We’re in the middle of a revolution on death

Mary Klein, center, speaks at a news conference in Washington on April 5, 2018, to urge D.C. officials to educate doctors about the city’s “death with dignity” law.

By Jon Meacham

Jon Meacham is the author of “The Soul of America: The Battle for Our Better Angels.”

Tuesday was to be the day — in the morning, because everything was taken care of. The goodbyes had been said, the tears shed, the coffin handmade. In the spring of 2018, Dick Shannon, a former Silicon Valley engineer with untreatable cancer, took advantage of California’s “death with dignity” law to end his own life once all other medical possibilities had been exhausted.

“My observation about the way people die, at least in America, is they . . . are not allowed the opportunity to be part of the process,” Shannon explained. “For my way of thinking, the part that bothers me just immensely is not being allowed to be part of that process. It’s my death. Go with what you believe, but don’t tell me what I have to do.” Discussing the ultimate decision with his doctor, Shannon remarked, “It’s hard to fathom. I go to sleep and that’s the end of it. I’ll never know anything different.” He paused, then said simply: “Okay.”

When the day came, Shannon was ready. The end-of-life medical cocktail was mixed in a silver stainless steel cup, and he drank it in front of his loving and tearful family. “I’ve accepted the fact that I’m dying,” he’d said earlier. “There’s nothing I can do to stop it. Planning the final days of my life gives me a sense of participation and satisfaction.” As he prepared to slip away, he told his family, “Just know that I love you — each and every one of you.”

America is becoming ever more like itself when it comes to death. From Walden Pond to Huck Finn’s lighting out for the territory, we’re a nation of individualists, shaped and suffused by self-reliance and a stubborn allegiance to the live-free-or-die motto of the Revolutionary era. With this twist: Baby boomers and their successor generations are insisting on being free to take control of death itself. Innovation, creativity and customization — the hallmarks of our time, an age in which we can run much of our lives from our mobile phones — are now transforming both how we die and the mechanics of remembrance that come afterward.

The coming revolution in death — and Dick Shannon’s story — is laid out with uncommon wisdom in a powerful, new HBO documentary, “Alternate Endings,” which debuts Aug. 14. Only eight states and the District of Columbia have death-with-dignity laws, but three of those states — Hawaii, Maine and New Jersey — have put their statutes on the books within the past year. And 18 other states considered such laws in the 2019 legislative season.

The movement has not attracted the same attention it once did; in the 1990s, Jack “Dr. Death” Kevorkian, the right-to-die advocate, drew considerable public alarm. As the documentary by Perri Peltz and Matthew O’Neill makes clear, the conversation has entered a new and compelling phase now that Americans are thinking about death as something as disintermediated as commuting, dating and shopping.

The United States has a long history of rethinking the rituals of death. Embalming became part of the popular understanding and tradition of death during the Civil War; the task then was to preserve the bodies of dead soldiers so their families could see them one final time. Abraham Lincoln may have done the most to raise the profile of embalming when he chose first to embalm his 11-year-old son and then when his own corpse was embalmed for the long train ride home to Springfield, Ill., after his assassination.

Now the death industry in the United States has evolved with the culture. For many, corporate consolidation has reshaped a funeral home industry, which was once made up almost entirely of local, family-owned companies. (And which, as Jessica Mitford wrote in her 1963 book “The American Way of Death,” unctuously gouged grieving families.) The Internet has disrupted the casket industry with Walmart and others selling directly to families. As “Alternate Endings” reports, there are now green burials (including using a loved one’s ashes to help restore coral reefs), space burials and even drive-through, open-casket viewings.

Once the great gatekeeper of life and death, organized religion, too, is losing its sway. In an era in which friends routinely ordain themselves on the Internet to preside at weddings, the rising numbers of Americans who are “unaffiliated” with any particular faith mean that institutions that once gave shape to life and meaning to death are being gradually supplanted family to family.

The issues raised by Dick Shannon’s story are the most profound. Many religious authorities — notably the Roman Catholic Church — oppose euthanasia (Greek for a “good death”). Such teachings face a generational head wind as more people (and states) move from deferring to institutions to simply making their own decisions. The questions involved are intricate and complex and painful — but it is plain to see that we are witnessing another rite of passage undergoing an irrevocable disruption.

