After I was diagnosed with brain cancer, I developed a desire to have really tough conversations about death and dying with my family so that I could share my thoughts with them and feel less alone on this journey that’s been full of uncertainty. At first, this was quite challenging for me and my family, but one of the things that has really helped us to be able to have these tough conversations was my realization that this topic was not something unique and exclusive to me and people like me, but rather a conversation we all should be having regardless of age, health, and condition.
Nobody lives forever and even though some people may seem to have better odds than others, tomorrow is not guaranteed to anyone. Unfortunately, our society makes death and dying very frightening because the only time people get asked about their wishes and end of life care is when death seems to be looming directly over them. This prevents us from developing any level of familiarity, comfort, and acceptance with this topic.
In an effort to confront this problem and try to combat this societal barrier, I began advocating for my entire family to have these conversations and revisit them regularly so that when the time comes we are each able to revisit this topic as a familiar concept opposed to completely foreign and devastatingly unbelievable circumstances.
While there are very real emotional and social challenges associated with addressing this topic, I’ve become incredibly empowered by the idea that there are still things out there that I have a choice over. This has been a very rewarding and welcomed realization after struggling to manage the overwhelming feelings of uncertainty and loss of control that formed after my diagnosis.
My intention is not to instill paranoia about death or dying, but rather begin to open a door for each of you to have those tough conversations about your future wishes regarding being comforted, supported, treated, and remembered when the time arises. At no point are you giving up hope by talking about this topic. You are simply ensuring that your wishes regarding the eventually inevitable circumstance that everyone will face are communicated and respected.
WANT a better 2016? Try thinking more about your impending demise.
Years ago on a visit to Thailand, I was surprised to learn that Buddhist monks often contemplate the photos of corpses in various stages of decay. The Buddha himself recommended corpse meditation. “This body, too,” students were taught to say about their own bodies, “such is its nature, such is its future, such its unavoidable fate.”
Paradoxically, this meditation on death is intended as a key to better living. It makes disciples aware of the transitory nature of their own physical lives and stimulates a realignment between momentary desires and existential goals. In other words, it makes one ask, “Am I making the right use of my scarce and precious life?”
In fact, most people suffer grave misalignment. In a 2004 article in the journal Science, a team of scholars, including the Nobel Prize winner Daniel Kahneman, surveyed a group of women to compare how much satisfaction they derived from their daily activities. Among voluntary activities, we might expect that choices would roughly align with satisfaction. Not so. The women reported deriving more satisfaction from prayer, worship and meditation than from watching television. Yet the average respondent spent more than five times as long watching TV as engaging in spiritual activities.
If anything, this study understates the misalignment problem. The American Time Use Survey from the Bureau of Labor Statistics shows that, in 2014, the average American adult spent four times longer watching television than “socializing and communicating,” and 20 times longer on TV than on “religious and spiritual activities.” The survey did not ask about hours surfing the web, but we can imagine a similar disparity.
This misalignment leads to ennui and regret. I’m reminded of a friend who was hopelessly addicted to British crossword puzzles (the ones with clues that seem inscrutable to Americans, such as, “The portly gentleman ate his cat, backwards”). A harmless pastime, right? My friend didn’t think so — he was so racked with guilt after wasting hours that he consulted a psychotherapist about how to quit. (The advice: Schedule a reasonable amount of time for crosswords and stop feeling guilty.)
While few people share my friend’s interest, many share his anxiety. Millions have resolved to waste less time in 2016 and have already failed. I imagine some readers of this article are filled with self-loathing because they just wasted 10 minutes on a listicle titled “Celebrities With Terrible Skin.”
Some might say that this reveals our true preferences for TV and clickbait over loved ones and God. But I believe it is an error in decision making. Our days tend to be an exercise in distraction. We think about the past and future more than the present; we are mentally in one place and physically in another. Without consciousness, we mindlessly blow the present moment on low-value activities.
The secret is not simply a resolution to stop wasting time, however. It is to find a systematic way to raise the scarcity of time to our consciousness.
Even if contemplating a corpse is a bit too much, you can still practice some of the Buddha’s wisdom resolving to live as if 2016 were your last year. Then remorselessly root out activities, small and large, that don’t pass the “last-year test.”
There are many creative ways to practice this test. For example, if you plan a summer vacation, consider what would you do for a week or two if this were your last opportunity. With whom would you reconnect and spend some time? Would you settle your soul on a silent retreat, or instead spend the time drunk in Cancún, Mexico?
If this year were your last, would you spend the next hour mindlessly checking your social media, or would you read something that uplifts you instead? Would you compose a snarky comment on this article, or use the time to call a friend to see how she is doing? Hey, I’m not judging here.
Some might think that the last-year test is impractical. As an acquaintance of mine joked, “If I had one year to live, I’d run up my credit cards.” In truth, he probably wouldn’t. In a new paper in the science journal PLOS One, two psychologists looked at the present value of money when people contemplated death. One might assume that when reminded of death, people would greatly value current spending over future spending. But that’s not how it turned out. Considering death actually made respondentsless likely to want to blow money now than other scenarios did.
Will cultivating awareness of the scarcity of your time make you grim and serious? Not at all. In fact, there is some evidence that contemplating death makes you funnier. Two scholars in 2013 published an academic paperdetailing research in which they subliminally primed people to think about either death or pain, and then asked them to caption cartoons. Outside raters found the death-primed participants’ captions to be funnier.
There’s still time to rethink your resolutions. Forget losing weight and saving money. Those are New Year’s resolutions for amateurs. This year, improve your alignment, and maybe get funnier in the process: Be fully alive now by meditating on your demise. Happy 2016!
