Tag: Death Talk

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Why Your Fear Of Dying Alone Means You’re Not Really Living

By Kendra Syrdal

[E]verywhere around me even in modern day 2017, it seems like as a single person I’m confronted with the same message

“Here’s how to find the real love of your life!” Some old guy in a tuxedo exclaims at me from an eHarmony commercial.

“You’re totally like Carrie Bradshaw,” my friends say over drinks when I talk about my job and how I’ve gone out on dates with a few different guys this month. “Now you just need your Big.”

We just don’t want to be alone the countless submissions I read every day proclaim in their honest, heartsick words and in their desperate and painfully lonely headlines.

I’m afraid of a lot of things. I hate driving and am always convinced a semi-truck will run me off of the interstate and send me plummeting to my death. I love paddle boarding but have a weird anxiety about going too far out where the water is a certain level of deep because realistically – who knows what’s down there. The idea of my dog dying when I’m not home makes my eyes start watering just typing it out.

I’m afraid of a lot of things, but dying alone isn’t one of them.

One of my best friends told me a story about how her dad always used to tell her that no matter what, she had to like herself because she was the only person who ever really would ALWAYS be there. And that’s the truth. Some people would say that’s cynical and glass-half-empty, but I say it’s simply honest.

Think about it. Even if you do fall in love, madly in love, the kind of love that people write sonnets about and songs about and paint all over a building as a mural – eventually you’re going to die. And even if that person has been there day in and day out, holding your hand and kissing you despite your morning breath, the only person who you’ll have in those final moments is yourself. All you really have, is you.

So you’d better like you.

I think what we’re really not saying when we say we’re afraid of dying alone is that we’re really not afraid of the alone part, we’re afraid of only having ourselves to hold onto. We’re afraid that somehow, we won’t measure up. We won’t be enough. That somehow, we’re an incomplete puzzle without some else’s edge pieces.

When we say we’re afraid of dying alone we’re really saying we’re afraid that we’ll never be happy with just ourselves, and that we need someone else to dictate that level of completeness to our lives.

But you know what? The little secret that no one wants you to figure out – that the man in the suit hopes you never realize, and anyone writing a “Here Is How You Find The Love Of Your Life And Never Eat Alone Again” book hopes you don’t come to terms with?

A fear of dying alone is really just a fear of not living a life you love. A life you’re excited about. A life that makes you feel enough.

And they never want you to know that crushing that fear is simple. All you have to do is refuse to let it in.

So when you’re worried about eating alone, grab a book that swallows you with its characters and its story and go treat yourself to some Alfredo and wine and give it no second thoughts. If you’re scared of your life being empty, make friends with people who never cease to make you smile and challenge you in the ways you need. Fill your days with a job you love, with travels that blow your mind, and create a life that bears no need for another person other than yourself.

That way, if someone comes alone, they’re just and enhancement, not a requirement.

Your fear of dying alone isn’t sign of being an incomplete or unlovable person — it’s simply a sign that you just need to love yourself enough to stop being so afraid.

Complete Article HERE!

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We’re Bad at Death. Can We Talk?

A dialysis center in Paterson, N.J. Illnesses like renal failure often prove terminal, yet their uncertain progression can make it hard for patients and their families to start the conversation about palliative care and hospice.

By Dhruv Khullar

[H]er last conversation should not have been with me.

I’d just arrived for the night shift in the I.C.U. when her breathing quickened. I didn’t know much about the patient, and the little I did know wasn’t good: She had cancer. Her lungs were filled with fluid. As her breathing deteriorated and her oxygen levels plunged, I searched the chart for her wishes in an emergency. Nothing.

I explained to her how rapidly her condition had worsened and asked if she’d discussed intubation and mechanical ventilation. She shook her head; she didn’t think it would get so bad so fast. Together we called her husband, who had just left for the evening, but there was no answer.

“If we do it, when will I…” she paused. “When will I wake up?”

I hesitated. It was as likely as not that she wouldn’t. I explained that we never leave patients intubated longer than necessary, but when people were as sick as she was it was impossible to know when — or even if — they would be extubated.

“O.K.,” she said. “Do it.”

There are, no doubt, differing opinions on what constitutes a good death. But this, inarguably, was not one.

For years the medical profession has largely fumbled the question of what we should do when there’s nothing more we can do. A new wave of research sheds light on what patients want at the end of life, and who is — or isn’t — getting it.