When the Shannons held a “living wake” for friends to say goodbye to Dick, the family hung a banner on the wall: “Life is what you celebrate. All of it. Even its end.” Before passing, Shannon said, “I want it to be on my terms.” Given that death comes for us all, so, too, will many of us have to confront the agonizing decision that he faced with grace.

Complete Article ↪HERE↩!

August 13, 2019August 12, 2019

I’m an ICU nurse. I know I need an end-of-life directive.

So why can’t I bring myself to write it?

By Andrea Useem

I of all people should know how to do this. As an ICU nurse, I see every day how agonizing it is for families to make end-of-life care decisions for loved ones who have not made their wishes clearly known. I know what I want. I know what the legal options are. But when I sit down to fill out the papers, I stall.

The form remains incomplete.

All of my experience urges me to act. I think of the anguished adult son trying to decide whether his elderly, unconscious mother would want to live permanently connected to a ventilator.

“Pray for me that she dies before I have to make a decision,” he told me. If she had made her choices known before medical calamity struck, her son would have the peace of mind of carrying out her wishes, one way or another.

I think of another family, where two siblings — one of them a physician — came to blows in the hospital waiting room because they could not agree on whether to stop aggressive treatment for their father, given that his organs were shutting down, one by one.

Of course I want to reduce what’s called the “decisional burden” on my own family by making my choices clear in case I become too sick some day to decide for myself. I just can’t bring myself to translate my well-informed preferences into a legal document such as an advance directive.

I’m not alone. Although advance-care planning has other well-established benefits, including an increased chance that patients will receive the care they want, only one-third of Americans have any sort of advance directive, according to a 2017 study led by researchers at the University of Pennsylvania.

And health-care professionals like myself are no exception. In her 2017 book “Extreme Measures: Finding a Better Path to the End of Life,” physician Jessica Nutik Zitter explained why she avoided the task of translating her medical wishes into a series of yes/no check-boxes that make up many advance directive forms.

“My feelings are too complex, too nuanced, to fit into one little white square,” wrote Zitter, who is board certified in both palliative care and critical-care medicine.

So why is this undertaking so difficult? And how can we all get better at completing this vital task?

The first barrier to advance-care planning is often understanding what is involved. According to G. Kevin Donovan, director of Georgetown University’s Pellegrino Center for Clinical Bioethics, an advance directive is a document that usually includes two separate elements: naming a health-care surrogate and creating a living will.

A health-care surrogate or “proxy” is an adult who is legally empowered to make medical decisions for you when you can’t make them for yourself. Many think they have this base covered when they name a durable power-of-attorney. But a power-of-attorney directive does not automatically allow for decision-making power in the health-care realm.

“They can sell your stock, but they can’t take you off a ventilator,” Donovan said.

A living will offers you a way to say in advance what sorts of medical interventions you would want. For example, the form we offer at our hospital asks whether you would want “artificial nutrition” — meaning liquid nutrients delivered through a tube — if you were expected to die soon.

The problem with these forms is that they rarely capture the complexity of real-life medical decision-making, Donovan said.

In the intensive care unit where I work, we recently had a woman in her 60s whose cancer had come back with a vengeance. She was awake and talking with her family, but her vital signs were deteriorating quickly. We asked the patient and the family what they would want if she could no longer talk and make decisions, and they requested an advance directive form.

When I came to check on them later, I found the patient and family puzzling over the form’s questions, such as what kind of care she would want if she were in a “persistent vegetative state.” The abstract scenarios were almost irrelevant to their immediate situation.

I redirected the conversation to the concrete choices in front of them: Would she want a breathing tube put in her throat in the next 24 hours when her lungs began to fail? Or to have a large IV inserted in her neck to start dialysis after her kidneys stopped working? Thankfully for the family, the patient made her own decisions and shared these with our physicians. She said she didn’t want any “heroic” interventions, and she died 48 hours later, with her family at her bedside.

To me, filling out a living will as a relatively healthy person feels like ordering food for a meal I will eat in 20 years: It seems impossible to predict what I will want in that moment. Is it good to be vague and write, “I want to be kept comfortable?” Or better to be highly specific and say, “I never want to have a feeding tube inserted?”

Because living wills are difficult to translate into real-life decisions, many experts now advise focusing on not only naming the right person as your health-care decision-maker but also talking in depth with that person about what’s important to you.

“The best advanced directive is to name an educated person as your health-care surrogate,” said Douglas Houghton, an acute-care nurse practitioner and director of advanced practice providers at Jackson Health System in Miami. “You need to have a real conversation with that person, and not simply write down a name on a piece of paper that you keep in a filing cabinet.”