“Who knew there’d come a time when people didn’t want to bury their children?” says Ruth Cocker Burks.
Between 1984 and the mid-1990s, before better HIV drugs effectively rendered her obsolete, Ruth Coker Burks cared for hundreds of dying people, many of them gay men who had been abandoned by their families. She buried more than three dozen of them herself, after their families refused to claim their bodies. For many of those people, she is now the only person who knows the location of their graves.
It started in 1984, in a hospital hallway. Ruth Coker Burks was 25 and a young mother when she went to University Hospital in Little Rock, Ark., to help care for a friend who had cancer. Her friend eventually went through five surgeries, Burks said, so she spent a lot of time that year parked in hospitals. That’s where she was the day she noticed the door, one with “a big, red bag” over it. It was a patient’s room. “I would watch the nurses draw straws to see who would go in and check on him. It’d be: ‘Best two out of three,’ and then they’d say, ‘Can we draw again?’ ”
She knew what it probably was, even though it was early enough in the epidemic for the disease to be called GRID — gay-related immune deficiency — instead of AIDS. She had a gay cousin in Hawaii and had asked him about the stories of a gay plague after seeing a report on the news. He’d told her, “That’s just the leather guys in San Francisco. It’s not us. Don’t worry.” Still, in her concern for him, she’d read everything she could find about the disease over the previous months, hoping he was right.
Whether because of curiosity or — as she believes today — some higher power moving her, Burks eventually disregarded the warnings on the red door and snuck into the room. In the bed was a skeletal young man, wasted away to less than 100 pounds. He told her he wanted to see his mother before he died.
“I walked out and [the nurses] said, ‘You didn’t go in that room, did you?’” Burks recalled. “I said, ‘Well, yeah. He wants his mother.’ They laughed. They said, ‘Honey, his mother’s not coming. He’s been here six weeks. Nobody’s coming.’”
Unwilling to take no for an answer, Burks wrangled a number for the young man’s mother out of one of the nurses, then called. She was able to speak for only a moment before the woman on the line hung up on her.
“I called her back,” Burks said. “I said, ‘If you hang up on me again, I will put your son’s obituary in your hometown newspaper and I will list his cause of death.’ Then I had her attention.”
Her son was a sinner, the woman told Burks. She didn’t know what was wrong with him and didn’t care. She wouldn’t come, as he was already dead to her as far as she was concerned. She said she wouldn’t even claim his body when he died. It was a curse Burks would hear again and again over the next decade: sure judgment and yawning hellfire, abandonment on a platter of scripture. Burks estimates she worked with more than 1,000 people dying of AIDS over the years. Of those, she said, only a handful of families didn’t turn their backs on their loved ones.
Burks hung up the phone, trying to decide what she should tell the dying man. “I went back in his room,” she said, “and when I walked in, he said, ‘Oh, momma. I knew you’d come,’ and then he lifted his hand. And what was I going to do? So I took his hand. I said, ‘I’m here, honey. I’m here.’”
Burks pulled a chair to his bedside, talked to him, and held his hand. She bathed his face with a cloth and told him she was there. “I stayed with him for 13 hours while he took his last breaths on Earth,” she said.
Since at least the late 1880s, Burks’s kin have been buried in Files Cemetery, a half-acre of red dirt on top of a hill in Hot Springs, Ark. When Burks was a girl, she said, her mother got in a final, epic row with Burks’s uncle. To make sure he and his branch of the family tree would never lie in the same dirt as the rest of them, Burks said, her mother quietly bought every available grave space in the cemetery: 262 plots. They visited the cemetery most Sundays after church when she was young, Burks said, and her mother would often sarcastically remark on her holdings, looking out over the cemetery and telling her daughter, “Someday, all of this is going to be yours.”
“I always wondered what I was going to do with a cemetery,” she said. “Who knew there’d come a time when people didn’t want to bury their children?”
Files Cemetery is where Burks buried the ashes of the man she’d seen die, after a second call to his mother confirmed she wanted nothing to do with him, even in death. “No one wanted him,” she said, “and I told him in those long 13 hours that I would take him to my beautiful little cemetery, where my daddy and grandparents were buried, and they would watch out over him.”
Burks had to contract with a funeral home in Pine Bluff, some 70 miles away, for the cremation. It was the closest funeral home she could find that would even touch the body. She paid for the cremation out of her savings.
The ashes were returned to her in a cardboard box. She went to a friend at Dryden Pottery in Hot Springs, who gave her a chipped cookie jar for an urn. Then she went to Files Cemetery and used a pair of posthole diggers to excavate a hole in the middle of her father’s grave.
“I knew that Daddy would love that about me,” she said, “and I knew that I would be able to find him if I ever needed to find him.” She put the urn in the hole and covered it over. She prayed over the grave, and it was done.
Over the next few years, as she became one of the go-to people in the state when it came to caring for those dying with AIDS, Burks would bury more than 40 people in chipped cookie jars in Files Cemetery. Most of them were gay men whose families would not even claim their ashes.
“My daughter would go with me,” Burks said. “She had a little spade, and I had posthole diggers. I’d dig the hole, and she would help me. I’d bury them, and we’d have a do-it-yourself funeral. I couldn’t get a priest or a preacher. No one would even say anything over their graves.”
She believes the number is 43, but she isn’t sure. Somewhere in her attic, in a box, among the dozens of yellowed day planners she calls her Books of the Dead filled with the appointments, setbacks, and medications of people 30 years gone, there is a list of names.