Despite growing recognition that more care isn’t necessarily better care, particularly at the end of life, many Americans still receive an enormous dose of medicine in their final days. On average, patients make 29 visits to the doctor’s office in their last six months.

In their last month alone, half of Medicare patients go to an emergency department, one-third are admitted to an I.C.U., and one-fifth will have surgery — even though 80 percent of patients say they hope to avoid hospitalization and intensive care at the end of life.

Medicare spending for patients in the last year of life is six times what it is for other patients, and accounts for a quarter of the total Medicare budget — a proportion that has remained essentially unchanged for the past three decades.

It’s not clear all that care improves how long or how well people live. Patients receiving aggressive medical care at the end of life don’t seem to live any longer, and some work suggests a less aggressive approach buys more time. Despite a popular misconception, doctors don’t die much differently: Physicians use hospice care and die in hospitals at rates similar to everyone else.

Two interventions have consistently been shown to help patients live their final days in accordance with their wishes: earlier conversations about their goals and greater use of palliative care services, which emphasize symptom control and greater psychological and spiritual well-being — and which recognize that longer survival is only part of what patients want.

Patients who engage in advance care planning are less likely to die in the hospital or to receive futile intensive care. Family members have fewer concerns and experience less emotional trauma if they have the opportunity to talk about their loved one’s wishes. And earlier access to palliative care has consistently been linked to fewer symptoms, less distress, better quality of life — and sometimes longer lives.

We’ve made significant progress in recent years: The availability of palliative care services has increased 150 percent over the past decade, and compared with patients in other developed countries, older Americans with cancer are now the least likely to die in a hospital (22 percent versus up to 51 percent). But not everyone has benefited from the palliative care movement: Large disparities remain by geography, race and type of illness.

Ninety percent of hospitals with more than 300 beds now have a palliative care program, but only 56 percent of smaller hospitals do. Patients treated at for-profit and public safety net hospitals (known for taking in those who have no insurance) are much less likely than those in nonprofit hospitals to have access to palliative care.

Complete Article HERE!

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Doctors need to be more honest with families facing critical care choices

by Jazz Shaw

This is something of a sensitive topic and though we’ve tackled similar ones before, these stories always give me pause. At issue is a frankly heart wrenching story in the Washington Post from last week by Doctor Yvette Youssef. When she was younger, just entering medical school herself, her mother fell terribly ill, prompting a painful discussion among the family. What followed was a brutal journey through the medical system where it became clear that her mother was dying, but the medical team at the hospital never came out and told the family that until her life was just about ended.

Sometimes it feels like the great unspoken secret between doctors and nurses. The words that we dare not utter to patients and families. Perhaps it is our hope that we’re wrong. Perhaps we dread providing unwanted news. Perhaps we don’t want to face reality or extinguish our patients’ hope.

As a daughter, I felt that sense of sadness and dread, waiting to hear the news that would not be told. It was September 1989, and I was only 20 years old and just beginning my first year of medical school. It was less than a week from my first exam when my mother developed intractable nausea and vomiting. After several days of suffering at home, she decided it was time to go to the hospital.

I distinctly remember her sitting at the dining room table and saying goodbye to each of her seven children, starting with the youngest daughter, who had just started kindergarten, and finishing with me, the eldest, who had just started medical school.

Dr. Youssef was initially in denial, even growing angry with her mother and insisting that with a bit of treatment she would be on the mend and back home again. Her doctors actually encouraged that thinking for quite some time, but when it became obvious to everyone that her mother had known the truth from the beginning she was left with many questions which haunted her for years. What if they had been more honest? Would they have put her mother through all those additional, painful procedures just to wring out a few more weeks of life, all of which was spent essentially in hospice conditions?

This story reminded me of some of the previous research I’d done on the subject. One of the most important essays I’ve ever found on the topic dates back to 2011 and was written by Dr. Ken Murray. It’s called “How Doctors Die” and I’ve referenced it here in the past. His story begins with the tale of an orthopedist who he only refers to as “Charlie” who was diagnosed with pancreatic cancer. The story of how Charlie’s life ended was far, far different from what happened to Dr. Youssef’s mother.

Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds–from 5 percent to 15 percent–albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.

