The Life Matters Media Newswire aims to serve as a comprehensive portal of all news related to end of life decision making and care. We aggregate stories from other media outlets in one place- here, where you can access them easily. We also strive to produce original content covering stories we feel are receiving scant attention.
Family photos, voice recordings, phone numbers and even legal documents could be lost if your loved ones are unable to access your social media accounts after death.
As technology reshapes interpersonal communication and document storage, Americans must learn to prepare for the unexpected.
Technology reporter Tim Akimoff and attorney Ronette McCarthy fielded questions regarding living wills, email and social media during “Your Digital Afterlife,” an event hosted by Life Matters Media and Chicago NPR affiliate WBEZ.
Life Matters Media’s Guide to Digital Death
• Wills are the only truly effective way to manage all your digital assets
Wills are expensive, especially for young people starting out. Although there are some digital tools that can help, none are as complete as a will completed by an experienced attorney.
If you do much of the work yourself, you can have a will drafted between $300 and $1,200, depending on where you live.
One popular service is RocketLawyer.com, but it is time consuming, limited and comes with a cost.
• Each social media company has a different set of rules governing privacy and death
The only way to ensure loved ones have access to your online accounts is to provide them passwords and instructions in a will or easily accessible document. Start by gathering your digital assets into one place (password manager, spreadsheet).
• Facebook allows users to create memorialized accounts and appoint a “legacy contact”
Facebook allows U.S. users to create memorialized accounts – the word “remembering” is added to the decedent’s profile. On memorialized accounts, friends can share memories, photos and posts, depending on privacy settings. Memorialized profiles do not show up in public spaces, like friend suggestions.
You can choose a “legacy contact” to administer your Facebook profile when you die.
From the top right of Facebook click the down arrow next to the globe and select settings
From the left menu, click security
Click Legacy Contact
You can also opt to have your account permanently deleted.
• Google offers a “death manager”
Google’s Inactive Account Manager, or “death manager,” allows you to indicate what should happen to digital contacts, emails and web history once they are no longer actively managed.
As many as 10 approved family members or friends may have access to data from an account, or the account can be terminated and its data erased after a pre-selected time period.
In the Google Account Settings, scroll down the page and click “Inactive Account Manager”
Then click Setup
Indicate preferences, time period and alerts
Click the Enable button
• Twitter is a tough bird to tame
Twitter’s death policy needs improvement. You can have a deceased user’s account removed only after submitting an official request to Twitter. Twitter will send an email with further instructions and requests for information about the deceased, a copy of your ID and a copy of the deceased’s death certificate.
• Password management systems can be a useful way keep your digital assets protected while at the same time providing peace of mind
- If you use Yahoo! Mail, switch!
Unfortunately, anyone who agreed to Yahoo! terms and conditions will lose data after death, because nothing is transferable. Your email is quickly shut down after a period of inactivity or death.
- Young attorneys are often well-trained in wills and trusts
There is a misconception that wills are incredibly expensive. Young counselors are often trained by experienced mentors who can draft a will for hundreds- not thousands- of dollars. It’s a much better option than using Legal Zoom or a one-size-fits-all printable will.
- Always keep a paper copy of important legal documents and passwords somewhere safe
Tech companies offering digital file cabinets may not be around in 10 or 20 years. Update your paperwork yearly.
What would happen to your family photos stored on Facebook or your important legal documents stored in the digital cloud if you died or became incapacitated?
Life Matters Media is on a mission to help Chicagoans plan for their “digital afterlife” and safeguard social media accounts, email systems and important legal and financial documents.
As technology reshapes interpersonal communication and document storage, Americans must learn to prepare for the unexpected and work to ensure their loved ones have access to their numerous accounts.
“There are easy steps that we can take online to ensure that those after we might not be here can have access to the affairs that they need to have access to online,” said Co-Founder and President Randi Belisomo on WGN 720. “So much of our lives is online and so much of our property is managed by third-party accounts,” she added. “It’s not just our horse and our farm and our old homestead anymore. Our property is out there in the digital world.”
LMM, in collaboration with Chicago NPR affiliate WBEZ, will host “Your Digital Afterlife” Tuesday May 19 at Revolution Brewing during Chicago Craft Beer Week. Chicago Sun-Times lifestyle reporter Sue Ontiveros recommends the event, because digital death is “something most of us probably haven’t thought about much. But we should.”