Burks always made a last effort to reach out to families before she put the urns in the ground. “I tried every time,” she said. “They hung up on me. They cussed me out. They prayed like I was a demon on the phone and they had to get me off — prayed while they were on the phone. Just crazy. Just ridiculous.”
After she cared for the dying man at University Hospital, people started calling Burks, asking for her help. “They just started coming,” she said. “Word got out that there was this kind of wacko woman in Hot Springs who wasn’t afraid. They would tell them, ‘Just go to her. Don’t come to me. Here’s the name and number. Go.’…I was their hospice. Their gay friends were their hospice. Their companions were their hospice.”
Before long, she was getting referrals from rural hospitals all over the state. Financing her work through donations and sometimes out of her own pocket, she’d take patients to their appointments, help them get assistance when they could no longer work, help them get their medicines, and try to cheer them up when the depression was dark as a pit. She said many pharmacies wouldn’t handle prescriptions for AIDS drugs like AZT, and there was fear among even those who would.
She soon stockpiled what she called an “underground pharmacy” in her house. “I didn’t have any narcotics, but I had AZT, I had antibiotics,” she said. “People would die and leave me all of their medicines. I kept it because somebody else might not have any.”
Burks said the financial help given to patients — from burial expenses to medications to rent for those unable to work — couldn’t have happened without the support of the gay clubs around the state, particularly Little Rock’s Discovery. “They would twirl up a drag show on Saturday night and here’d come the money,” she said. “That’s how we’d buy medicine, that’s how we’d pay rent. If it hadn’t been for the drag queens, I don’t know what we would have done.”
Burks’s stories from that time border on nightmarish, with her watching one person after another waste away before her eyes. She would sometimes go to three funerals a day in the early years, including the funerals of many people she’d befriended while they fought the disease. Many of her memories seem to have blurred together into a kind of terrible shade. Others are told with perfect, minute clarity.
There was the man whose family insisted he be baptized in a creek in October, three days before he died, to wash away the sin of being gay; whose mother pressed a spoonful of oatmeal to his lips, pleading, “Roger, eat. Please eat, Roger. Please, please, please,” until Burks gently took the spoon and bowl from her; who died at 6 foot 6 and 75 pounds; whose aunts came to his parents’ house after the funeral in plastic suits and yellow gloves to double-bag his clothes and scrub everything, even the ceiling fan, with bleach.
She recalled the odd sensation of sitting with dying people while they filled out their own death certificates, because Burks knew she wouldn’t be able to call on their families for the required information. “We’d sit and fill it out together,” she said. “Can you imagine filling out your death certificate before you die? But I didn’t have that information. I wouldn’t have their mother’s maiden name or this, that, or the other. So I’d get a pizza and we’d have pizza and fill out the death certificate.”
Billy is the one who hit her hardest and the one she remembers most clearly of all. He was one of the youngest she ever cared for, a female impersonator in his early 20s. He was beautiful, she said, perfect and fine-boned. She still has one of Billy’s dresses in her closet up in the city of Rogers: a tiny, flame-red designer number, intricate as an orchid.
As Billy’s health declined, Burks accompanied him to the mall in Little Rock as he quit his job at a store there. Afterward, she said, he wept, Burks holding the frail young man as shoppers streamed around them. “He broke down just sobbing in the middle of the mall,” she said. “I just stood there and held him until he quit sobbing. People were looking and pointing and all that, but I couldn’t care less.”
Once, a few weeks before Billy died — he weighed only 55 pounds, the lightest she ever saw, light as a feather, so light that she was able to lift his body from the bed with just her forearms — Burks had taken Billy to an appointment in Little Rock. Afterward, they were driving around aimlessly, trying to get his spirits up. She often felt like crying in those days, she said, but she couldn’t let herself. She had to be strong for them.
“He was so depressed. It was horrible,” she said. “We were driving by the zoo, and somebody was riding an elephant. He goes, ‘You know, I’ve never ridden an elephant.’ I said, ‘Well, we’ll fix that.’” And she turned the car around. Somewhere, in the boxes that hold all her terrible memories, there’s a picture of the two of them up on the back of the elephant, Ruth Coker Burks in her heels and dress, Billy with a rare smile.
When it was too much, she said, she’d go fishing. And it wasn’t all terrible. While Burks got to see the worst of people, she said, she was also privileged to see people at their best, caring for their partners and friends with selflessness, dignity, and grace. She said that’s why she’s been so happy to see gay marriage legalized all over the country.
“I watched these men take care of their companions and watch them die,” she said. “I’ve seen them go in and hold them up in the shower. They would hold them while I washed them. They would carry them back to the bed. We would dry them off and put lotion on them. They did that until the very end, knowing that they were going to be that person before long. Now, you tell me that’s not love and devotion? I don’t know a lot of straight people who would do that.”
Ruth Coker Burks had a stroke five years ago, early enough in her life that she can’t help but believe that the stress of the bad old days had something to do with it. After the stroke, she had to relearn everything: to talk, to feed herself, to read and write. It’s probably a miracle she’s not buried in Files Cemetery herself.
After better drugs, education, understanding, and treatment made her work obsolete, she moved to Florida for several years, where she worked as a funeral director and a fishing guide. When Bill Clinton was elected president, she served as a White House consultant on AIDS education.
A few years ago, she moved to Rogers to be closer to her grandchildren. In 2013, she went to bat for three foster children who were removed from the elementary school at nearby Pea Ridge after administrators heard that one of them might be HIV-positive. Burks said she couldn’t believe she was still dealing with the same knee-jerk fears in the 21st century.
The work she and others did in the 1980s and 1990s has mostly been forgotten, partly because so many of those she knew back then have died. She’s not the only one who did that work, but she’s one of the few who survived. And so she has become the keeper of memory.