As Murray points out, Charlie’s story isn’t unusual at all… at least among doctors. He knew he was dying and his colleagues who were caring for him knew it too. He could have undergone all of the chemo and radiation and all the rest and possibly squeezed out a few more months, but instead he had his colleague load him up with painkillers and went home to get as much out of his remaining days as he could.

But for most of us who are not inside the profession, that’s not an option which is discussed unless you demand it. Doctors immediately turn to the long, painful and frequently bankrupting procedures described above, allowing the family to think that just maybe their loved one will pull through in the end, even if the medical team knows that it would literally take a miracle.

And if a miracle is coming, shouldn’t they allow God to handle the heavy lifting in His own time?

This doesn’t sound like the sort of thing that could be easily addressed through government regulation even if you wanted to go that route. Perhaps, as Dr. Youssef suggests, the doctors are afraid of being sued. Or maybe they really don’t like giving bad news. But no matter the reason, it’s more of a cruelty than a kindness to the families to not at least tell them the truth and prepare them for all possible scenarios. I’m guessing that the best method to fix this is through pressure coming from the consumer end of the equation. Patients need to be more direct with their doctors, demand blunt answers no matter how painful they may be and similarly call for an honest range of options. Sometimes being at home with powerful painkillers is better than living in a hospital ward getting radiation for weeks on end if it’s not going to do more than allow you to cling on for a few more days. If that’s what you want to do, then so be it. But you should at least have all of the information at hand to make that choice.

Complete Article HERE!

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Med schools to teach how to discuss patients’ goals for care — and for life

How patients answer questions about overall life goals can inform treatment decisions, especially near the end of life.

By Felice J. Freyer

The four medical schools in Massachusetts have jointly agreed to teach students and residents how to talk with patients about what they want from life, so future doctors will know how far to go in keeping gravely ill patients alive.

How patients answer questions about their overall life goals can inform treatment decisions, especially as people near the end of life.

“We’ve trained all doctors to ask people, ‘Do you smoke?’” said Dr. Harris A. Berman, dean of the Tufts University School of Medicine, who met with colleagues last week from the medical schools at Tufts, Harvard, Boston University, and the University of Massachusetts. “We’ve trained people to ask about sexual preference. That used to be a difficult discussion to have.”

Now, Berman said, doctors need to learn how to ask even more deeply personal questions, such as: What most matters to you? What do you need to make life worth living? In what circumstances would you rather not be alive?

The medical schools’ plans to change their curriculums stem from the work of the Massachusetts Coalition for Serious Illness Care, a year-old consortium working to ensure that every resident receives the medical care they want — no more, no less. Dr. Atul Ga-wande, the surgeon and author who helped found the coalition, approached Berman about coordinating an effort among the medical schools.

Meanwhile, on Tuesday, the coalition will mark its first anniversary with the release of a survey of 346 adults who live in Massachusetts, conducted this year. Nearly all residents surveyed said it’s important to talk about their wishes for medical care if seriously ill or near the end of life, but 35 percent had not had that conversation with anyone.

When end-of-life conversations with a health care provider did take place, they were initiated by the patient two-thirds of the time. But three-quarters of those surveyed who said they had spoken with a health care provider about their wishes found that the talk was not difficult.

“People think having the conversation is scary,” said Maureen Bisognano, the coalition’s cochairwoman and senior fellow at the Institute for Healthcare Improvement. “What we’re finding is, when people actually do it, there’s a sense of relief, a sense of peace that you have expressed your wishes to someone.”

Doctors should have this conversation with patients, Berman said, when asking about their medical and family history, before they become ill. And the conversation needs to continue throughout life as circumstances and attitudes change.

Berman said that the schools’ academic deans will collaborate on the best way to incorporate this philosophy throughout medical school and residency training. It can’t be taught in a single class, he said. He expects the curriculum changes to be adopted within a year.

In collaborating on a curriculum change, the medical schools will be building on a successful effort in 2015 to add instruction about prescription painkillers and opioid addiction.

The Massachusetts Coalition for Serious Illness Care started last year, when Blue Cross Blue Shield of Massachusetts brought together leaders in end-of-life care and dozens of organizations concerned with health care and aging. It is funded with $200,000 a year from Blue Cross and the Rx Foundation, which works to improve the quality of hospital care.

With 58 members a year ago, the group has now grown to more than 70. Each organization commits to promoting the coalition’s goals: that all adults have designated a health care decision-maker and have spoken with that person about their wishes; that all clinicians are trained to discuss advance care planning and serious illness care; and that systems are in place to make sure patients’ wishes are documented and honored.