WBEZ Digital Content Director Tim Akimoff will answer questions regarding Google, Yahoo!, Twitter, Facebook and other popular services. Ronette L. McCarthy, legal counsel to Elements, the cremation company, will address federal laws protecting personal data and the important step of appointing a digital proxy to obtain and manage online property.
“Because the World Wide Web is only 25 years old, we don’t have much of a plan for how to pass along our digital property,” Akimoff reported last fall. “While most people still have physical properties like homes or cars or businesses, many people have developed digital assets that are increasingly valuable. Online banking, insurance, forms filled out for the department of motor vehicles, medical records, credit cards and almost every aspect of our lives is digitized today.”
The world has changed more in the past decade than in the previous 500, he added. There are more than 30 million Facebook accounts belonging to dead people, and a recent study estimates digital assets average about $34,000 per person.
To help users plan, Facebook and Google have launched programs allowing users to appoint “legacy contacts” that can take control over their account in case of death, LMM reporter Daniel Gaitan told Rivet Radio producer Marc Filippino.
“If we put a fraction of the amount of planning in the end of life as we do in the beginning, I think we’d all be better for it,” Belisomo told WGN-TV feature reporter Marcus Leshock. “Dying is not as easy as it used to be. It is really complicated… Just start a conversation. The first step to actually taking action is getting comfortable with the idea.”
You can register here: http://bit.ly/1KKyAmg
Physicians caring for dying patients often miss the beauty and grandeur of death, said bestselling author and physician Abraham Verghese at the annual conference of the Association of Health Care Journalists in Santa Clara, Calif.
Verghese, a Stanford University professor, highlighted the importance of bedside medicine and physical examination in an era of advanced technology. Terminally ill patients in hospital beds, he said, often receive less attention than the data stored within their files. Patients, he explained, have become “iPatients.”
He opened his keynote speech with the story of 19th century writer and physician Anton Chekhov, who died at age 44 from tuberculosis Near the end of his life, he wished to travel with his wife to the Black Forest of Germany, to the Badenweiler spa.
When he first got there, Chekhov perked up: he stopped coughing, his color got better, he had loads of energy, and it seemed like a brilliant thing to have done, to have come to this place. Then all of a sudden, on the night of July 2, 1904, he broke loose with a massive hemoptysis, a massive coughing of blood.
So they sent for the spa physician, a man by the name of Dr. Schwöhrer. At that point in time, Chekhov was undoubtedly thought to be the most famous physician in the world, and here’s poor Dr. Schwöhrer, who is from this nice little gig at the Badenweiler spa, and he is called in the middle of the night because the most famous physician in the world is dying.
Chekhov, in a final reflex of courtesy, sat up to say, “I’m dying.”
Dr. Schwöhrer was about to send for an oxygen pillow, when Chekhov, lucid to the end said, “What’s the use doctor? Before it comes, I will be a corpse.”
So, Dr. Schwöhrer ordered a bottle of Champagne. When it came, Chekhov took a glass, and turning to his wife, Olga, he said, “It’s been so long since I’ve had Champagne.” He drained the glass, lay down, turned over to the bedside and stopped breathing. He turned from life to death.
Verghese said he has long been fascinated by this story, because of its poignancy and Schwöhrer’s decision to order Champagne.
“I’ve presided over many, many, many deaths in the AIDS era, being at the bedside, but never have I ordered a bottle of Champagne,” he said. Schwöhrer’s actions provided Chekhov and his wife a simple and beautiful death.
Verghese’s first book, My Own Country, was published in 1994 and traces the deaths that he witnessed during the AIDS epidemic.
“My epiphany came one morning when I was in clinic, and as you can imagine, you get to know these young men very well,” Verghese said. “I was young then, they were my age, and there was something very poignant– that I was caring for young men my age who were dying.”
When one patient was too sick to visit the hospital, Verghese traveled to his home in rural, east Tennessee to visit. Verghese wanted to see him once more, and the patient’s family was emotionally impacted by his trip.
“It seemed to help them come to terms with this illness and seemed to signal to them that I would not abandon him, that I would be there until the end,” he said. “This was a revelation to me. This is what the horse and buggy doctor 100 years ago did so well. They were able to heal, even when they could not cure.”
Veteran journalist and broadcaster Scott Simon is riding a wave a public support and critical acclaim for his new memoir, Unforgettable, the story of his mother’s thunderous life and death.
In July 2013, nearly 1.2 million Twitter users followed his series of tweets sent from a Chicago hospital room in which he provided poignant updates of his mother’s final moments.