Before she’s gone, she said, she’d like to see a memorial erected in Files Cemetery. Something to tell people the story. A plaque. A stone. A listing of the names of the unremembered dead who lie there.
“Someday,” she said, “I’d love to get a monument that says: This is what happened. In 1984, it started. They just kept coming and coming. And they knew they would be remembered, loved, and taken care of, and that someone would say a kind word over them when they died.”
Pop music star Prince apparently died without writing a will, and it’s likely that his relatives and business contacts will be fighting in a Minnesota court for years over his estate, estimated at $150 million to $300 million.
With no wife or children, first in line, according to estate law, are Prince’s six siblings. Under simple court rules governing inheritances when there is no will, each of the siblings will get an equal share. That will apply whether Prince was fond of each of the siblings or not. And with Prince’s complex estate, massive business dealings, his practice of secrecy and millions in wealth at stake, attorneys don’t expect this case to culminate quickly or simply.
“It’s ironic,” said Avi Kestenbaum, a New York estate planning attorney with Meltzer Lippe. “Prince, at age 57, spent 37 years making his legacy. He fought the music industry for control, and now he has no control.”
It’s a lesson for other people, whether rich or poor, famous or regular. When you die without a will, you get no say. If you hated a relative, your children might end up in that person’s care. If you divorced and forgot to take a previous spouse’s name off an account or insurance policy, your new spouse or children might not benefit. If you have a business, and children with no interest in it and no business savvy get control, the value of your life’s work could be destroyed.
After a death, if there’s no will, a house with both spouses’ names on it will go to the surviving spouse. But in an era of multiple marriages and divorces, inheritances get sloppy. Consider a father with grown children who have sweet memories of the home where they were raised. With no will, a second wife could inherit the house and give it to her own children from her previous marriage, leaving out the children who were raised in that house, notes estate planning attorney Adam Damerow, of McGuireWoods in Chicago.
On the other hand, estate planning attorneys recall instances in which second wives have been left homeless because a husband died without updating an old will to incorporate a second wife. In an old will, he leaves his home and everything else to his children.
“The kids kick the woman out of her own house,” said Kestenbaum.
In situations where everyone gets along, the children might ignore the will and let the woman stay in the home. But in some families not everyone gets along, Damerow said.
The court can’t guess what might have been in a person’s head, but certain rules apply when there is no will: If a person has a spouse and children, the estate is divided half to the spouse and half to the children. If there are only children, the estate is divided equally among them. If there are no children, siblings come next and inherit an equal share of the wealth.
Many people don’t write wills because they assume they are young and have plenty of time. Yet Prince was only 57 years old. Many people also do not want to think about dying, or worry about giving up control, said Kestenbaum. They say: “I’ll be dead anyway. Why should I care?”
But the Prince case illustrates one reason to care: His siblings now could be targets of people trying to exercise business interests that are not favorable to them, and even if the siblings got along well the pressures can divide them.
Estate attorneys say that they often see families torn apart as they deal with the division of property and control after a death. “The most fights occur where there is a business or real estate that is given to children equally,” said Kestenbaum. “How do you run a restaurant with four chefs in the kitchen?” he said. “So maybe you leave a business to one child and insurance to another.”
Families should revisit the will every few years because as time passes, one asset can gain value a lot while another loses.
Les Kotzer, a Toronto attorney, takes preparations for the family even further in his book: “The Family Fight: Planning to Avoid It.”
During years of working with wills, Kotzer noted that many grown children end up in feuds because parents failed to talk with their children about wills while still alive. Conversations can suggest better ways of dividing possessions. One problem Kotzer noted was that one grown child might have memories of playing a piano in the family home, while the child who is to be given the piano in a will might have a spouse that doesn’t want the instrument cluttering their house.
Everyone should ask themselves, “How do I want to die?”
BY MARK FOURRE
As doctors, we are trained to solve problems.
If an arm is broken, we set it. If a heart valve is leaking, we replace it. If infection strikes, we do our best to cure it. There is real satisfaction when, as physicians, we make an accurate diagnosis and deploy an effective treatment.
Perhaps that’s why, when there is no problem to be solved, we don’t always do our best work. Death, after all, is not a solvable problem. All our patients will die. We can’t fix that. And too often, as a result, we don’t do all we should, or could to help our patients accept the inevitable.
Physicians are not alone, of course. Our society generally does a poor job of seeing death as a natural outcome of life. Many of us maintain the myth of our own invincibility long past our 20s. And where death was once something that typically happened at home in the presence of family and friends, it more often happens today in a hospital or nursing home.
When confronted with the question, “How do you want to die?” many of us might answer “I don’t.” But this question, the kind of death we want for ourselves, lives with us every day of our lives. It is true that extending life is a desirable and legitimate goal of our healthcare system, but the quality of our lives — and of our deaths — have a place as well.
None of us can solve death as if it’s a problem, but we can all have goals for the end of our lives. And it is that change, from problem-solving to goal-setting, which can lead us as physicians to do better by our patients when it comes to end-of-life care.
Of course, better end-of life-care, like better health overall, is not just the doctor’s responsibility. Just as everyone needs to do their part in the work of extending and improving life by not smoking, exercising and eating a healthy diet, so, too, must our patients take an active and informed role in good end-of-life planning.
The rewards can be a bit counter-intuitive. Research shows that among those who are given a terminal diagnosis, having an end-of-life plan that includes goal-directed care like hospice leads to care that is not only less costly, but patients on average are happier and actually live longer than those who exhaust every treatment option.