Many of the coalition members had already been working on those issues for years. But they say the coalition bolsters those efforts. “Having to talk about it, being held accountable to a group of our peers — that makes you want to achieve things and achieve them faster. . . . It’s also really a way to hold people’s feet to the fire,” said Anna Gosline, senior director of health policy and strategic initiatives at Blue Cross, which offers workshops in advance care planning for its employees.

Dr. Diane E. Meier, director of the Center to Advance Palliative Care in New York, has been watching the Massachusetts coalition and praised it as “the kind of social movement we need.” Meier, who received a MacArthur “genius” fellowship for promoting palliative care — medical care focused on relieving the stress and symptoms of serious illness — said the coalition is on the right track in focusing on what is valuable in life rather than planning for death.

“The public knows we can’t plan for end of life,” she said. “You can’t know what’s going to happen. Asking us to make decisions about an unknown future is irrational.”

Elaine Seidenberg learned how complicated such decisions can be when she moved into Orchard Cove, a housing community in Canton that offers elders an array of social and medical services.

Seidenberg thought she had everything in order. She had a folder for each of her two children with all the legal forms laying out her end-of-life wishes. But a woman from an Orchard Cove wellness program threw her for a loop when she asked, “What are your goals?”

Seidenberg realized that she had not provided enough information for her children. “Usually when you’re doing end-of-life planning . . . it revolves around things that you don’t want done to you,” she said. “I never really thought about what made my life worth living, what I would be willing to tolerate, and what I wouldn’t.”

After a lot of thought, she realized she most values “giving back to the community, being able to communicate freely and effectively with other people.”

Last year, for the coalition’s launch, Blue Cross commissioned a survey of 1,851 Massachusetts adults. It found that more than half had not named a representative to make health care decisions if they were incapacitated, often because they weren’t sick and didn’t think it was necessary.

This year, surveyors reached out to 860 people from the original survey, and 346 completed a follow-up. The survey was conducted in February and March by the research firm SSRS and the University of Massachusetts Medical School.

Among those who reported a loved one’s death in the past two years, only half rated the care received at end of life as excellent or very good, and a little more than half said their loved’s wishes were followed and honored.

Gawande said those responses represent a “very poor” showing for end-of-life care. When asked about other types of care, such as surgery or cancer care, nearly all patients rate their care as excellent or good, he said.

“This an ambitious agenda,” Gawande said of the coalition’s work. “It’s going to take years to move the needle.”

Complete Article HERE!

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The Life of a Death Midwife

Helping people through the dying process

By Claire Fordham

Olivia Bareham

[O]livia Bareham wants to change people’s perception about death. “I want to break the taboo where we are excited about birth but dread death,” the death midwife said. “What if they were both explosive, incredible events?”

Part of a death midwife’s job is to sit with the dying at the end of their life. “To be able to bear witness to their dying process,” said Bareham. “The midwife is also looking beyond the last breath. We hold the space, not just for dying but for the funeral, burial or cremation rituals and even beyond that, to help the family and friends grieve.”

It’s hard to accept a terminal diagnosis.

“Some people can’t believe they are dying,” Bareham said. “It is unbelievable. It’s unbelievable that we’re even here. Once you play with the idea of the unbelievable-ness of everything, it’s not so unbelievable that you’re dying.”

Bareham believes a funeral or celebration of life service and properly grieving are important parts of the process.

“It’s declaring that the lost loved one counted and mattered and meant something to those left behind,” she said. “If you miss that, it’s sad, but perhaps it’s even more sad for the family and friends who have lost an opportunity to lean into their own mortality.”


Loved ones decorate a simple casket for a home funeral. Wooden caskets are also available. This cardboard one holds up to 200 lbs. weight.

Bareham has this advice for the living and dying: “Build a relationship with death. Befriend death. Be open to every little nuance of what it means to be alive — which includes pain, sorrow and loss — so you’re not thrown off by a catastrophe. Write your healthcare directive and death care directive because you never know when the end will come. And make peace with anyone with whom you have had conflict.”

All passings are different and not everyone gets a terminal diagnosis where they have time to plan their final moments. Having helped more than 200 people in and around Malibu as they die, or arranged their home funeral, Bareham has an idea how she’d like her own death to be.


Learning to lay a body in honor on a Death Midwife course. One of the attendees plays the body here.

