The songwriter’s letter to Marianne Ihlen in her last hours was beautiful, poetic and to the point. Yet so often we deal with death in an inane, mawkish way
A short goodbye. A few sentences. But words of such clarity, simplicity and beauty. Many of us have by now read Leonard Cohen’s letter to a woman he once loved, Marianne Ihlen, on her deathbed – and those who didn’t know it already have seen that Cohen is a class act, a man you don’t meet every day.
He heard that she was dying and two hours later he wrote to her that he too was old and his body failing. He had, of course, written for her before, with the lyrics of So Long, Marianne and Bird on the Wire. This time he told her: “Know that I am so close behind you that if you stretch out your hand, I think you can reach mine.”
Slipping into unconsciousness, her friend said that Marianne did reach out her hand. Cohen’s letter also stated that he didn’t need to talk about her beauty and her wisdom, “because you know all about that”. The 10 years they were together on and off, their intimacies, their passions, their endings, those – despite the songs – are all a part of their own personal story. Now he wishes her endless love on her journey – to death. It is everyone’s journey, but few speak so directly of it, not even while whispering in the waiting rooms.
Was Marianne his greatest muse? What does it matter? He loved her for a while. He loved his four bottles of wine a day before he took himself off to the Buddhist monastery where he was given the Dharma name of Jikan which means “silence”. But he knows about silence as he also knows about the tower of song.
Death is so often met with silence or with sentiments that are an inane babble to fill a void. The mawkish inscriptions and epitaphs seek to cauterise the grief, to fix it for a while. For how to write of loss? How do you write to a person you will never see again? I have done it, clumsily, inelegantly, with false jauntiness and then a wish for them to rest. Whatever that means.
So Cohen’s economy of words, the syntax of love, his ability to go straight to the only matter that matters – her death, his mortality, their love – is a thing of beauty and wisdom in itself. His ever deepening voice, the self-mockery, to see him now deadpan and dapper is still quite something. But once she held him like a crucifix and he let her go: “I’m cold as a new razor blade,” he sang.
Some think of him as a doom-monger but he is deadly funny and the faith was always there. “I think I was touched as a child by the music and the kind of charged speech I heard in the synagogue, where everything is important,” he said in his eighth decade, adding ironically that he was singing “a lot of Jew-sounding songs in different keys”.
Yet it is the fact that his words are so charged that is the reason they touch us. In my local park, there is an inscription on a bench for a friend who died and the words are taken from So Long, Marianne: “It’s time that we began to laugh and cry and cry and laugh about it all again.”
Cohen once said: “Poetry is just the evidence of your life. If your life is burning well, poetry is just the ash.” What ash though? Warm, sacred, dancing us to the end of love; young passions, old bodies, a rare and gracious farewell. So long, Marianne. Thank you, Mr Cohen.
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.
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.”
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.”
Last Sunday, 07/24, I woke up feeling a bit wonky. Couldn’t quite put my finger on why I was feelin’ out of sorts; I just was. But I had a swell outing planned for the day, so I couldn’t flake. A couple of friends and I were planning on taking the ferry to Bainbridge Island for lunch. The weather was perfect for our little cruise across Puget Sound.
My friends and I met at Pikes Market, a famous landmark here in The Emerald City, and we walked to the ferry from there. I walk about four miles every day so the 15-minute walk should have been a breeze for me. But something was wrong. I felt lethargic and winded.
The 35-minute ferry ride was magical, as always, but upon disembarking and walking to the restaurant I began to really hurt. Not one to spoil the fun I marshaled my resources and made it to lunch.
The walk back to the ferry was excruciating. I was lightheaded, slightly nauseous, and completely winded. My heart was pounding like it wanted out of my chest. My companions became as worried as I was.
Once we docked in Seattle I had to once again disembark then walk to public transportation and to home. I was in a panic. The crush of the crowd around added to my distress. I thought for sure I was gonna faint, or barf, or worse. I was certain that my lungs were gonna give out on me. After many stops to catch my breath and buckets of sweat from the effort I finally made it home.