The good news is members of the medical community are beginning to embrace these changes. Across the MaineHealth system, for instance, events were planned around National Healthcare Decisions Day on April 16, organized to raise awareness of better end-of-life planning. And every day the conversation is growing among doctors, nurses and other practitioners about the need to talk to our patients about the benefits of creating advanced directives for healthcare and thoughtful end-of-life options such as hospice care.
For all this good work, though, the most important lessons I learned about death and dying didn’t come as part of my medical training. They came from my parents.
During my internship year, my dad as a relatively young man in his late 50s, had to struggle with the decision of whether to undergo chemotherapy for advanced lung cancer. He decided that his goal was not to pursue more days alive, but rather, to live the rest of his life meaningfully.
He chose to forgo chemotherapy and identified the goals he wanted to meet before dying. He completed the design of a church he was working on. He deliberately and intimately connected with family and friends. He put his financial affairs in order. He even planned his entire visitation service and funeral, including designing the memorial card handed out at his wake.
Importantly, he didn’t do this alone. He had to talk with a lot of people. Everyone important to him knew the plan. His family, his doctor, his business associates and his close friends all understood what to expect. And we all knew that my dad was living the way he always had, in a thoughtful and loving manner.
And, he spent time conversing with his God. “I don’t have a problem with dying,” he would say. “I’m just not sure I agree with the timing.”
My father was able to have the kind of death he wanted because he thought about it beforehand and took steps to insure that he died the way he had always lived.
Years later, my mother died from Parkinson’s disease. I am grateful to this day for the afternoon she spent with me not long after her diagnosis putting her thoughts down into a medical directive that would guide my family through the end stages of that illness. It was a natural and rewarding conversation in part because we didn’t set out to produce a perfect document, just one that would work for my mom and our family.
As a doctor, I have seen the alternatives to these thoughtful deaths.
I remember the first time I responded to a code in the hospital. I was a young medical student. A “code” or “code blue” is called over the intercom system of a hospital when a patient has had an unexpected cardiac arrest.
Amongst all the commotion, the thing that stood out the most to me was the patient. She was very frail, very old — and lifeless. The whole scene struck me as too much. It felt invasive and out of place.
Despite the apparent futility of the efforts, the “code” continued for what seemed to be a very long time. As is the case with the vast majority of “code blues,” the effort was not successful.
There is a reason why 65 percent of older physicians have an advanced directive, compared to 20 percent of the population generally. We know the limits of modern medicine. As a result, we know how we would like to die.
As physicians we must resolve to build end-of-life conversations into the care of all our patients. The time to start the conversation is long before a terminal diagnosis. And as with smoking cessation, progress will depend not on one conversation but instead on an ongoing dialogue.
If you are a patient and your doctor hasn’t brought up end-of-life care, don’t be shy. Ask. The time to start is now, and it is a conversation that should include not only your doctor, but all those close to you.
As an integral and inevitable part of life, death is not a problem. But our failure to plan for it is. Let’s solve it, together.
Hospice nurse Jen Moss admires the spirit of patient Jody Wooton
Jen, 41, did not set out to become a hospice nurse, but she feels compelled by a tragic past
Jody, 64, is one of a growing number choosing to die on their terms
On Sept. 24, Jen Moss (right) took Jody Wooton to Kauffman Stadium, where they cheered as the Royals beat the Seattle Mariners 10-4 to clinch the American League Central Division on their way to winning the World Series. Both kept a copy of this photo.
BY ERIC ADLER
Jen Moss took to Jody Wooton from the first moment they met.
Jen, 41, the hospice nurse. Jody, her irreverent patient, all but spitting in the eyes of her doctors.
‘Refuse treatment and you won’t live two months,’” Jody remembers one doctor chiding her. Jody, 64 and with a wilting heart patched together with a quilt of 11 stents, glared back at him through rectangular glasses.
“Only two months? I usually get four, you know!”
Jen, whose own life has been touched by violent death in ways few have experienced, so wants to give Jody the good and peaceful death she deserves.
Jen admires her spunk, seeing behind what even Jody’s family recognizes is a sometimes cantankerous cover.
The way Jody sees it: hell if she is going to take more of that “crap,” as she puts it, from some pissant physician who felt it was his duty to pump her full of meds and IV fluids until her body bloated and her fingers swelled like blood sausage. It had happened before.
“Couldn’t wear my clothes,” Jody complains.
Three times over a decade, doctors said she might die from her bad heart. In March 2015, she actually did, but doctors jolted her back.
When she woke in recovery, oxygen and IV lines crisscrossing her body, she excoriated hospital workers.
“I said, ‘What the F are you doing?’ I had a DNR!” — a do-not-resuscitate order. But the hospital couldn’t find its copy, so the doctors brought her back to life.
After that, she was fed up.
“Wouldn’t back down for anything or anybody,” says Jody’s brother, John Kerby, 54 and a trooper with the Kansas Highway Patrol. “Everybody was a friend, unless you gave her reason not to be.”
So that was it. Call hospice, Jody told her sister. Jody was already widowed, terminally ill, no kids.
“I will be here as long as I’m supposed to be here,” she says now. “Nobody is going to tell me that I have to do this right now, or that right now.”
She will die on her terms.
“If I’m doing this,” Jody says, “I’m doing it my way.”
It’s a choice that ever more people are making in the United States. From a handful of nonprofit programs in the 1970s, hospice care has exploded to more than 6,100 programs, most of them for-profit today. Hospice now is a $15 billion a year industry.
Of the 2.6 million Americans each year who die, almost half, 1.2 million, die in hospice care. Their family members can take some semblance of peace knowing they died not alone in a hospital, but among loved ones in the place they saw as home.