Zitter agreed that having conversations with loved ones is vital.

“A written document is a good first step, but it’s not the ultimate goal,” said Zitter, whose work around end-of-life decisions was profiled in the 2016 Netflix documentary, “Extremis.” “For me, the real work happens on Friday nights at the dinner table, when I talk with my family about illness, and death and what I would want at the end of my own life, even when my sons are rolling their eyes.”

But Zitter conceded that a major barrier stands in the way of these conversations: a fear of talking about death.

“Even for me, as a doctor who deals with death every day, I don’t want to think about my own end, it makes me very sad,” she said.

So what can help us all climb over this final existential barrier to end-of-life planning?

I recently witnessed a conversation at work between a palliative care doctor and a patient with severe heart failure, whose adult son and grandchild were at the bedside. The doctor gently reminded the patient that if she could give her preferences now while she was conscious, she would relieve the burden on her son, who otherwise would have to make hard decisions on her behalf. When she finally said she wanted to go home with hospice, her son was visibly relieved.

Framing end-of-life planning as a service to loved ones is a compelling idea. One critical-care doctor I work with suggested we link advance directives to Valentine’s Day. Show your love by sharing what you want. This idea is also what finally motivated me to overcome my own hesitations.

This month, I finally filled out “Five Wishes,” a downloadable document, where I named a health-care proxy and two backups. I wrote I don’t want to artificially prolong my life with machines, such as a ventilator, and if such treatments are started, I want them stopped. I had two neighbors witness the document, making it legally binding in Virginia, and placed it in our kitchen filing cabinet.

Talking about my wishes over dinner with my kids? I’m not there yet. Meanwhile, let me share my advance directive here, so at least my kids can Google it: When the time comes, keep me comfortable, let me go and know that I love you.

Complete Article ↪HERE↩!

August 12, 2019August 12, 2019

‘Good Death’

Choosing How to Live and How to Die

By Matt McMillen

Patty Webster heard her mom talk about death. A lot. So often that she and her sisters sometimes had to stop their mother from bringing it up. Her message got through, though.

Before her mom died of a stroke in 2016 at age 73, a previous stroke had already robbed her of her ability to communicate. But her family knew what she wanted at the end of her life because she had made it plain to them. That allowed them to share her wishes with her doctors and others so that she could die as she chose.

“We were her voice,” Webster says. “I didn’t know what a gift all of those talks had been until then.”

Webster works for the Conversation Project, an initiative of the Boston-based Institute for Healthcare Improvement. Founded in 2010, it encourages people to become comfortable talking about the type of care they want — and don’t want — at the end of their lives. A survey the group conducted in 2018 found that 95% of Americans are open to discussions about their wishes. But only about 1 in 3 have talked about what they would want. Five years earlier, however, that number had been closer to 1 in 4. More people, it seems, are talking about how they want to die. Some more than others.

“My family is tired of me talking about it,” Webster says, laughing.

But Webster wants those discussions to continue, and she wants the number of people having them to keep growing. She also wants to clarify: “Don’t talk about death but about how you want to live.”

Expressing your wishes for the end of your life and having them respected: Some call it “a good death.” Others may refer to it as “successful dying.” Ira Byock, MD, prefers “dying well.” A palliative care specialist and chief medical officer of the Institute for Human Caring at Providence St. Joseph Health in Gardena, CA, Byock is also the author of Dying Well: Peace and Possibilities at the End of Life.

“Every one of us as adults should be having this conversation,” he says.

In fact, Byock and his colleagues talk to high school seniors about advanced care planning: “We want to normalize this and make it a part of growing up.”

In a paper published in 2016, researchers reviewed 36 previously published studies to determine the “core themes” of a good death. They looked at the question from three perspectives: the person dying, the family, and health care providers. While 11 themes emerged, all three groups ranked three themes as most important:

Deciding how they wanted to die, including who would be with them and having their treatment preferences and funeral plans prepared
Approaching death without pain
Being emotionally well, meaning their psychological and spiritual well-being has been addressed