I’ve been monitoring my blood pressure for several months. (Ya gotta do this when you’re old, like me.) So once at home, I took a reading. My blood pressure was normal, but my pulse was unusually low, a reading of 49 to be precise. A couple of hours later it was 45. This was odd. I had never experienced anything like that before. Mostly my pulse rate hovers in the upper 70s and low 80s.
I felt much better on Monday. But come Tuesday, I was a total wreck. The least bit of exertion left me exhausted and prostrate. I knew it; my lungs were finally giving out. I put in a call to my doctor and got an expedited appointment for the very next day.
Tuesday’s blood pressure readings were slightly elevated, which was great, but my pulse was way down. I took several readings and each was in the mid 30s never over 40. I still didn’t get it. (This is probably why I’m not a brain surgeon.)
Wednesday turned out to be a nightmare. Unbeknownst to me I was about to began a headlong descent into the maw of the medical industry.
My doctor’s appointment was at 10:30am. The doc took one look at me and ordered an electrocardiogram (EKG). “HOLY SHIT!” She exclaimed. (Or something to that effect.) “How is it that you’re still standing?”
Needless to say, this got my attention right quick. “What?” I inquired. “Although you are not having a heart attack you are this close to the pearly gates. Your pulse is about to flat line, you monkey!” My doctor stuttered. (Ok, maybe she didn’t mention the pearly gates, or call me a monkey, but that was her drift for damn sure.)
Maybe it was the stress or shock of it, but I started to laugh. My doctor asked; “What’s so funny?” I said; “Did you ever see the movie, Death Becomes Her? Remember the scene in the emergency room?”
She gave a faint smile and said; “Yeah, I get it, but this is no laughing matter. Get thee to the Emergency Room ASAP!”
Off I went.
I got to Swedish Hospital (First Hill) Emergency Reception just before noon. The guy behind the desk asked what was wrong with me. I said; “Basically, I’m having a heart attack.” Apparently those are the magic words because the team swung into action. I was admitted immediately, blood was drawn, another EKG, x-rays were taken, and I was hooked up to a heart monitor. Diagnosis: Bradycardia with second-degree heart block.
You need a pacemaker IMMEDIATELY!
We’ll get you a room on the cardiac ward at our Cherry Hill campus, which is just a mile away, as soon as one is available.”
“Oh, OK, I guess,” said I as the severity of the situation finally began to dawn on me. As you can see, I’m not the sharpest pencil in the box.
Back in the emergency room I was laying on a gurney with electrodes and wires sprouting from my chest and back. I lay there for hours listening to the cries, screams, and moans of my fellow emergency patients. Codes blue and grey are being called with regularity and I can just imagine the human misery that surrounds me.
At 5:00pm one of the emergency nurses tells me that a room at the cardiac ward will be available at 7:00pm. “But, 7:00pm is the changing of the shift. So the soonest we could get you there is 7:30pm.”
7:30pm comes and goes. “What’s up?” I ask. “We’re trying to locate transport for you.” Was their retort. “But the Cherry Hill campus is just a mile away. I could walk there from here.” I countered. “But you need a special ambulance, one with a nurse on board, one that can monitor your heart in transit.” “You gotta be kidding!” Said I. “Not at all. You could flat line on the way to Cherry Hill and we’d be liable. Don’t worry, Richard, we will surely have the transport by 10:00pm.”
The transport didn’t actually arrive till 12:30am. That was twelve and a half hours on a gurney in the ER! And the fun is just beginning.
I finally get to the Cherry Hill campus at 1:00am. I am ushered into a room where I am then interrogated for 45 minutes. (Are you now, or have you ever been…) They called it an intake, but a rose by any other name. I haven’t eaten since breakfast at 5:00am the previous day with only water to drink. Now, even the water was being withheld. I guess they anticipated I would have my procedure later that (Thursday) morning.
Not so fast there buckaroo!
Thursday dawns, but nothing happens. I’m confined to my bed (the second worse bed in the world. The first being the ER gurney I left yesterday) and am attached to a heart monitor. I am faint from hunger and more than a little dehydrated. By noon they decide they need to feed me lest the hunger and dehydration kill me before the arrhythmia.
I scarfed down my lunch like a dying man…mostly because I was.