Jen works at Kansas City Hospice & Palliative Care, which was one of the first hospices in the area when it opened in 1980 with two nurses and 13 patients.
Today the nonprofit employs 177 nurses, along with chaplains, social workers, counselors and nurse aides, who care for some 2,300 patients a year. There’s Jen’s “blue” team for home care, a “red” team for nursing homes, a “gold” team for both and a “carousel” team for terminally ill children.
The program is only one inside a crowded field of nearly 40 Kansas City area hospices. Elaine McIntosh, president of Kansas City Hospice, calls it “one of the most competitive areas in the country.”
Job chooses Jen
Neither Jody nor Jen anticipated the connection they’d find in hospice.
On a chilly morning in February, the nurse, just over 5 feet tall and with a tumble of shoulder-length black hair, rolls her silver Ford Fusion to a stop across the street from Jody’s home in the Overland Towers Apartments, an eight-story complex for senior citizens at 86th and Farley streets in Overland Park.
She gathers her belongings, grabs her stethoscope and checks her satchel, which contains a tablet computer with the names and medical records of Jen’s 13 patients: another woman, 64, dying of congestive heart failure; a 66-year-old man with Alzheimer’s; a father of three children, age 60, with bone cancer.
Among the patients she will see later: Al Jensen, a 90-year-old Navy veteran of the Normandy invasion who until recently has been as healthy as a war horse. His goal was to live 10 to 20 more years, but that was before doctors discovered more than a dozen cancerous tumors riddling his insides.
“Morning,” Jen says cheerily as she enters the Overland Towers lobby. A smattering of residents with canes or walkers smile and wave from their chairs.
Truth be known, as a self-described optimist and mother of three lively sons, Jen never in her wildest imaginings thought she’d be doing this job.
When she started her nursing career, it was in a hospital’s orthopedic/neurological unit, followed by neonatal intensive care. She moved to a dermatology practice and had a friend who’d become a hospice nurse. Jen recalled thinking, “Who in their right mind would choose to be surrounded by dying people every day?”
At Rockhurst University, one of Jen’s nursing professors spoke glowingly about it.
“My God,” Jen remembers thinking, “that sounds awful.”
But after two years with Kansas City Hospice & Palliative Care, she has come to experience the job’s grace, along with the deep, even spiritual satisfaction that accompanies her connection to patients and their families at one of the most difficult moments in their lives.
More, Jen wonders whether this is what her grandmother was talking about when she assured Jen, especially in her darkest moments, that “God has a plan for you.”
“Sometimes you don’t choose a job,” Jen says. “It chooses you.”
Who better to choose than someone like Jen, with a tragic past few could fathom?
“My sister says I should have been on the Oprah show,” she says. “My whole life has been dramatic, surrounded by death. My life has led me up to this job.”
Living around death
If divine or cosmic plans exist, Jen would argue that hers was set in motion months before she was born. That’s when her biological father, at age 23, died in a car wreck. Her mother, married at age 18, was just 19 and three months pregnant with Jen. Now she was a teenage widow.
Years later, as Jen herself was turning 19 — a year after her graduation from Park Hill High School — she also became pregnant and in 1994 had Neil, the first of her sons. Becoming a nurse had been a lifelong goal, “but college went by the wayside,” Jen says.
Instead, as a single mom, she worked for years as a waitress and bartender on the County Club Plaza, where she fell in love with Eduardo Gonzalez, a handsome dishwasher from Mexico.
They married in Las Vegas. They had a son, Frankie, in 2000. The family of four was happy.
Until, on a September night in 2002, Eduardo went out with his brother. Jen had an ill feeling.
“That night I knew. I just knew,” she says. “I’m like, ‘Don’t go. Don’t go.’ He’s saying, ‘Why not?’”
The call later broke the night’s silence: Come quickly to St. Luke’s Hospital. There had been a fight and, as Eduardo ran to protect his brother, a gunshot. Jen burst through the emergency room doors and was given word.
“I heard screaming,” Jen recalls. It filled her head but seemed far off. The voice was hers, echoing in her ears as she disassociated from the tragedy. “The next thing I know, I’m against the wall on the floor.”
Jen was 28, widowed with two children. Family and friends gathered around her, including her cousin, Tony Rios, who was Jen’s age, and Olivia Raya, Tony’s 26-year-old girlfriend, who was soon to graduate from Rockhurst University. It was Olivia who had been urging Jen to fulfill her dream: Go back to college. Become a nurse.
Then, three months later and days before Christmas, Jen had a dream. It was beautiful.
“I’m sleeping,” Jen says. “It’s like a white light, and we’re like spinning in a circle: me, Tony and Olivia. And they’re telling me that they’re OK, everything is going to be OK. It was just this overwhelming calm. I was like, ‘Oh my God, I have to call him.’”
The next morning, a call came her way.
Tony and Olivia were dead, slain in their Kansas City home in a robbery/drug deal. Olivia, who had just graduated from Rockhurst, had been writing thank-you notes when it happened.
Jen loved her wayward cousin deeply. She had been aware that he dabbled in drugs but had no idea how seriously deep it had become.
Still grieving after the murders, she entered nursing school, where she would hear the professor talk about hospice. Married again in 2009 — to Micky Moss, a Sprint engineer, and after having a third son, Everett — she thought she had something to give.
Jen knew grief and the complications of families. Having experienced violence in life, having seen how impersonal and undignified death could be, she thought maybe she could turn it into something more graceful.
Stories of intimate connections with death are hardly uncommon among those who choose to become hospice workers. Nurse Julie Griggs, 59, who trained Jen, came to hospice 12 years ago after spending 12 years treating patients in hospitals, where she thought so much of care, including death, had turned too clinically rote and impersonal.