States Adapt to Change

In some parts of the country, the conversation includes drugs that end your life. Oregon became the first state to enact the Death with Dignity Act, which voters approved in a 1994 refereundum. After years of court challenges, the law took effect in 1998. It allows residents who are terminally ill, have 6 months or less to live, and are deemed mentally able to make their own decisions to end their lives. Ten years would pass before another state, Washington, would approve its own version. Maine became the most recent state to pass a version of the law. Gov. Janet Mills signed it on June 12. These are the other states where doctor-aided dying has been made legal and when the laws took effect:

California (2016)
Colorado (2016)
District of Columbia (2016/2017)
Hawaii (2018/2019)
New Jersey (2019)
Vermont (Patient Choice and Control at the End of Life Act, 2013)
Montana (Although no Death with Dignity law exists in Montana, the state’s Supreme Court ruled in 2009 that the practice was legal.)
The laws have sparked opposition. In Maine, for example, the state legislature passed the law by only four votes. In California, the law was overturned in court last year, but an appeals court put a hold on that ruling, and the state’s Supreme Court chose not to review the case. That leaves the law, known as the End of Life Option Act, in effect, though its future remains uncertain.

Between 2009 and 2017, the most recent year for which statistics are available, 1,364 people in Washington had used the law to end their lives. Last year, in California, 337 people chose to die under the state’s End of Life Option Act. In Oregon, 2,217 terminally ill people have received life-ending drugs over the past 2 decades. Nearly two-thirds used those drugs, while the rest opted not to take them.

“That’s been the case year after year,” says Peter Lyon, MD, medical director of End of Life Choices Oregon, a Portland-based organization that helps Oregonians navigate the Death with Dignity Act and other final decisions. “Some people just like to know that the medicine is there and available if their pain becomes too severe or their condition worsens a great deal.”

On average, says Lyon, people do not reach out to his organization until they have about 3 to 4 weeks left to live. One reason: It’s so difficult for many people to think about, let alone talk about.

“Talking about death is the hardest conversation that families can have,” he says.

More Than a Medical Decision

How you want to die is only partly about medical issues, Byock says. It’s also highly personal. And it will mean something different to you than it will to your spouse, your parents, your children, and others. To reach your own definition, Byock advises you take stock.

“Ask yourself, ‘If I’m seriously ill, what would matter most to me?’” he says. “For the vast majority of us, it’s other people. We are hard-wired to matter to one another.”

Your conversations, of course, should address practical matters, like life insurance information, how to access your safe deposit box, how to close your bank account — and your Facebook account — and more. Byock recalls how much that meant to him after his mother’s death.

“She lived alone, we found that she kept a wooden box next to her phone with all the documents we needed,” he says. “Mom was still taking care of us.”

You will also need to make decisions about key medical concerns. For example, do you want to be kept alive as long as possible, even if treatment causes great discomfort? Or do you prefer care that may allow you to enjoy better quality of life, though your death may come sooner?

“Some people might worry that they’re not going to get enough treatment, while others might be afraid that they’ll get overly aggressive care,” says Kate DeBartolo, who directs the Conversation Project.

Another crucial consideration: Who will speak for you if you are not able to voice your wishes? For many people, that may be a loved one, such as a family member, but it does not have to be.

“I try to encourage my patients to think about who knows them best on their good days and bad days and who is readily available,” says palliative care doctor Christian Sinclair, MD, of the University of Kansas Health System in Kansas City.

DeBartolo agrees: “I would love to expand the idea that it doesn’t have to be a traditional family member. Ask yourself: Who would you trust, and who do you think could really speak for you?”

Such a person, known variously as a health care proxy or surrogate or agent, can be given power of attorney to make treatment decisions for you when you can’t make them for yourself. You also can –and should — put your wishes in writing. Legal documents, such as advance directives and living wills, are an alternative or may be used along with a proxy to make clear what you want.

Sinclair, a co-author of the Institute of Medicine’s 2014 report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, says that over the last 15 years or so, conversations between patients and providers about end-of-life care have become more common as more doctors have been trained for such discussions.

“Research shows that when these conversations happen and patients and clinicians are on the same page, there’s more likelihood that those patients will actually get the care that they want,” says Sinclair. “Having a good death is about making individual choices.”

Complete Article ↪HERE↩!

August 11, 2019August 11, 2019

Death, Be Not Proud:

Literary Lessons on Death and Dying

Rituals like funerals, now less common, used to help us deal with death.