Simon, host of NPR’s Weekend Edition, read an excerpt from his book at the Union League Club of Chicago on Thursday. He then spoke with Life Matters Media about his decision to share his mother’s final days with the world and the importance of end of life decision-making.
What inspired you to tweet about your mother’s death?
I don’t remember saying “I’m going to just keep tweeting” so much as it didn’t occur to me to stop. My mother was just so interesting, and it’s not as if she would say something, and I would go “oh, wait, hold on, I’ve got to tweet that.” We would spend hours together, and if she closed her eyes for 20 minutes, I would tweet things she said. It never occurred to me to stop. She was giving a great show, she was putting on the last great performance for our family. I wasn’t aware as to what kind of attention it was attracting until really the last day.
Do you think live-tweeting your mother’s death inspired more Americans, especially young people, to have end of life conversations with their loved ones?
I hear that it’s done that, so it’s not a guess. I’ve heard from a lot of people who say, “Yes, that’s something we had to discuss, and what I read gave me the wherewithal for us to go ahead and talk about these sort of things.”
Do you believe end of life conversations are taboo in America?
I can speak for myself: they’re creepy. Even though it’s utterly obvious and universal, they make you contemplate the fact that you don’t live forever.
I absolutely believe that on the one hand, in some ways, we have to live as if we will live forever. You know, we can’t keep ourselves wrapped in some kind of shroud.
But on the other hand, I think there’s also a lot to be said that because we won’t live forever, we have to make maximum use of each and every moment that we have. This doesn’t have to be morbid, but we just have to recognize the obvious: that at some point we’re going to give out, that the people we love are going to give out, and that ought to inspire us to get maximum use of every second that we have.
Yes, following my mother’s death, my wife and I got that legal work taken care of. Legal work in my case is that whatever my wife says is fine with me. That was important to me. If she decides this is still worth going on, that’s fine. If she decides it’s not, she loves me and I have no reservations about that. And vice-versa.
As a broadcaster, how do feel about the “war-like” language so often used to describe death and disease? For example, it is so common for journalists to write, “He or she lost the battle with cancer.”
I think it’s unfortunate. I understand coming from journalism why we look for a metaphor, and that’s it.
When we tell people to “fight,” I think that’s fair, in that we are telling them to care. But I think it’s also unfortunate, because it suggests that somehow, if you just fight hard enough, you are going to survive, and we know that that’s not true.
I do think it’s possible that people who lose interest in life might die earlier, but on the other hand, I don’t think it follows that if you are afflicted with some kind of terminal disease, merely wanting to live and letting doctors try whatever they want is going to mean that you will live longer. So I think it’s an unfortunate metaphor, and we have to come up with something else.
I’ve said it even though I don’t believe it, just because it has insinuated itself into the language. I’ve been trying to say recently something like “after a long seize of cancer.”
You became emotional during your lecture when you mentioned your mother’s picture on the cover of your book, which is now a New York Times bestseller. How does it feel knowing that her picture is being seen by people across the globe?
It means the mother to whom I personally owe just about everything, and who sacrificed everything for me, is in the position to help other people learn from her experiences.
I’ve already heard from people who’ve told me “your mother has become very important to my life.” I can’t tell you what that means to me. I wish I had words for it, that someone who meant everything to me has become important in many other lives too. It’s a very precious thing, and it makes me glad to share the experience, it makes be glad to share the book.
It makes me very happy that in theory, ten years from now someone can pick up this book and read about my mother and find solace or inspiration.
Read an excerpt of the book here
Six Chicago-area faith leaders addressed the importance of end of life decision-making and discussed how their respective beliefs, rituals and traditions impact the process during an event this week at Northwestern University.
Orthodox, Hindu, Islamic, Jewish, Protestant and Roman Catholic perspectives were represented during the panel, hosted by Life Matters Media in collaboration with the Council of Religious Leaders of Metropolitan Chicago. More than 100 attended.
“I can’t think of a time in life in which our own faith beliefs might be more critical than near life’s end,” said LMM President Randi Belisomo, who served as moderator. “Among those for whom faith matters, it is impossible to discuss true end of life preferences without considering the tenants of one’s own religion.”
Perry T. Hamalis, the Cecelia Schneller Mueller Professor of Religion at North Central College, spoke about Orthodox Church teachings on death, something he said is not natural nor intended by God. The Church’s ethical framework exemplifies moral realism, meaning that it centers on God as both creator and redeemer of humanity.