“Some people want to be left alone at the moment of death. I wouldn’t mind having people in the room with me, but I wouldn’t want them touching me and close to the bed. Having a dear friend who totally gets me sitting vigil and holding the space is an anchoring that makes the dying feel safe.”

Just as there’s a popular movement toward natural childbirth, Bareham prefers the idea of a natural death. She isn’t saying don’t ever take morphine to help ease any pain, but suggests not taking so much that you aren’t aware of what’s going on. She may not want someone holding her hand or stroking her head at the end, “or telling me it’s OK to go,” she said, but is happy to do that for others, if that’s what they want.

For Bareham, a good death would be where she is aware of what is happening, where she is prepared and feels a sense of completion and fulfillment of the life lived — “so my dying is just another breath. I am ready and excited for what’s next.”

Bareham advises against waiting until you know you’re dying to forgive people who have hurt you or ask forgiveness of those you might have hurt. “It happens so quickly, and then you’re lost and scrambling. Try to stay in a state of consciousness that if death came, if a massive earthquake hit right now, you’d have a level of excitement,” she said.

People from all walks of life complete Bareham’s death midwifery course. “More young people in their 20s are doing it because they feel something is missing in our culture regarding death,” she described. “Some have been volunteering at a hospice, or are social workers. Others are intrigued with the idea that after the last breath, you can keep the body at home for three days and arrange a home funeral. Or they’ve had a horrible experience of death and are looking for healing.”

Bareham, who is fighting fit and looking forward to a long life, doesn’t find her career depressing.

“Death is just another chapter in life’s journey,” she said

Complete Article HERE!

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People who see death and trauma each day ask: WGYLM?

UC San Diego Nurses use a clever guerrilla marketing campaign to get their colleagues thinking about advanced directives.

By Paul Sisson

[O]nly one in four Americans has written down their end-of-life wishes in case they end up in a hospital bed unable to communicate — despite high-profile cases over the years that have plainly shown the emotionally painful, expensive and sometimes lawsuit-ridden consequences of not making those wishes known in advance.

A group of UC San Diego nurses and doctors is engaged in an effort to increase that ratio, building a wide-reaching campaign that started with just five letters and a question mark.

Operating like a guerrilla marketing group, albeit with the approval of two key hospital bosses, they began posting signs at both UC San Diego hospitals and its seven largest clinics. The signs simply asked: “WGYLM?”

At first, they refused to explain to others what those letters meant.

“We considered that a great victory to hear, that we were irritating people with our message. It totally primed them to be on the lookout for the answer,” said Dr. Kyle Edmonds, a palliative care specialist.

In March, the letters expanded from a five-letter bloc into the question, “What Gives Your Life Meaning?” There were small signs spelling it out and seven chalkboard-size whiteboards with the question written in large letters at the top. A bucket full of Post-It notes and pens was attached to each whiteboard display and very quickly, people wrote and pasted up their responses.

God has figured into many of those messages. There also have been plenty of first names, heart outlines and attempts at humor — including a note that said, “cheese biscuits.”

Some have been quite dark. Politics have been mentioned as well, including President Donald Trump and his proposed border wall.

The next step for the project group, after thousands of notes had built up, was to add the kicker question: “Have you told anybody?”

It’s not enough to answer the question for yourself, said Edmonds and colleague Cassia Yi, a lead nurse at UC San Diego. They want people to tell their loved ones — in writing — what matters most to them, including how they want to be treated upon death or a medical emergency.

The campaign’s organizers hope that getting people to think about the best parts of their lives will provide an easier entry point for end-of-life planning.

The National Hospice and Palliative Care Organization recommends that everyone fill out an advance directive to make their wishes known in writing. Also often called “living wills,” these are witnessed legal documents that confer medical power of attorney to the person you designate if two doctors certify you are unable to make medical decisions.

Each state has its own form, and California’s asks people to specify whether they want a doctor to prolong their life if they have an irreversible condition “that will result in … death within a relatively short time or if they “become unconscious and, to a reasonable degree of medical certainty … not regain consciousness.”

This has been fraught territory, with many high-profile cases in the courts of distraught families wrestling over the decision to remove life support without any knowledge of the patient’s true wishes.