By Jeff Minick

For over three decades, Reverend F. Washington Jarvis served as headmaster of Boston’s Roxbury Latin School, the oldest school in continuous existence in North America. During this time, Jarvis delivered a series of addresses to the student body, the best of which were collected in “With Love and Prayers: A Headmaster Speaks to the Next Generation.” For a number of years, I taught “With Love and Prayers” to high schoolers and found that both parents and students valued the book for its wisdom, wit, and moral lessons.

In his chapter “The Spiritual Dimension,” Jarvis relates this anecdote to the young men in his charge:

The celebrated headmaster of Eton College, Cyril Alington, was once approached by an aggressive mother. He did not suffer fools gladly.
“Are you preparing Henry for a political career?” she asked Alington.
“No,” he said.
“Well, for a professional career?
“No,” he replied.
“For a business career, then?”
“No,” he repeated.
“Well, in a word, Dr. Alington, what are you here at Eton preparing Henry for?”
“In a word, madam? Death.”

As Jarvis then points out, the principal mission of Roxbury Latin is to prepare its students for life. “And,” he goes on, “the starting point of that preparation is the reality that life is short and ends in death.”

These few lines bring much to consider. Do we aim at getting our young people into “good” schools while neglecting to instill in them the classical virtues? Do we recognize that “life is short and ends in death”? If so, what outlook on the world should such a truth inculcate?

Before seeking answers to these questions, we must recognize that our ancestors were more familiar with death than we moderns. They lived among the sick and dying in ways we do not, and were forced to deal with circumstances that today are the domain of our health professionals. Victorian poetry, for example, is a thicket of verse about death and dying.

We are more distant from the dying. Low infant mortality rates have thankfully removed many of us from witnessing those tragedies, and though a majority of Americans want to die at home, only 20 percent do so.

Lacking this intimacy with the death of earlier generations, we may, if we wish greater familiarity, turn to literature, Victorian or otherwise. Stories and poems can give us intimate portraits of the hope and the despair, the joy and the sorrow, the courage and fear of the dying and those who surround them.

Let’s look at four novels in which the characters exit this earth in dramatically different ways. Each of them offers a lesson on death.

‘The Death of Ivan Ilyich’

Portrait of Leo Tolstoy, 1887, by Ilya Repin. Oil on canvas. Tretyakov Gallery, Moscow.

In “The Death of Ivan Ilyich,” Leo Tolstoy’s novella and perhaps the greatest of all fictional meditations on the debt we owe to nature, Ivan Ilyich lies on his deathbed wondering whether he has lived a good life.

As doubts fill him, and as death creeps ever closer, he suddenly realizes that “though his life had not been what it should have been, this could still be rectified.” In his last hours, he is flooded with sorrow and pity for the son and wife he has neglected, and though they cannot understand him when he begs their forgiveness, he dies “knowing that He whose understanding mattered would understand.”

Ivan Ilyich goes to his grave in peace, knowing the truth of Katharine Tynan’s lines from “The Great Mercy”: “Betwixt the saddle and the ground/was mercy sought and mercy found.”

Here Tolstoy reminds us that even on our deathbed, we may yet clear our conscience and set right those things that we have done or failed to do.

‘Kristin Lavransdatter’

Sigrid Undset as a girl. The Noble Prize-winning novelist wrote a trilogy called “Kristen Lavransdatter.”

In Sigrid Undset’s trilogy of medieval Norway, “Kristin Lavransdatter,” we discover the importance of ritual in death. The Christian injunction “To bury the dead” means more than tumbling a corpse into a grave, covering it over with earth, and moving on. During the long death of Kristin’s father, Lavrans, the neighbors visit, the priest performs the last rites, a vigil is held after Lavrans breathes his last, and later there is a feast to celebrate his memory.

From Kristin and her kin, we moderns might learn once again how to “bury the dead.” More and more, I hear of people and know a few of them who when a loved one dies, conduct no ritual of passage, no funeral, no memorial service. An obituary may appear in the paper, or not, but otherwise the survivors put the deceased into the grave or columbarium without ceremony.

With this practice, we fail to realize that we have cheated ourselves of the comfort of a formal farewell and have tarnished our humanity in the bargain.

‘A Tale of Two Cities’

In “A Tale of Two Cities,” Charles Dickens puts Sydney Carton, a barrister, an alcoholic, and a cynic, onto the platform of a guillotine after Carton nobly takes the place of another man sentenced to die by execution. Carton’s thoughts before the fall of the blade bring him solace: “It is a far, far better thing I do than I have ever done; it is a far, far better rest that I go to than I have ever known.”