Like Jen, colleague and social worker Crispian Paul, 37, had also experienced tragedy, the death of her 16-year-old sister in a wreck when Crispian was 12. Her mother later died of domestic violence. Crispian wanted to help others, possessing what she calls “a comfort level” with dying.
So it is with Jen.
“I do feel like because I have had a lot of loss and have lost a spouse — I don’t know exactly what all families are going through — but I know I can offer them some empathy, and some support and just” — Jen pauses before continuing — “some kindness.
“I mean, I get so much out of it as well. I meet all these families. You know, they’re trusting me with this, this such special, horrible time in their lives. I feel like I can help support them.”
Caring, not curing
At Overland Towers, the elevator carries Jen to the seventh floor. She turns right to Room 707, with the name JODY spelled out in purple, Jody’s favorite color. Black and white stickers of puppy paw prints run up and down the door.
“Jody loves animals,” Jen says.
Cats. Dogs. A ferret. Years back, Jody volunteered for a pet rescue group. Sometimes she had six or seven dogs, plus cats, before she moved to the towers.
Jen, to be sure, can’t precisely predict how much time Jody has to live.
“I’ve see her declining quite a bit in the last three months,” Jen says. “She possibly had a heart attack, a mild one, three weeks or a month ago.”
But there is no going to the hospital. That’s not how hospice works.
“I treat her pain,” Jen says.
As common as hospice has become, workers, indeed, still find it necessary to educate people on exactly how it works.
A common mistake is to link hospice care to euthanasia or physician-assisted suicide. The notion that hospice workers give patients medications to hasten their deaths is utterly wrong.
Instead, the essence of hospice is caring for patients as they move toward the end of life, in peace and with minimal pain. As the National Hospice and Palliative Care Organization puts it, hospice is about “caring” for one on the journey toward death, as opposed to “curing.”
To be eligible for hospice care, a person must be judged by a physician to be terminally ill and — making the choice to no longer seek curative treatments — likely to die in the next six months. Ninety percent do. Half of hospice patients in 2014 died within two weeks.
Jody is rare. She has been on hospice for a year, which is allowed if regular medical evaluations find the patient’s health has continued to decline in a way that makes death likely, and soon.
Once someone is on hospice, Medicare, Medicaid or private health insurance picks up the tab. Hospice patients receive a host of services including regular nursing care, prescriptions for pain and comfort, a hospital bed, a wheelchair, oxygen, help with bathing, social work and chaplaincy services.
In general, there’s no rushing to an emergency room for curative care.
“Medicare won’t cover any hospitalization,” Jen says. “They won’t cover any treatments. No diagnostics. If you’re on hospice, they’re paying for hospice.”
You can change your mind. People do revoke hospice. Some even rally and improve enough to go off hospice, then come back if they again decline. Some people on hospice choose to be resuscitated, wanting to eke out every minute of life possible, even when they are terminal.
“It’s their choice. We respect it,” Jen says.
But Jody, with her DNR order, does not want that. She is not getting better. She and Jen feel lucky that the year they’ve shared has allowed them to bond.
Similarly, Suzanne Fuller, 41, has bonded with Jody as her bath aide.
One of Jody’s problems, diabetes, caused her to lose the bottom half of her left leg. Sometimes Suzanne accidentally will step on her prosthetic foot.
“Ouch!” Jody will yelp, then, “just kidding.”
Big heart, big personality, no complaints. They laugh and laugh. Jen feels the same.
“I’m really going to miss her when she goes,” Jen says.
She knocks on the apartment door and calls out.
“Jody? It’s Jen.”
No answer.
“Jody?” she repeats, her voice a bit more concerned.
Silence still. Jen turns the knob. The door, unlocked, opens.
No sound from the other side, and Jen calls once more.
“Hello?”
Monday: For her own dignity and peace, Jody prays her death will be quick, no bother to anyone.
Rare insight into attitudes to death among the very old
UNIVERSITY OF CAMBRIDGE
Death is a part of life for people over 95 years old, who mainly live day-to-day, concludes a rare study of attitudes to death and dying amongst the very old. The research, from the University of Cambridge and published today in the journal PLOS ONE, finds that this group is willing to discuss dying and their end-of-life care, but is seldom asked.
Improvements in our environment and lifestyles, as well as significant medical and healthcare advances, mean that more and more people are living to a very old age. According to a report published last year by the Office of National Statistics, the number of people aged 90 or more at the time of their death has tripled in the past three decades in the UK.
“Despite the dramatic rise in the number of people living into very old age, there is far too little discussion about what the ‘oldest old’ feel about the end of their lives,” says Dr Jane Fleming from the Department of Public Health and Primary Care at the University of Cambridge, who led the study. “We know very little, too, about the difficult decisions concerning their end of life care.”
In a study part-funded by the National Institute for Health Research, researchers interviewed 33 people over 95 years old from the Cambridge City over-75s Cohort and for 30 of these and for 9 people too frail to be interviewed in person, a ‘proxy’ – a relative or member of care-home staff, for example – about attitudes towards death, dying and end-of-life care. The responses are at times poignant and occasionally humorous, but provide a fascinating perspective on the views of an often overlooked minority.
The age of the older people was so great that most of their contemporaries had died, so death was a regular feature of life and many spoke of living on borrowed time. “As people get older, as their friends die, there’s an element of ticking them off,” said one proxy.