That includes the case of Terri Schiavo, who was left in a persistent vegetative state after a heart attack in 1990 caused severe brain damage. Her parents clashed with her husband, Michael, who asked the court to order her feeding tube removed in 1998 on grounds that she would not have wanted to live in such a state. Because she had no living will, it took years of very public legal wrangling before life support was disconnected on March 18, 2005.

Yi said she and other nurses feel this type of gut-wrenching stress every time a “Code Blue” page sends them scrambling for a patient who needs immediate resuscitation. Most of those patients don’t have wills or other written indications of their wishes in place, even though every patient is asked if they have an advance directive upon admission to the hospital.

“Advanced care planning wasn’t happening until people were coding out. There is nothing advanced about that,” Yi said.

Even before the current awareness campaign, Yi and her colleagues had worked with computer experts to add special categories to UC San Diego’s electronic medical records system that provide a single collection point for this kind of information. Previously, such details could be entered in dozens of different places, depending on the whims of whoever was taking notes at any given moment.

The project team also got the computer programmers to add a shortcut that allows caregivers to quickly access an advance-directive template.

Since the revamped system went live in February 2015, Edmonds said there has been a 469 percent increase in the number of patient charts that include some sort of information about end-of-life care.

But the project was not reaching every patient — or enough of the university’s medical staff.

Yi recalled a trip that some UC San Diego nurses took to the CSU Institute for Palliative Care at Cal State San Marcos. There, they saw “WGYLM?” signs and learned what the acronym meant. At the time, Cal State San Marcos was in the early stages of creating the “What Gives Your Life Meaning?” project.

The nurses thought: Why not adopt that program for UC San Diego as well? They liked that the operation could be rolled out in a provocative way and that it didn’t simply ask people to fill out advanced directives.

“It just makes an introduction in a more positive, intriguing light,” Yi said.

So far, nearly 1,300 employees in the UC San Diego Health system have taken the pledge to prepare their end-of-life documents and talk with their loved ones about these issues.

Sharon Hamill, faculty director of the palliative care institute at Cal State San Marcos, said the “WGYLM?” campaign has been held on that campus for three years in a row and has spread to sister campuses in Fresno and Long Beach.

She said the signature question was created by Helen McNeil, who direct’s the California State University system’s multi-campus palliative care institute, which is also housed on the San Marcos campus.

Hamill also said the message resonates strongly with people of multiple generations, including college students taking care of ailing grandparents or even parents.

“I love it when one of them stops me somewhere and tells me they saw one of the signs and were thinking about it all the way to class,” she added.

For more information about advance directives, go to nhdd.org.

Complete Article HERE!

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They knew their unborn baby would die — just not like this

Royce Young and his wife, Keri, meeting their daughter, Eva, after she was stillborn.

By Lindsey Bever

[F]or Royce Young, writing their story was not only a way to work through it, he said, but also a way to remember it.

Nearly five months ago, Young and his wife, Keri, found out that their unborn daughter had a rare birth defect called anencephaly, a condition in which the baby does not develop a vital part of the brain or top of the skull.

If their daughter was born, she would die all too soon. If the pregnancy were terminated, she would not live at all.

So the grief-stricken parents made a decision: Their daughter would be born — then they would donate her organs.

“We decided to continue, and chose the name Eva for our girl, which means ‘giver of life,’” Young, an NBA writer for ESPN.com, wrote Thursday on the blog Medium. “The mission was simple: Get Eva to full-term, welcome her into this world to die, and let her give the gift of life to some other hurting family.”

But Eva died before she ever made it into the world.

Young, a 31-year-old father from Oklahoma City, wrote a gripping and gut-wrenching 3,200-word article titled “We spent months bracing and preparing for the death of our daughter. But guess what? We weren’t ready.”

From the start, Young said, he and his wife had planned to document every moment of their newborn’s life, no matter how short it turned out to be — introducing her to her big brother, Harrison, and her grandparents, and holding, hugging and kissing her for the first and last time.

After Eva was tragically and unexpectedly stillborn on April 17, Young said he wanted to share their daughter’s legacy.

So he did — and his post has swept the Internet.

“It’s neat to see that our little girl, that people know her name,” Young told The Washington Post on Friday. “Her legacy is something that’s impactful.”

[‘We had no hope’: The amazing story of the baby born with his brain outside his skull]

Not long after the Youngs learned of their daughter’s terminal diagnosis late last year, Young said he started writing about his wife, Keri — how “tough” she was through it all.

