treatments and died at home instead of in the hospital on June 14, 2016.
Because Julianna loved tea parties, her parents decided to honor her spirit by throwing a whimsical party at the City Bible Church the following Saturday instead of a traditionally somber funeral.
Friends arrived wearing floral print dresses and shirts, and the hall was decorated with everything she loved, including bright colors, pink balloons, and lots of glitter. There was even a nail bar where guests could give each other manicures and a cupcake bar where they could decorate frosted treats.
One of the tables was filled with her old toys and tiny dolls, which the children who came were welcome to take home. And on one long table laden with tea sandwiches, there was a poster made by her grandfather, Tom Snow, which read, “Text from Julianna: Arrived in heaven! I am healed! Thank you for your love! Hope to see you in God’s time,” and a banner with a favorite saying coined by Julianna herself:
Look for Part 1 and 2 of this series HERE and HERE!
1. Do what feels natural.
There’s no right or wrong way to die. For some people, it may be desirable to spend as much time with friends and family as possible, while others may find comfort in solitude, choosing to face things alone. Some people might want to kick up their heels and make the most of the last days, while others may want to go about the same basic routine.
Don’t be afraid to have fun, or to spend your time laughing. Nowhere does it say that the end of life is supposed to be a somber affair. If you want to do nothing more than watch your favorite football team and joke with your relatives, do so.
It’s your life. Surround yourself with the things and the people that you want to be surrounded with. Make your happiness, comfort, and peace your priority.[6]
2. Consider pulling away from your work responsibilities.
Few people receive a terminal diagnosis and wish they’d spent more time at the office, and one of the most common near-death regrets is of working too much and missing out. Try not to spend the time you have left, if there isn’t much, doing something you don’t want to be doing.
It’s unlikely you’ll be making a marked financial difference for your family in a short amount of time, so focus on what will make a difference: addressing the emotional needs of yourself and your family.
Alternatively, some people may find energy and comfort in going about the routine of work, especially if you’re feeling physically strong enough to do so. If it feels natural and reassuring to keep working, do it.
3. Meet with friends and loved ones.
One of the biggest regrets those who are facing death express is not staying in touch with old friends and relatives. Remedy this by taking the opportunity to spend a little time with them, one-on-one if possible, and catch up.
You don’t have to talk about what you’re going through if you don’t want to. Talk about your past, or focus on today. try to keep things as positive as you want them to be.
If you want to open up, do so. Express what you’re going through and release some of the grief you’re experiencing with people you trust.
Even if you don’t have much energy for laughter or conversation, just having them sit by your side can bring you worlds of comfort.
Depending on your family situation, it might be easier to meet with people in big shifts, seeing whole families at once, or you may prefer focusing on individual meetings. These have a tendency to help slow down time, focusing on quality, rather than quantity. This can be a great way of maximizing the time you have left.
4. Focus on unwinding your relationships. It’s common for those near death to want to uncomplicate complicated relationships. This can mean a variety of things, but it generally means trying to resolve disputes and go forward less burdened.
Make an effort to end any fights, arguments, or misunderstandings so that you can move forward. You shouldn’t engage in arguments and keep fighting, but rather, agree to disagree when necessary and end your relationships on a good note.
While you probably can’t be around the people you care about all of the time, you can plan to see them in shifts, so that you rarely feel alone.
If you can’t see your loved ones in person, making a phone call to someone you care about can make a difference as well.
5. Decide how much you want to reveal.
If your health situation is unknown to your friends and family, you may elect to let everyone know what’s going on and keep them up to date, or you may prefer keeping things private. There are advantages and disadvantages to each choice, and it’s something you’ll have to decide for yourself.
Letting people know can help you get closure and feel ready to move on. If you want to grieve together, open up and let your friends family in. You can tell them individually to make it feel more personal, and tell only those people that you really care about, or make it more public. This can make it difficult to avoid the issue and focus on lighter subjects over the next weeks and months, though, which is a negative for many people.
Keeping your situation private can help to maintain your dignity and privacy, a desirable thing for many people. While this might make it difficult to share and grieve together, if you feel like this is something you want to take on alone, you might consider keeping it private.
6. Try keeping things as light as possible.
Your final days probably shouldn’t be spent pouring over Nietzsche and contemplating the void, unless you’re the sort of person who finds pleasure in these things. Let yourself experience pleasure. Pour yourself a glass of whiskey, watch the sunset, sit with an old friend. Live your life.
When you face death, you don’t have to make an extra effort to come to terms with it. It will come to terms with you. Instead, use the time you have left to enjoy the people and things you enjoy, not to focus on death.
7. Be open with what you want from others.
One thing you may have to deal with is the fact that the people around you are having trouble coping with your death. They may look even more upset, hurt, and emotional than you feel. try to be as honest as seems kind with your family, when discussing your feelings and desires.
Though you may want nothing more from them than comfort, optimism, and support, you may find that they will be having trouble in their own grief. That’s perfectly natural. Accept that people are doing their best and that they’ll need a break sometimes, too. Try your best not to be angry or disappointed at how they’re reacting.
You may find that some of your loved ones are showing little emotion at all. Don’t ever think that this means that they don’t care. It just means that they are dealing with your health quietly, in their own way, and that they’re trying not to upset you with how they feel.