Many of the older people referred to “taking each day as it comes”, expressing thankfulness for where they were in life and content, at this stage, to take life one day at a time, not worrying too much about tomorrow. There was a sense of life ticking along until something drastic happened. “It is only day-from-day when you get to ninety-seven,” said one.
Although one interviewee described only being “three-quarters of the way” through their life, others knew and accepted that they were going to die soon. One son-in-law describes his elderly mother-in-law giving a long-life light bulb to her granddaughter, saying: “Something for you, it’s not worth me having”. Most of the interviewees felt ready to die. “I’m ready to go,” said one woman. “I just say I’m the lady-in-waiting, waiting to go.” Some felt they were a nuisance to others, while others were more desperate in their desire to reach the end, suggesting they had simply lived too long. “Please don’t let me live ’til I’m a hundred,” one woman said to her proxy.
Several proxies discussed conversations that they had had about euthanasia. A son described a vivid memory of accompanying his mother to visit one of her friends who had dementia: “She said ‘Gordon, if I ever get like that, for goodness sake put a…’, it was her words, not mine, ‘put a pillow over my head, will you?'”
Most were not afraid of dying, either reporting that it did not worry them or their proxies saying they had not expressed any worries or fears about it. For some this absence of fear was rooted in positive experiences of others’ dying: One interviewee said of her parents: “They were alive, then they were dead, but it all went off as usual. Nothing really dramatic or anything. Why should it be any different for me?”
Proxies reported that death was rarely talked about: “That generation, they didn’t actually discuss death much, I don’t think,” said one. A few, however, talked openly about death and the future – one proxy described a conversation: “She said, ‘I should think I’ll snuff it soon, don’t you?’ I said, ‘I don’t know, you tell me’ and she just laughs. I mean, she… You can laugh with her about it, you know.”
Discussion of funeral preferences was more common than talking about death, although the extent of discussions varied. Some had made their preferences clear and had made plans themselves and paid for their funerals in advance. Others noted the difficulties of discussing funerals – one proxy described a conversation with her mother: “I said, ‘Do you think you would want to be buried or cremated?’ And she said, ‘Well, cremated, I think.’ I find it very difficult talking to her. I don’t feel that I can. You see, I say to my children ‘Oh, that’s a nice song on the radio. Oh, perhaps I’ll have that at my funeral’. And you couldn’t to my mum.”
The manner of death was of more concern than its imminence. Although some said they had not really thought about dying, many explicitly expressed the wish to die peacefully, pain free and preferably while asleep – to “just slip away quietly.”
“I’d be quite happy if I went suddenly like that,” said one interviewee, snapping their fingers.
When asked whether, if they had a life-threatening illness, they would want to receive treatment that would save their life or prefer treatment that would just make them comfortable, few people chose life-saving treatment. “Make me comfortable” was a far more typical response and proxy informants tended to echo the older people’s dominant preference for comfort rather than life-saving treatment.
Few people wanted to be admitted to hospital in the event of such an illness, though rarely gave reasons. One care home manager explained about her resident: “If she went to [hospital] quite poorly, I think she would be full of anxiety and I think it would exacerbate any illness she had. I think she would find it alarming actually.”
Family members were often aware of preferences. One niece said of her aunt: “She’s dead against going. She doesn’t like hospitals. She doesn’t want to go.” Her aunt, she said just wanted to go to bed and go to sleep without going into hospital – “I think that’s her ideal, just dying in her own home.”
A handful of interviewees viewed well-intended medical interventions as prolonging life unnecessarily, an issue usually, but not exclusively, raised by proxy informants. One 98-year-old couldn’t “see any point in keeping people alive”. One proxy described being annoyed when the doctor gave her relative a pneumonia injection: “She had no quality of life… was ready to go … [but] there was no consultation with us at all about it.”
“Death is clearly a part of life for people who have lived to such an old age,” says Dr Fleming, “so the older people we interviewed were usually willing to discuss dying, a topic often avoided.” However, most had only had discussions regarding end-of-life preferences with health care professionals, rarely with family members. Nonetheless proxies tended to feel they knew their relative’s preferences, though the study found in a couple of instances relatives’ guesses were wrong. A care home manager commented that it was not necessarily with older people themselves that professionals broached the topic: “Historically what happens in hospitals is they tend to… if it’s not asked beforehand they go straight to the relatives. They won’t broach it with the individual, which is actually […] against the Data Protection Act, and it’s nobody else’s business. But it is how the culture of hospitals works unfortunately.”
However, the same care home manager pointed to the practical difficulties of having conversations about end-of-life care preferences: “I’ve not had long discussions, because of [her] hearing problem. It’s very difficult to write them down on paper. And she’s got to shout the answer back at you and you’ve got to re-clarify it.”
“In our previous research we found the majority of people who die in their 90s or 100s are dependent on others because of very high levels of disability and cognitive impairment by the last year of life,” explains Dr Fleming. “Over recent decades most people dying in very old age have moved into care in their final year or died in hospital. To plan services to best support rising numbers of people dying at increasingly older ages we need to understand their priorities as they near the end of life.”
“Now so many more people have reached a great age before they die, it’s important we know about their views and their concerns, particularly in relation to end-of-life care,” says Dr Morag Farquhar, the study’s other lead author. “These are difficult conversations to have and no one wants to have to face their own death or that of a loved one. But having these conversations before it is too late can help ensure that an individual’s wishes, rather than going unspoken, can be heard.”
Nobody lives forever and even though some people may seem to have better odds than others, tomorrow is not guaranteed to anyone. Unfortunately, our society makes death and dying very frightening because the only time people get asked about their wishes and end of life care is when death seems to be looming directly over them. This prevents us from developing any level of familiarity, comfort, and acceptance with this topic.