Allow me to pause my narration for a moment and comment on the cardiac nursing staff. They are superb! And even that superlative leaves me wanting. These women are freakin’ rock stars in my book. One in particular, Nurse Jen, totally got me. We both had the same gallows humor. She is my hero.
Late Thursday afternoon Dr. Williams, a cardiac electrophysiologist, saunters into my room. He’s gonna be doing the cutting on me. He is a tall handsome black man with the most unassuming manner. He looks me in the eye and talks to me like I’m a human. I’m super impressed with his bedside manner. He tells me my blood work and enzymes are excellent. My x-rays show that my heart isn’t enlarged. (But wait! Every one tells me I have a huge heart.) And there’s no sign that I had a heart attack. We talk about the pacemaker and the procedure. He tells me it’s about the size of a silver dollar. (When I actually see the blasted thing the next day, just before they shove into my chest, I have to wonder where Dr. Williams gets his silver dollars.) The procedure is very routine; he tells me. “Yeah sure, for you maybe.” It’ll last approximately 45 minutes, during which I will be enjoying twilight anesthesia. “Twilight anesthesia, huh? That sounds delightful.” Better living through chemistry, I always say.
I get a sedative Thursday night to help me sleep in my little bed of torture. And nothing by mouth after midnight. (Oh no! Not that again.)
Friday morning my nurses prep me for surgery. First, they have to shave my manly chest, don’t cha know. Nurse Jen takes the lead with a maniacal gleam in her eye. This is more than a little awkward and also maybe a wee bit kinky.
Finally the fateful hour arrives. I get a second IV stent, because apparently one is not enough for these folks. Then I’m wheeled down to the bowels of the building where I disappear into one of the surgery suits.
Two hours later I’m back in my room dopey as all get-out, but still kickin’.
I’m home now, i’m happy to report. They liberated me on Saturday, 07/30, afternoon. And I am only slightly worse for the wear. I have a very distinctive slash across my left pectoral. There’s an unsightly bulge just below it. It looks like i’m growing a third breast. And a nasty purple and brown bruise that runs from my shoulder to my sternum and from my collarbone to my nipple. I sound like a real attractive guy, huh?
The Moral Of The Story
My friends, life is short! Ought we not live every day like it’s our last? I think so. I have decided that I will try to be more kind to myself and those around me. Because, ya know what? In a twinkling of an eye, it can and most assuredly be over.
If you’re an American alive today, chances are you’ve heard or used one of over 100 different euphemisms for death. A common reason many people don’t just say someone has “died” is a desire to not want to appear too harsh. This happens not just in everyday conversation, but also in obituaries we read in newspapers and increasingly online.
Are some expressions for dying more prevalent in obituaries than others? Are there regional variations? To find out the answers to these questions, I reached out to Legacy.com, a leading online provider of paid death notices. According to the data they provided, in 2015, they hosted 2,408,142 obituaries across the 50 states and the District of Columbia. Of those, 1,341,870 included one of their 10 most common euphemisms, or the word died.
The top term is unsurprising. “Passed away” was used in 32.5 percent of all obituaries and topped the national list. In every single state, it was either “passed away” or “died” (20.6 percent nationwide at #2) that was used most often. The relative prevalence of each of these terms paints a much more diverse picture, however.
Using a similar methodology to the “Most Distinctive Causes of Death” map, I calculated the difference between the regional and national prevalence of each term. The highest value gives the phrase that is most “characteristic” to that state. As it turns out, some terms are used comparatively more often than others depending on where you’ve died—or at least where your obituary is published.
An advance directive is basically just a written document or a series of documents explaining what you want to have happen during your end-of-life care. It may outline a variety of topics, including your wishes for your care, should you become incapacitated, as well as naming proxies and a power of attorney.
These documents will need to be drawn up by attorneys and notarized. These aren’t likely things that you’ll want to have to spend a lot of time dealing with yourself, so it’s common to delegate these tasks to others.
There’s a lot of comfort in knowing that you’ve taken care of everything ahead of time and haven’t left big or stressful decisions to be made after you’re gone. If you’re up to it, it’s important to have legal documents drawn up..
A living will describes the type of healthcare you hope to receive and whether or not you’d like to remain on life support, and under what circumstances, should you become incapacitated and unable to make your own decisions. Living wills can be prepared by attorneys and should be prepared ahead of time.