8. Talk to a religious advisor, if necessary.
Talking to your pastor, rabbi, or other religious leader can help you feel like you’re less alone in the world and that there’s a path laid out for you. Talking to religious friends, reading religious scriptures, or praying can help you find peace. If you’re well enough to attend your church, mosque, or synagogue, you can also find peace by spending more time with people in your religious community.
However, if you don’t subscribe to a religion, don’t feel compelled to change your mind and to believe in the afterlife after all if that’s not really true to who you are. End your life as you’ve lived it.
Nearly nine years ago, I received a call from my stepmother summoning me to my grandmother’s house. At 92 years old, my Oma had lost most of her sight and hearing, and with it the joy she took in reading and listening to music. She spent most of her time in a wheelchair because small strokes had left her prone to falling, and she was never comfortable in bed. Now she had told her caregiver that she was “ready to die,” and our family believed she meant it.
I made it to my grandmother in time to spend an entire day at her bedside, along with other members of our family. We told her she was free to go, and she quietly slipped away that night. It was, I thought, a good death. But beyond that experience, I haven’t had much insight into what it would look like to make peace with the end of one’s life.
A recent study published in the American Journal of Geriatric Psychiatry, which gathered data from terminal patients, family members and health care providers, aims to clarify what a good death looks like. The literature review identifies 11 core themes associated with dying well, culled from 36 studies:
Having control over the specific dying process
Pain-free status
Engagement with religion or spirituality
Experiencing emotional well-being
Having a sense of life completion or legacy
Having a choice in treatment preferences
Experiencing dignity in the dying process
Having family present and saying goodbye
Quality of life during the dying process
A good relationship with health care providers
A miscellaneous “other” category (cultural specifics, having pets nearby, health care costs, etc.)
In laying out the factors that tend to be associated with a peaceful dying process, this research has the potential to help us better prepare for the deaths of our loved ones—and for our own.
Choosing the way we die
Americans don’t like to talk about death. But having tough conversations about end-of-life care well in advance can help dying people cope later on, according to Emily Meier, lead author of the study and a psychologist who worked in palliative care at the University of California San Diego’s Morris Cancer Center. Her research suggests that people who put their wishes in writing and talk to their loved ones about how they want to die can retain some sense of agency in the face of the inevitable, and even find meaning in the dying process.
Natasha Billawala, a writer in Los Angeles, had many conversations with her mother before she passed away from complications of the neurodegenerative disease ALS (amytropic lateral sclerosis) in December 2015. Both of her parents had put their advanced directivesinto writing years before their deaths, noting procedures they did and didn’t want and what kinds of decisions their children could make on their behalf. “When the end came it was immensely helpful to know what she wanted,” Billawala says.
When asked if her mother had a “good death,” according to the UCSD study’s criteria, Billawalla says, “Yes and no. It’s complicated because she didn’t want to go. Because she lost the ability to swallow, the opportunity to make the last decision was taken from her.” Her mother might have been able to make more choices about how she died if her loss of functions had not hastened her demise. And yet Billawalla calls witnessing her mother’s death “a gift,” because “there was so much love and a focus on her that was beautiful, that I can carry with me forever.”
Pain-free status
Dying can take a long time—which sometimes means that patients opt for pain medication or removing life-support systems in order to ease suffering. Billawala’s mother spent her final days on morphine to keep her comfortable. My Oma, too, had opiate pain relief for chronic pain.
Her death wasn’t exactly easy. At the end of her life, her lungs were working hard, her limbs twitching, her eyes rolling behind lids like an active dreamer. But I do think it’s safe to say that she was as comfortable as she could possibly be—far more so than if she’d been rushed to the hospital and hooked up to machines. It’s no surprise that many people, at the end, eschew interventions and simply wish to go in peace.
Emotional well-being
Author and physician Atul Gwande summarizes well-being as “the reasons one wishes to be alive” in his recent book Being Mortal. This may involve simple pleasures like going to the symphony, taking vigorous hikes or reading books He adds: “Whenever serious sickness or injury strikes and your body or mind breaks down … What are the trade-offs you are willing to make and not willing to make?”
Kriss Kevorkian, an expert in grief, death and dying, encourages those she educates to write advance directives with the following question in mind: “What do you want your quality of life to be?”
The hospital setting alone can create anxiety or negative feelings in an ill or dying person, so Kevorkian suggests family members try to create a familiar ambience through music, favorite scents, or conversation, among other options, or consider whether it’s better to bring the dying person home instead. Billawalla says that the most important thing to her mother was to have her children with her at the end. For many dying people, having family around can provide a sense of peace.
Opening up about death and dying
People who openly talk about death when they are in good health have a greater chance of facing their own deaths with equanimity. To that end, Meier is a fan of death cafés, which have sprung up around the nation. These informal discussion groups aim to help people get more comfortable talking about dying, normalizing such discussions over tea or cake. It’s a platform where people can chat about everything from the afterlife (or lack thereof) to cremation to mourning rituals.
Doctors and nurses must also confront their own resistance to openly discussing death, according to Dilip Jeste, a coauthor of the study and pediatric psychiatrist with the University of California San Diego Stein Institute for Research on Aging. “As physicians we are taught to think about how to prolong life,” he says. That’s why death becomes [seen as] a failure on our part.” While doctors overwhelmingly believe in the importance of end-of-life conversations, a recent US poll found that nearly half (46%) of doctors and specialists feel unsure about how to broach the subject with their own patients. Perhaps, in coming to a better understanding of what a good death looks like, both doctors and laypeople will be better prepared to help people through this final, natural transition.