From Carton, we receive a lesson in courage when faced with death.

‘Little Women’

Of course, as Louisa May Alcott notes in “Little Women,” “Seldom except in books do the dying utter memorable words, see visions, or depart with beatified countenances …”

In describing the passing of young Beth March, whose “end comes as naturally and simply as sleep,” Alcott shows her readers that, like Sydney Carton, those who die possess the power to bequeath gifts to the living. Before she slips into the shadows, Beth reads some lines written by her beloved sister Jo. And she realizes that her illness and impending death have caused Jo, her caretaker, to grow and mature, and to take from her lessons in bravery and her “cheerful, uncomplaining spirit in its prison-house of pain.”

Like in these novels, the loved ones with whom I have sat while they closed their eyes and faded away have given me instruction. Perhaps the best of these teachers was my mother, who died from cancer 30 years ago. In her final lesson—perhaps her greatest lesson—she taught me and my brothers and sisters by way of example how to die with grace and courage.

If I find myself in my mother’s circumstances, with time to bid goodbye to those I love, and if I possess even half of her strength, I will die a fortunate man.

Complete Article ↪HERE↩!

August 10, 2019August 10, 2019

‘I’ve six months to live’ – the words that turned my life upside down

Rachel O’Neill knew her mother had terminal cancer, but there was never a timeline put on it

Rachel O’Neill with her mother Marie: ‘No matter what happens, a mother’s love lasts forever’

by Rachel O’Neill

I’ve six months to live.”

Five words that turned my life upside down.

I always knew that terminal cancer was something I would have to deal with. But because there was never a timeline put on it, it was something I didn’t have to think about. Sure, Mum had incurable cancer, but it wasn’t something that was going to affect me right this second.

And then suddenly it was there, affecting every part of my life.

In the time it took to say those five little words, my entire status changed. I was no longer someone whose mother was sick, I was someone whose mother was dying. Life as I knew it was officially on pause.

Suddenly, the “how’s your Mum doing?” questions become a lot harder to answer. I’m a very open person which means everyone tends to know everything that goes on in my life. I’m also a terrible liar. If someone asks me how Mum is doing, I will answer it very honestly. So honestly, that it can make people uncomfortable. I’ve had people squirm after I’ve told them that Mum is dying. I’ve had people shuffle awkwardly from foot to foot, desperately thinking of something to say that won’t upset me or them.

Now I’ve adopted a very simple tactic to counteract the awkwardness. I minimise what’s going on by joking about it instead.

Minimise, minimise, minimise.

Never let people see how badly you are struggling with it. I must never drop the facade that I’m managing to hold it together when in reality this is the worst thing I’ve ever had to face.

To make people comfortable, I tell them that my mother is dying and follow it with a quick “it’s fine”. I’ve joked about how I might finally be able to get on the property ladder with the inheritance. I quickly change the subject when I can feel people getting nervous, even if I’m bursting to talk about what’s happening. I’ve done everything I can to make people feel more comfortable around me because if I can joke about it, it means they can relax a little.

Nobody is truly comfortable with death.

Despite the fact that we “do death well” in Ireland, it’s still a subject that many of us won’t talk about. Confronting the fact that someday, we will cease to be here is something we’ll spend a lifetime trying to come to terms with. Many of us never do.

Knowing that myself and Mum have so little time left together is hard. I am terrified of regret, of saying the wrong thing, of not asking the right questions, of not making enough of our time together. It now feels like every conversation feels like it has to be meaningful in some way. I feel like if a moment with her isn’t memorable, I’ve wasted it. It’s a suffocating pressure to be under.

What has stood out to me is the endless kindness I’ve experienced from every corner of my life

The pressure manifests itself in many ways. For example, I’ve been in a perpetual state of anticipatory grief for the last few months. I’m grieving the life we won’t have together. I’m grieving that she won’t see me get married or meet her grandchildren. I’m grieving the advice she won’t be able to give me, the questions I won’t be able to ask her and the adventures she will never get to have.

That is a very painful process which your body does everything to protect yourself from. I’m constantly tense because I’m bracing myself for an impact that I know is coming, despite not being sure when it’ll hit. I feel like if I can process this pain now, it won’t be as painful when the inevitable comes. It’s the only way I know how to prepare for what’s coming.

