You might think watching people die would depress a person. It actually taught her how to live.
Bronnie Ware spent years as a palliative care nurse, helping patients be as comfortable as possible in the time just before their deaths. She compiled their stories and the most repeated regrets she heard them utter in their final days.
Do you ever imagine what the final years and months and days of your life will be like?
Shared originally on her blog, ” Inspiration and Chai,” here are the top five regrets, with quotes from her blog as she recorded them.
Regret #1: I wish I’d had the courage to live a life true to myself, not the life others expected of me.
Look at yourself in the mirror. Are you living your best life right now? What’s stopping you?
“This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made. Health brings a freedom very few realise, until they no longer have it.” — Bronnie Ware
Regret #2: I wish I hadn’t worked so hard.
This one speaks for itself.
Regret #3: I wish I’d had the courage to express my feelings.
What if getting the words out is essential to your growth as a human?
“Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming.” — Bronnie Ware
Regret #4: I wish I had stayed in touch with my friends.
Is there someone you treasure who you haven’t spoken with in much too long?
“Everyone misses their friends when they are dying.” — Bronnie Ware
Regret #5: I wish that I had let myself be happier.
If you didn’t wake up joyful today, why not? What can you do to change that?
“This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called ‘comfort’ of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content, when deep within, they longed to laugh properly and have silliness in their life again.” — Bronnie Ware
Were there any regrets on this list that felt familiar to you? Others that you didn’t see listed?
These are five universal wake-up calls we all need to be reminded of. There’s no shame in tagging all the friends you need to call when you share this.
For Dr Kate Granger, preparing for a ‘good’ death has allowed her to accept her diagnosis of incurable cancer
Kate and her husband Chris at the renewal of their wedding vows
“Facing death is not something anybody ever wants to contemplate. But that is exactly what I’ve had to do for the past five years. At the age of 29 I had the perfect life. Happily married, successful career, great network of friends and family, beautiful home and in the early stages of planning to conceive our first child. My life was all I’d ever dreamed it would be. But all that was shattered into minuscule pieces when the cancer sledge hammer hit us, and we discovered my incurable diagnosis; a diagnosis that came completely out of the blue and destroyed our lives as we knew them.
As a doctor specialising in the care of older people I had some familiarity with dying. I’d sat and held the hands of patients as they drew their final breaths. I’d comforted families through difficult conversations around end of life care for their loved ones and their eventual bereavement. But now it was my own mortality that had come into a sharp, unavoidable reality.
The cancer was very aggressive and advanced; my kidneys had failed; I was in intractable pain. There really was no hope of cure no matter how optimistic your view. As a clinician I didn’t know any way to get through something so life changing, other than addressing it head on. Within days of discovering I had bone and liver metastases, I had made the decision that I did not want to undergo cardiopulmonary resuscitation. I wrote my Bucket List. I made a will. I started work on a memory box for Chris. I specified my end of life care preferences in writing. Attending to these practical considerations gave me a peace of mind that allowed us to accept what was happening, and then move on with living in the present with a degree of calmness.
Thoughts about death often creep into my consciousness though. I wonder about what it will feel like, what symptoms I might experience and I reflect frequently on my personal vision of a peaceful, ‘good’ death. I’ve picked out my favourite music, particular candles with soothing scents and the books I’d like my Mum to read to me. I desperately want to die at home, surrounded by the people who love me. These preparations are designed to create an environment with comforting childhood memories, making me feel as safe as I can despite the horrendous circumstances.
However given my professional experience I know only too well that I may not achieve my serene death ambitions. I know that my symptoms may become uncontrollable at home, especially if I develop a bowel obstruction. I fear being bundled into an ambulance and carted off to hospital. I fear my eventual loss of independence. I fear not being strong enough to see it through to the end.