In February, while covering the NBA All-Star Weekend in New Orleans, Young said, he posted it on his Facebook page. Someone shared it, and the couple ended up on ABC’s “Good Morning America.”

People knew about the Youngs’ wishes for Eva. And when she was stillborn this month, some mistakenly thought they had been successful in their mission.

“People kept reaching out to us after we said that Eva was born and that she had passed away,” Young told The Post. “People were like, ‘That’s amazing; I bet she saved so many lives.’ And to know how it actually happened, with her dying in Keri’s womb and everything and us not being able to donate her kidneys or liver, it was kind of getting more and more depressing to see people thinking that’s what happened.”

Young wrote in the Medium piece about the sorrow he felt watching his wife carry their dying child to term as well as the unexpected joys of the pregnancy.

“We got excited to be her parents,” he wrote. “I think a big part of that was connected to the decision we made to continue on, which was empowering. She had a name, an identity, and a purpose.”

And Young wrote about the tragic moment the couple discovered that their daughter had died in the womb:

On Sunday, April 16, the day Keri officially hit full-term at 37 weeks, suddenly, we were in the two-week window. In two weeks, we’d be prepping to welcome our baby girl into the world, and preparing to say goodbye to her. I planned on sitting down that day to write Eva a letter, like I did before Harrison was born, to give him on his 18th birthday. She’d never read it, but I was going to read it to her. Keri didn’t feel Eva move much that morning, but we both brushed it off and went to lunch. We came home, put Harrison down for a nap, and Keri sat down in her favorite spot and prodded Eva to move. She wouldn’t.

We started to worry. Keri got up, walked around, drank cold water, ate some sugary stuff. She sat back down and waited. Maybe that was something? We decided to go to the hospital.

“This is going to be bad, isn’t it?” I said.

Keri erupted into tears and her body shook. I had my answer.

We held on to hope that we were just being overly anxious, and didn’t take any bags. We arrived, and a nurse looked for a heartbeat on the doppler. Nothing. Not unusual because it was sometimes hard to find because of the extra fluid. They brought in a bedside ultrasound machine and looked. It seemed that maybe there was a flicker of cardiac activity. They told us to get ready to rush in for a C-Section. I freaked out. I just remember repeating, “I’m not ready I’m not ready I’m not ready I’m not ready.” I was supposed to have two more weeks. What about the plan? What about Harrison? What about Eva’s aunts and uncles and grandparents? What if they couldn’t make it in time? …

They brought in a better ultrasound machine. Keri and I had seen enough ultrasounds to immediately know. There was no heartbeat. Eva was gone before we ever got to meet her. The brain controls steady heart functions, and Eva’s finally gave out.

Keri rolled onto her side and put both hands over her face and let out one of those raw, visceral sobbing bursts. I stood silently shaking my head. We had tried to do everything right, tried to think of others, tried to take every possible step to make this work, and it didn’t. No organ donation. Not even for the failsafe, research. We felt cheated. What a total rip-off. The word I still have circling in my head is disappointment. That doesn’t really do it justice, because it’s profound disappointment. Like the kind that’s going to haunt me forever. The kind of disappointment that is going to sneak up on me at different times, like when I’m mowing the yard or rocking Harrison or driving to a game.

Since there was no reason to control variables anymore, the doctors induced Keri into labor. The rest of Sunday and into Monday morning were the darkest, most painful hours of our lives.

In the end, Young wrote, he and Keri were able to donate their daughter’s eyes, which he called “the best moment of my life.”

“The timing of it all is just something I can’t explain,” he wrote on Medium. “It wasn’t what we planned or hoped for, but it was everything we needed in that moment. I buried my head in my arms and sobbed harder than I ever have. Keri put her hands over her face and did the same. Happy tears.”

Young told The Post that this had been “the most painful, excruciating five months of my life” but that he has no regrets.

“This is something that’s life-defining, and I think Keri and I feel like we’re going to be better for it,” he said. “That’s something people often say: ‘I’m so glad this happened to me. I’m going to be a better person now.’ But I wish this had not happened to me. I wish that I had a perfectly healthy daughter right now to hold, and I wish my son, Harrison, had a little sister. And it kills me that we had to go through this, but the main thing we wanted to try to do is regret as little as we could, and when Keri and I are 40 or 50 years old, I hope we can say we handled this the best we could given the circumstances.”

The Youngs.

Complete Article HERE!