“Humanity has been created in the image and likeness of God, as persons with intrinsic dignity, and given freedom and called to a life of communion with God, neighbor and all of creation,” Hamalis said. “But the world is broken, as a result of primeval rebellion, or sin, which led to alienation from God, a spiritual death, and ushered in physical death, or mortality. So sin and death are not natural, because they were not intended by God to be part of the original, natural, normative human condition.”
Hamalis said the problem of decline and then death, both physical and spiritual, can be cured only by God. Orthodox Christians believe in the saving mercy and grace from the Holy Trinity.
For adherents, life is viewed as a sacred gift from God, and humans are only stewards of their body.
“We are pro-science, pro-medicine, we venerate many saints who were physicians and involved in health care,” Hamalis added. “We have tremendous respect for human freedom… We also acknowledge the uniqueness of every human person, so counsel and care must be personal.”
The end of life is a time for repentance, confession and communion in preparation for spiritual resurrection, he said. “We are against suicide in all forms, we regard euthanasia as suicide, and we affirm the distinction between killing and letting die,” Hamalis said. “We allow for the withdrawal of life-supporting technology in most circumstances. We support palliative care.” Organ donation may be viewed as a form of philanthropy.
It should be the goal of both family and designated caregivers, according to the Orthodox Church in America, to ensure that the final days of a terminally ill person are spent reasonably free of anxiety, tranquil and aware. Integral to maintaining this type of condition is the administration of proper pain medications.
John J. Hardt, a bioethicist and Vice President for Mission Integration at Loyola University Health System, offered a Roman Catholic perspective on end of life care.
“Our bodies are not our own, but we are to be stewards of that gift. Life is a precious gift, life is sacred. But at the same time, we are all destined to die,” Hardt said. “Life in the Roman Catholic tradition does not have infinite value, it has finite value… The only thing that has infinite value is God.”
When Catholics approach end of life decision-making, they must navigate the gray area of contention between those two poles.
“How do we at once value the sanctity of life and also acknowledge that life is something that will leave us as we know it here,” he added. “We are called to a different life, which makes this life of relative value, but sacred value.”
Concerning contemporary medicine and technology, Catholics should not “throw everything” at a patient to prolong life or seek to hasten death. Hardt said he believes Catholics facing the end of life can find comfort in Jesus Christ’s death and resurrection, as described in the Gospels.
The Church also teaches that effective pain management is a critical component of appropriate end of life care, and Pope Francis recently addressed the importance of palliative medicine– care designed to treat side-effects of both disease and aggressive treatments.
“I therefore welcome your scientific and culture efforts to ensure that palliative care can reach all those who need it,” Pope Francis told an assembly. “I encourage professionals and students to specialize in this type of assistance, which has no less value on account of the fact that it ‘does not save lives.’ Palliative care recognizes something equally important: recognizing the value of the person.”
The Church does not accept that human beings have a right to die and strongly opposes physician-assisted suicide, sometimes known as “Death with Dignity.”
The Rev. Myron McCoy, senior pastor of First United Methodist Church: The Chicago Temple, offered his experiences as both a Protestant minister and an African-American.
“When confronted with end of life considerations, it is ever so important to remember that this is a significant time in persons’ lives and in the lives of practitioners, as they do the hard and sacred work of preparing for death,” McCoy said. “Having just celebrated the life of a member earlier this week… with their decision not to prolong life, I’m readily attuned to the fact that we must do more in pondering questions surrounding end of life care.”
There are no final or clear-cut answers in Protestantism, he said, because every situation, family and patient is different. Protestantism comprises many different Christian denominations with a wide range of beliefs, tracing common origins to the Reformation. However, all mainline Protestant denominations oppose euthanasia, as Christians view life as a gift from God that should not be taken away.
“In my tradition, Protestant and United Methodist, we believe care for the dying is an aspect of our stewardship of the divine gift of life,” he said. “Human interventions and medical technologies are only justified by the help that they can give. Their use requires responsible judgement about life-sustaining treatments that truly support the goals of life and when they have reached their limits.” There is no moral or religious obligation to use them when they only extend the process of dying, and families should have the freedom to stop them.
McCoy highlighted the attitudes of some African-Americans towards end of life care, as African-Americans are far more likely to request aggressive and artificial life-sustaining treatments than other populations. He called for more discussion and education regarding these health care decisions, as patients should not default to aggressive, often futile treatments in the absence of previous discussion. There is a historic distrust between African-Americans and the medical community, due in part to their history of receiving inappropriate, and sometimes harmful, treatments.