I have been extremely publicly transparent about my health problems by writing books and using social media. Looking back I think this is thanks to my inner teacher; I want to share my experiences to improve care for other patients. I felt so useless and lacking in purpose at the beginning of my illness. Getting my laptop out to write the whole sorry saga down seemed a natural response. I needed to process what I was going through and I wanted to emphasise how healthcare professionals’ behaviour impacts the people they look after. This project has now gone one step further, and I plan to share the end of my life on Twitter using the hashtag #deathbedlive. Unexpectedly I now have a huge social media following, and I hope one of my final legacies will be to promote a national conversation in society around death and dying by using this powerful voice.
I’m one of the lucky ones. I genuinely believe that. I have the support of an amazing husband, who has been there for me every single step of the way. He has made our lives truly incredible and I never know what the next lovely surprise might be. We are able to live comfortably in our own skins, with the lurking existence of the death gremlin, because we are honest and open with each other. Talking about death is never going to be an easy task, but Chris knows my wishes and I am absolutely sure that he will protect them right up until the end.
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.
Palliative care is still widely misunderstood by many Canadians. Here are 10 common myths we often encounter. Help dispel these myths by sharing the facts with family members and friends, colleagues, patients and client.
1. Myth: Palliative care hastens death. Fact: Palliative care does not hasten death. It provides comfort and the best quality of life from diagnosis of an advanced illness until end of life. See also:Palliative Care: Dispel the myth of hastening death
2. Myth: Palliative care is only for people dying of cancer. Fact: Palliative care can benefit patients and their families from the time of diagnosis of any illness that may shorten life. See also:How do you know when someone is ready for palliative care?
3. Myth: People in palliative care who stop eating die of starvation. Fact: People with advanced illnesses don’t experience hunger or thirst as healthy people do. People who stop eating die of their illness, not starvation. See also:Can you provide some guidance about oral nutrition at the end of life?
4. Myth: Palliative care is only provided in a hospital. Fact: Palliative care can be provided wherever the patient lives – home, long-term care facility, hospice or hospital. See also:What is Palliative Care?
5. Myth: We need to protect children from being exposed to death and dying. Fact: Allowing children to talk about death and dying can help them develop healthy attitudes that can benefit them as adults. Like adults, children also need time to say goodbye to people who are important to them. See also: Don’t Use the ‘D’ Word: Exploring Myths about Children and Death
6. Myth: Pain is a part of dying. Fact: Pain is not always a part of dying. If pain is experienced near end of life, there are many ways it can be alleviated. See also: Pain
7. Myth: Taking pain medications in palliative care leads to addiction. Fact: Keeping people comfortable often requires increased doses of pain medication. This is a result of tolerance to medication as the body adjusts, not addiction. See also: Pain medication myths: Addiction and hastened death
8. Myth: Morphine is administered to hasten death. Fact: Appropriate doses of morphine keep patients comfortable but do not hasten death. See also:Does morphine make death come sooner?
9. Myth: Palliative care means my doctor has given up and there is no hope for me. Fact: Palliative care ensures the best quality of life for those who have been diagnosed with an advanced illness. Hope becomes less about cure and more about living life as fully as possible. See also:Health Care Decisions: An Approach to Decision Making and Advance Care Planning
10. Myth: I’ve let my family member down because he/she didn’t die at home. Fact: Sometimes the needs of the patient exceed what can be provided at home despite best efforts. Ensuring that the best care is delivered, regardless of setting, is not a failure.
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.
Since Oregon’s Death with Dignity Act was passed in the mid-1990s, doctors have had to reconcile their Hippocratic oath with prescribing medication to end a life. Here are the experiences of some doctors in the state.
Dr. Eric Walsh
In 1994, Dr. Eric Walsh wrote an article in a local newsletter explaining why he voted against legalizing medical aid in dying. Walsh, a medical director of a small hospice, wrote that it would be impossible for a doctor to know a patient well enough to make such a crucial decision.
By the time the law came into effect in 1997, Walsh realized that he had written about one of the central fallacies of being a doctor — that you can know a patient better than they know themselves. “It’s the patient who has the disease, not you,” he said. “I just have to be there to listen to them, decide they’re not mentally ill, decide they have six months to live, and let them control the timing and manner of their death.”