Some people struggle to understand my approach. Some have even said to me that I need to move past the grief. They’ve said that my mum needs me to be upbeat and strong for her. To me, that feels fake. Anxiety and depression are in my DNA so worrying about the future and being down about it are things I’m very used to doing. It’s a coping mechanism that some people just don’t understand. They feel that I’m doing Mum a disservice, that I should pretend to be okay when in reality I am struggling badly with everything that’s happening. What I say to those people is that there’s no “right” way to grieve. It’s a uniquely personal process, best left to those undergoing it.

What has stood out to me over the past few months is the endless kindness I’ve experienced from every corner of my life. People offering food, time, shoulders to cry on and a kind ear to listen. People encouraging me to open up when I can and who treat me like a normal human being when I can’t. The empathy and kindness have been utterly overwhelming but serves as a reminder that people really do care. It gives me hope that when I come out the other side of this, I’ll have people who will help me build myself back up again.

Having discussed with Mum what happens when this is all over, she told me something that I’ll hold dear to my heart forever.

“Just let yourself be loved. It’s no more than you deserve and always carry with you that you are my beloved child. Always and forever.”

No matter what happens, a mother’s love lasts forever.

Of that, I am absolutely certain.

Complete Article ↪HERE↩!

August 9, 2019August 9, 2019

Working Too Hard For A Good Death

Has Competitive Dying Become A Thing?

By Howard Gleckman

We Americans love to compete. We bet in March Madness office pools on who will win the annual college basketball championship. We pay a pretty penny for the best manicured lawn in the neighborhood or the biggest flat screen in the condo. Some of us will pay bribes to get our kids into the best colleges.

And, now it seems, there is a growing need to compete over who will have the best death. You know, the one where we are at home, pain-free but alert, surrounded by our loving families, singing our favorite songs, fully at ease with our last moments of mortal life.

For many of us, the reality will be quite different. Despite everyone’s best efforts, we may die in a hospital. The kids may not make it in time from their homes in LA or Chicago. The medications that relieve our pain may also slow our thinking. And we may not have resolved all those family issues that lingered inexplicably for decades.

More guilt

What’s troubling about this drive for a good death (or, perhaps in our competitive world, the best death) is that many of us never will achieve it—often for reasons out of our control. And that may leave our surviving loved ones with an even bigger sense of guilt than they already have. And paradoxically, those who cared the most may end up feeling the most guilty and depressed.

Failing at some ideal of death may even make dying more difficult. Dr. Andreas Laupacis, a palliative care physician and professor of medicine at the University of Toronto, shared this concern in a wise 2018 essay about the idea of good death: “I worry that the term makes people who die with pain or psychological distress think that it is partially their fault…. They haven’t tried hard enough or aren’t tough enough.”

He even suggests it may add to the psychological burden of their doctors: “I worry that health care practitioners who have provided their best possible care will feel inadequate.”

A good life

Just as troubling: An excessive focus on the last hours of life shifts attention from the months or even years before that. Many older adults will die after living a long time with chronic conditions. It would be nice, as we focus on a good death, if we also think about a good life, especially during the time when it may include some level of disability.

The idea of competitive dying may be counterproductive in part because there is no true good death. Or rather, there are millions of them. For decades, clinicians have tried, and largely failed, to establish some agreed-upon norms. And researchers have no real idea how many people do in fact die a good death, by whatever measure.

Physicians and surviving family members, it turns out, often have different ideas of a good death than those who are doing the dying. For example, family members are much more likely than patients to say that maintaining dignity is important at the end of life.

But this uncertainty isn’t slowing us down. Google “good death” and you’ll get 1.97 million hits. Search Amazon, and you’ll find dozens of books. Bloggers blog on their own impending deaths or that of their relatives. A 2016 literature review turned about three dozen peer reviewed articles on what constitutes “successful dying.”

Better to watch a sunset

One Amazon reviewer wrote that she had read 60 books on a good death to prepare for her own passing. I don’t know if she was living with a terminal disease or just thinking way ahead. But I can’t help but wonder if her time would have been better spent watching a sunset, going to a concert, or having dinner with friends instead of being so focused on how to do death right.

This trend is by no means all bad. We are thinking—and talking—about a topic that for too long has been taboo in the US. But like those parents who were bribing college officials to get their children into the best schools, we may be going overboard. And we may be setting unrealistic, and counterproductive, expectations for ourselves and our families.