Last wills are designed to designate property to beneficiaries, assign guardians for minor children, and elucidate any last wishes. This is somewhat different than a living trust, which will transfer property immediately, as opposed to after your death.
In some cases, it may be good for you to delegate these responsibilities instead to a proxy, in the event that you’re unwilling or incapable of making these decisions for yourself. This is often an adult-aged child or spouse, who will be tasked with making choices regarding your health care as things progress.
In some cases, it may be difficult to choose or assign proxy responsibilities to a private party, and you may wish instead to assign them to an attorney. This is extremely common and can be a relatively stress-free way of turning over technical responsibilities to someone else, allowing you to deal with your own comfort and emotional responsibilities.
A health care power of attorney is different than a general power of attorney, which provides for financial assistance after death. While both of these may be appropriate options, it’s important to distinguish between them.
Though it may be slightly unnerving, it’s important to decide what you want to happen to your body after you die. There are many options and considerations, depending on your culture and religious background.
If you want a funeral, or religious ritual to be performed after your death, you may want to arrange the ceremony yourself, or delegate the responsibility to a loved one. Make the arrangements in terms of churches, funeral homes, if it helps you to find closure.
If you want to be buried, decide where you want to be buried and which family members you want to be buried near, if you haven’t made those decisions already. Secure a burial plot by making a down payment, and make arrangements with a funeral home in your area, if necessary.
If you’d like your body to be donated, make sure your donor status is up to date and accurate, according to your wishes. Contact the university or foundation to which you want your remains donated and make the necessary arrangements.
Tomorrow, Part 3 — Making the Most of Your Last Days
In China there is a traditional belief that dying people bring bad luck.
Perhaps this explains why Song Tang Hospice, China’s first palliative care center, has had to move seven times in the past 29 years. Once, dozens of protesters, who blamed the hospice for bringing a curse on the neighborhood, attacked it and smashed its windows. Staff had to move more than a hundred terminally ill patients out at midnight. Some patients were taking their IV drips down the road with them, while others were huddled together crying, worrying about whether they would have a place to stay before they died. After hours of negotiations and a deal to increase the rent on the property, the masses retreated before sunrise.
Li Songtang, the center’s founder, recalls that even his wife once balked at the thought of death: Two decades ago she required him change out of his work clothes before stepping into their home.
According to Li, the Chinese fear death so much that they’d prefer to run away from it rather than have to think about it at all. In the case of palliative care, cultural taboos related to death also play a significant role. Take, for example, the quintessentially Chinese concept of filial piety: Children who want to be seen to “do the right thing” for their ailing parents will reject palliative care and insist on more aggressive treatment, trying to preserve life at all costs.
Yet no matter how much they’re ignored, death and terminal diseases won’t be defied. Non-communicable ailments such as cancer, cardiovascular disease, and respiratory disease account for four out of every five deaths in China, according to statistics from the World Health Organization.
Palliative care — sometimes called “comfort care” because the aim is to provide relief, and not a cure, to patients with terminal diseases like cancer — is hard to come by in China. According to a 2015 global studyof death by The Economist, China ranked 69 out of 80 countries in terms of palliative health care environment — below average across five key indicators, including quality and affordability of care, as well as community engagement.
China’s medical system in general is still developing. While the country has pledged to provide affordable and high-quality health care to all citizens by 2020, it still only spends around 5.5 percent of its GDP on health care, while the United Kingdom, for example, spends 9 percent.
The Economist report described the development of palliative care in China as “slow” and access to it as “limited.” It noted that apart from the country’s 400 hospitals that specialize in treating cancer, there are only a handful of charity hospitals and community health centers that offer end-of-life care.
Song Tang is one of these non-governmental facilities, and it has been the last stop for about 38,000 terminally ill patients, the youngest being a 5-month-old girl, since it opened its doors in 1987.
Chen Wenjie is one person whose death was made more bearable through palliative care at Song Tang. In 2008, Chen suffered a serious stroke and spent one month in the intensive care unit at Wujing Hospital in Beijing. She was tethered to an oxygen tank, a urinary catheter, and nasogastric tubes. Chen’s husband, Yu Haifeng, couldn’t bear to see her red, swollen body. “I’ve never seen her endure so much suffering,” Yu told Sixth Tone. “I was so afraid that her frail body would not be able to handle so much stress.”