Walsh said the first request he received was a profound emotional experience. The patient, a well-educated man with a strong marriage, had terminal cancer and was in so much pain he had to lie on the floor of the doctor’s office. Walsh wrote the prescription, but patient never used it.
“I can’t tell you how relieved I felt,” Walsh recalled. “It’s like an insurance policy against suffering.”
The palliative-care doctor has written 20 such prescriptions in 18 years, but one of his patients was Brittany Maynard, a 29-year-old newlywed with a terminal brain tumour who moved from California to Oregon for aid in dying in 2014. She became the public face of the assisted-death movement in the U.S., prompting her home state to recently adopt legislation.
Walsh’s voice changes as he speaks about Maynard, making clear the emotional bond forged between doctor and patient in these cases.
“She was an amazing human being,” he said. “She was brilliant. She spoke in paragraphs that sounded as though she had written them out and edited them … She was very clear-eyed and thoughtful and intent.”
Asked how he felt when she used the medication, he replied simply, “really sad.”
Dr. Kenneth Stevens
Jeanette Hall was inconsolable the first time she met Dr. Kenneth Stevens. It was 2000, and Hall had been diagnosed with inoperable anal cancer. As she was leaving the hospital, she said a staff member asked her whether she had a burial plot. She was unequivocal — she wanted aid in dying.
Stevens, an oncologist, explained that while her tumour was inoperable, it could be treated with chemotherapy with a good chance of success. Hall refused. Without treatment, she had six months to live, meaning she qualified for aid in dying.
After about four weeks of urging her to do the treatment, Stevens learned she had a son training to be a police officer. “Wouldn’t you like to see him graduate?” he asked her. “Wouldn’t you like to see him get married?” Finally, Hall agreed to the chemotherapy. The tumour melted away.
Sixteen years later, Hall credits Stevens with saving her life. “If it weren’t for Dr. Stevens, I wouldn’t be here,” she said, beaming. “It’s great to be alive.”
Doctors who support the law are dismissive of Hall’s story. Dr. David Grube said any reasonable doctor would have urged her to undergo the treatment, while Dr. Peter Reagan said the story is proof the law enabled doctor and patient to have difficult conversations openly.
But Stevens, president of opposition group Physicians for Compassionate Care and who, like the group’s national director Dr. William Toffler, lost his wife to cancer, takes a different view. He said Oregon’s law has allowed some doctors to lose touch with their purpose — to cure patients.
“The law is to protect the physician, it’s not to protect the patient,” he said. “As long as the patient qualifies, it’s a licence to kill.”
Dr. Peter Reagan
When Dr. Peter Reagan voted for medical aid in dying in 1994, he was more concerned with another measure on the ballot to fund libraries. He hadn’t thought much about how the Death with Dignity Act would impact his work as a family doctor, until the law finally came into effect in 1997.
The following year, he was referred an 84-year-old patient who’d had breast cancer on and off for 30 years. She was suffering, terminal and unwavering in her request for aid in dying. “She was very, very clear,” Reagan recalled. “There was just not a scrap, shred of doubt about her.”
It was only when he called the pharmacy that he learned he was the first doctor in the state to prescribe the medication. Although doctors are not required to be present, he was with her family when she died. Before she took the pills, she asked him to kiss her on the cheek.
“Somebody says to you, ‘I want to talk about the possibility of aid in dying,’ all of a sudden you’re in their family. Suddenly, you’re intimate,” he said. “With her, I almost felt like I was on board. I was dying too. The idea that I would wake up the next morning — I hadn’t thought about that until it happened.”
Reagan, now retired and a spokesman for advocacy group Compassion and Choices, said the emotional intensity of the experience grows with each person who requests aid in dying. He said he never suggests using the law to anyone and prescribing the pills is a difficult thing to do every time.
“People have to talk you into it,” he said. “The moment when they actually successfully talk you into it and you say, ‘You know what, I see your point, I respect it so much and I respect you so much that I will do this for you,’ that moment is so filled with relief and appreciation.”
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.