Rabbi S. Joseph Ozarowski, rabbinic chaplain with the Jewish Healing Network of Chicago, said that although Judaism has evolved over thousands of years, its teachings remain squarely based on the Torah, also known as the five books of Moses, and oral traditions which have endured over time.
One cannot understand the Torah without oral traditions, he said. Today, the largest movements are Orthodox Judaism, Conservative Judaism and Reform Judaism, a more liberal strand in which some adherents accept physician-assisted suicide and voluntarily stopping eating and drinking (VSED).
“In Judaism, life is a gift from G-d, and we are custodians,” Ozarowski added. “Life has infinite value, but life is finite. Life really is cherished.”
Life should be sustained at all costs, according to traditional Jewish law, and almost any commandment in the Torah can be broken if it involves the saving of a life. Therefore, Jewish law forbids euthanasia and regards it as murder, because every moment of human life is considered equal in value.
However, there is also no commandment to extend death or prolong suffering, which is why proper pain medications or remedies aiming to alleviate suffering “are kosher.” Ozarowski said he often advocates palliative care for patients nearing death.
Dr. Aasim I. Padela, director of the Initiative on Islam and Medicine and an emergency physician at the University of Chicago Medical Center, offered a Sunni Muslim perspective on end of life care. Most Muslims are of two denominations: Sunni (75–90 percent) or Shia (10–20 percent), according to PEW Research Center.
Padela said Muslims seek guidance and moral reasoning from revelation revealed in the Qur’an, believed to the be literal word of Allah, and the Sunnah, recorded sayings of the Prophet Muhammed.
“Moral reasoning, because the Qur’an is considered our revelation, is the only axis we have to any understanding of what God’s will and desire is, particularly about the afterlife,” Padela said. “There is this idea in ethics called theistic subjectivism: that things are right and good because God says they’re right and good… and for Muslims, we must look towards the scriptural source texts to determine what is good and right. What can we tie from the scriptural source texts to sin?”
For example, most Muslims oppose euthanasia and maintain that all human life is sacred, because it is given by Allah. Only Allah chooses how long each person will live (Qurʼan 4:29).
Devout Muslims contend that do-not-resuscitate (DNR) orders represent a soft form of euthanasia– Muslims cannot kill or be complicit in the killing of another, except in the interests of justice. However, it is permissible for doctors to stop trying to prolong life in certain cases in which there is no hope of cure.
Death can have “goodness,” in it, Padela said, because it is essentially a transition of one form of life to another. Unlike other faith traditions, Muslims seek to trust in God’s will, whatever it may be. Suffering and disease should be accepted as part of God’s plan, because humans should not seek a sense of control over their body. “Affairs should be left to God, and be happy with any decree.”
Swami Sharanananda, resident acharya with Chinmaya Mission Chicago, began by offering a meditation and prayer.
He described death as a “rebirth,” because although it is inevitable, it is simply a change from one state of being to another.
“In the Hindu scriptures, life is different from living. The end of life is the end of living,” he said. “There is no death in life, life is continuous. Death is an event in life, not the end. Life is spirit.” Therefore, Americans should not fear death or focus their whole life on avoiding disease or “eating organic foods” just to live longer.
Family and community interconnectedness and karma are other major tenets of Hinduism. Karma creates a system of actions and reactions throughout the soul’s journey through reincarnated lives.
Reincarnation gives great comfort to the dying and to their families, because they trust they will be reborn and into new life. Enduring suffering may lead to spiritual growth and a more fortunate rebirth, but palliative and hospice care are compatible with Hindu values, according to a 2010 article published in the Journal of Hospice and Palliative Nursing. Typically, death should neither be sought nor prolonged.
“Everybody dies, but nobody dies,” he offered. “Death is as holy as birth… to have a good life, one must know what death is. Death is the key to life.”
- Advance Care Planning
- Hospice and Palliative Care
- Life Choices
- Politics and Law
- Society and Culture
- Treatments and Illness
- Health Care
- Reuters Health: LMM Reports
- Voices in Bioethics: LMM Commentary
- Preparing For Your Digital Afterlife
- Illinois Measure Would Allow Cameras To Be Installed In Nursing Home Rooms
- Planning For Your Digital Death: A Vital Part Of Modern Life
- Palliative Medicine Helps Patients Live And Die Better, Advocates Say
- Expecting Dandelions, Discovering Daisies
- May 2014
- January 2014
- December 2013
- November 2013
- October 2013
- September 2013
- June 2013
- May 2013
- April 2013
- March 2013
- February 2013
- January 2013
- December 2012
- November 2012
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Daniel Gaitan serves as a content producer...More