We absolutely should be proactive when it comes to preparing advanced directives, choosing health care proxies, and talking to one another about death. Especially talking. But we also need to recognize that, sometimes, circumstances mean that many of us will die alone, or in some pain, or with unresolved family issues. All we can do is our best. And nobody should be keeping score.

Complete Article ↪HERE↩!

August 7, 2019August 7, 2019

Obituaries are the only redemptive news anymore

By Philip Kennicott

Toni Morrison is dead. So are D.A. Pennebaker and Aretha Franklin, and Philip Roth, Stephen Hawking, Ursula K. Le Guin, Milos Forman and too many others to name, even when limited to artists and writers who have perished in the past few years alone. By some accounts, two people die every second, thousands every hour, tens of millions every year. But at this moment in American life, the death of our best people has become a collective lifeline and refuge for our anxieties. It sometimes seems that the obituary is the only news that makes us feel whole.

Morrison was our essential conscience, a writer of narrative brilliance and moral clarity. The magnitude of her loss, at this moment in our descent into barbarism, is incalculable. But to spend time today with her work, with memories of her life and the testimony of those who knew her, is infinitely more rewarding than reading about all the other terrible things that have happened in the past few days. The deaths of artists and other creators make us reflective, and we live at a moment when looking back is much easier than looking forward.

We also crave the reassurance that we are not, as a species, entirely spent. Morrison died only days after two mass shootings, which are not only a regular fixture of American life, but also a recurring reminder of our political paralysis and the corruption of our democracy. We are in the midst of a trade war, markets have plunged, Greenland is hemorrhaging ice and our president tweets racism to inflame a hungry audience of white nationalists who dream of a world without people like Morrison in it.

Death and remembrance, at least, come with the customs and norms that have been shredded in most of the rest of public life. If nothing else, death still inspires a pause in ordinary life and, in the case of artists, a respectful consideration of their habitually ignored accomplishments. The reflective look back on a life and a body of work such as Morrison’s is ultimately celebratory, a chance to think the best of another person and, by extension, ourselves. Artists, performers, scientists, writers and other creators rarely “make news” in the same way politicians do, even though their influence on our culture is greater, deeper and more meaningful. The obituary is a belated observation and acknowledgment that people like Morrison, in fact, made news every day through their work. They formed the deeper part of the minds that our pollsters seek to measure and quantify in the frenzied haste of the news cycle. They are the atmosphere of American culture, while all else is merely weather.

Obituaries are a paradox of sorts, a distraction toward meaningfulness, a diversion to what really matters. The response to the rest of the news is often an impulse to escapism, a turning away. But while Morrison shares space with the usual firehouse of bad news, her passing offers at least one impulse to go deeper, to read more, dig in, think more critically and disconnect from the ephemera. Obituaries like the ones that have been written about her in the past day are even better than the usual “good” news, which is often little more than a reminder that somewhere, somehow, someone has done an unnecessary kindness; obituaries are redemptive on a grander scale.

We seem capable of only two modes of existence: panic and sadness, the former fast-paced and full of collateral damage to the world around us, the latter at least sometimes constructive and reflective. America has experienced periods of intense reflection around death in the past, as when the last remaining veterans of the Revolutionary War were dying in the middle of the 19th century, leaving people to wonder whether there were any steady voices and clear heads to steer us away from, or through, the accumulation of civil strife and political violence. The deaths of those who fought in World War II offered an occasion to think about the fraying of the old 20th-century social contract, the dissolution of the bond between the generations enshrined in key social-welfare programs, and the extinction of American optimism — that we might live in a society without poverty, without unnecessary suffering, with genuine opportunity and social mobility.

But the death of an artist is different from the loss of political leaders, no matter how wise or benevolent, or the larger passing of a generation, which has continued since the beginning of time. Morrison’s work remains with us, intractable, urgent and uncompromising, and it is no less effective today than it was on Monday. It is curious to listen to people on television debating the effectiveness of this policy or that plan, often arguing themselves into the absurdity that because nothing has yet worked, therefore nothing new should be attempted.

Meanwhile, the work of artists outlives them, operating on minds too young to be cynical. Politicians die and, if they’re lucky, are memorialized for having fixed something in the broken world they inherited. Artists die, and we flock to what they left behind, reanimating it, refreshing its meaning and reincorporating it into the body politic.

If you want to change the world, authentically and for the better, would you live your life like a politician, or a businessman, or a pharmaceutical executive or Donald Trump? Or would you live it like Toni Morrison?