The doctors gave Chen seven months to live. After her diagnosis, no hospital in Beijing would accept her — in public hospitals, patients are required to leave within 10 days of an operation.
Luo Jilan, the secretary-general of the Chinese Association for Life Care, described the Chinese medical system as “broken” in a phone call with Sixth Tone. For now, she said, patients who are forced to leave hospitals have few alternatives. “Without official policies and standards, hospice care has little hope of developing,” she added.
After a failed effort to take care of his wife at home, an increasingly desperate Yu turned to Song Tang on a friend’s recommendation.
There, Chen could benefit from greater care and attention. At Song Tang every ward has a nurse on call around the clock. At mealtime, nurses remind patients via intercom to eat and take their medicine. And twice a day care workers escort or wheel patients out to the hospice’s siheyuan, a kind of quadrangular courtyard common in Beijing, for some fresh air. Around midnight, nurses get up to change patients’ diapers.
Hospice care is not covered by public medical insurance, so each month Yu had to fork out 3,000 yuan (around $450) of his own money. Yu is still paying the bill for Chen’s stint in the hospital ICU. As a former railway worker, his monthly pension is 3,480 yuan.
Yu says that thanks in large part to the palliative care at Song Tang, his wife lived longer than they had expected and died a better death. “She didn’t go through much pain when she died,” Yu said. “There were no bruises on her body, and everything was peaceful.”
On average, patients spend about a month at Song Tang before they die.
When Sixth Tone visited Song Tang, patients in an eight-person ward were playing with their pet crickets, competing to see whose could chirp the loudest.
Shi Jingbin, 81, has dementia, and in 2013 he suffered a cerebral hemorrhage. Unable to stretch out, Shi’s blanket was pitched like a tent over his bent knees. Resting on his lap was a cardboard box of dog-eared philosophy books. Today, Shi can’t even recognize his son, but he still remembers Plato, Nietszhe, and Lao-tzu.
Song Tang’s Li said that when Shi first arrived, he was very lonely because no one could talk to him or understand him. “Emotional and spiritual support are so essential to these patients,” he said.
At Song Tang, around 70 percent of patients aren’t religious. “Without a spiritual life, it is hard to face death alone, fight fear, and control anxiety,” said Li.
China’s aging society suggests that in the future the need to address palliative care will only grow with time. Still, establishing new hospice facilities often faces strong resistance from people who live near the proposed sites.
In what is fast becoming a trend across China, residents of the Yangpu and Pudong districts of Shanghai in 2014 protested against plans to build hospitals, and local officials caved to their demands. The health bureaus of both districts declined Sixth Tone’s interview requests.
Since 2012, the Shanghai municipal government has promoted government-subsidized hospice wards at community health centers. One such facility is the palliative ward at Jingan Temple Street Community Health Service Center, which is overseen by Miao Jun.
The ward only accepts patients with the most advanced stages of cancer due to a shortage of beds — there are only 25 in total. This means that, unlike hospice care in some other countries, patients who have terminal illnesses have to be turned away.
Miao is quick to cite another problem: a dearth of doctors who specialize in geriatrics. At medical schools in China there is little education about hospice care, he says. In addition, curricula usually center on curative treatment, and doctors are told to assign highest priority to extending a patient’s life, he says. In Miao’s view, quality of life considerations are broadly ignored.
In a country where violent conflicts between medical professionals and patients are common, doctors need to be especially mindful of how family and friends of the patient might react when their loved one dies.
Despite the challenges, the status of hospice in China is showing signs of improving — at least for Miao and his colleagues. The Jingan Temple Street center has not received a single complaint, and they’ve yet to have any disputes with patients since they opened in 2012.
There are some small signs of greater public acceptance of hospice care. A neighbor of the Jingan Temple Street hospice ward who declined to be named said he wasn’t bothered by the presence of the facility. “When people die, there is no hearse, no wreath,” he said. “The family just quietly takes the body of the deceased away, so the community doesn’t feel the aura of death.”