It’s not unusual for a person to pass away and leave behind some unpaid debt.
For the heirs — typically the surviving spouse or children — the question often is what, exactly, happens to those obligations. The answer: It depends on both the type of debt and the laws of the state.
A person’s assets — no matter how meager or massive — become their “estate” at death. That includes their financial accounts, possessions and real estate. And, generally speaking, it’s the estate that creditors go after when they try to collect money that they’re owed.
“Fortunately for surviving spouses or other beneficiaries, in most cases that debt isn’t something they’d be responsible for,” said certified financial planner Shon Anderson, president of Anderson Financial Strategies in Dayton, Ohio.
However, there are some exceptions.
First, though, some basics.
The process of paying off all your debt after your death and then distributing any remaining assets from your estate to heirs is called probate. Each state has its own laws governing how long creditors have to make a claim against the estate during that time. In some places it’s a few months. In other states, the process can last a couple of years.
Each state also has its own set of rules for prioritizing debt that should be paid from the estate, said Steven Mignogna, a fellow with the American College of Trust and Estate Counsel.
“In most states, funeral expenses take priority, then the cost of administering the estate, then taxes and then most states include hospital and medical bills,” Mignogna said.
However, he added, not all of a person’s assets necessarily are counted as part of an estate for probate purposes.
For instance, with life insurance policies and qualified retirement accounts (e.g., a 401(k) or individual retirement account), those assets go directly to the person named as the beneficiary and are not subject to probate. Additionally, assets placed in certain types of trusts also pass on outside of probate, as does jointly owned property (e.g., a house) as long as it is titled properly.
In fact, a person could pass away with an insolvent estate — that is, one lacking the means to pay off its liabilities — and yet have passed on assets that didn’t go through probate and generally can’t be touched by creditors.
However, a handful of states have “community property” laws, which make debt at death a bit more complex.
Generally, those states view both assets and certain debt that accumulated during the marriage as equally owned by each spouse — meaning a surviving spouse could be responsible for paying back the debt, even if it was only in the decedent’s name.
“Debt that couldn’t have been avoided during the marriage — like medical expenses or a mortgage — generally becomes the responsibility of the surviving spouse in community property states,” said CFP Bill Simonet, principal advisor at Simonet Financial Group in Kyle, Texas.
Yet that doesn’t mean you’d have to pay all of it, he said.
“A well-structured letter with a copy of the death certificate can lead to debt being discharged,” Simonet said. “In the probate process, you let the company know the estate has little to no assets to cover the debt and you ask that it be forgiven.”
Also, any time you jointly own debt — i.e., you cosigned a loan — you’re expected to continue paying if the other person passes away.
“You can ask for debt you cosigned to be forgiven, but don’t expect the request to work,” Simonet said.
It’s worth noting that federal student loans, unlike most forms of debt, are forgiven if the student dies. Parent PLUS loans — often held by parents to help pay for education expenses not covered by other forms of financial aid — are discharged if either the student or the parent who took out the loan passes away.
Complete Article ↪HERE↩!
Covid-19 deaths are being announced everywhere. Is “I’m so sorry” ever enough?
By Jocelyn M. DeGroot
Over 100,000 Americans have died from the coronavirus, and thanks to social media, many of us who aren’t personally in mourning are digitally connected to someone who is. Especially for people in the hardest-hit areas, death announcements in Facebook statuses, Instagram posts and tweets seem more frequent than they’ve ever been.
While social-distancing requirements have limited funerals and burials, sharing condolences online is as easy as ever — or at least it should be. But I worry that people will keep scrolling and fail to reach out — or worse, make hurtful comments — because they are simply overwhelmed by the scale of loss.
Because I’ve studied grief for nearly 15 years, I’m often asked what to say to a person whose loved one has died, and my response is always the same: Recognize the loss. And let the person have their grief.
The pandemic has made that advice even more salient.
But what if the grieving person is someone who has appeared in your feed for years but you haven’t talked with since high school? What if he or she is just a casual acquaintance or a former co-worker? What if you exchange likes on each other’s posts but haven’t met in person?
I repeat: Recognize the loss. And let the person have his or her grief.
When you see the bad news, don’t delay, deliberate or draft and redraft responses you’ll never send. “I’m sorry for your loss” or “I’m thinking of you” are perfectly good messages. I always advise sharing a favorite memory of the deceased, but if you don’t have one, it is fine to say, “I didn’t know your loved one personally, but I wanted to let you know I’m thinking about your family.”
If you’re thinking friends and family members who are closer to the mourning person will handle the comforting words, don’t be so sure.
The writer Nicole Chung, who recently lost her mother, said in a tweet, “One thing I’d almost forgotten from grieving my dad: you can suffer an enormous loss and hear almost nothing from people you thought you were close to, while near-strangers come out of the woodwork and send you the most life-giving messages.”
You could be one of those near-strangers.
With the absence of physical contact and proximity being limited to six-foot distances, grieving people will miss out on the important psychological aspects of touch and physical presence, exacerbating the grieving process. Many will be at home alone. So your words matter more than ever.
Preliminary findings from a study I conducted with Dr. Heather Carmack have revealed that the statements most appreciated by people after the death of a loved one are those that acknowledge the person’s grief or offer tangible help: I’m sorry for your loss; My condolences on the death of …; Deepest sympathies; Praying for you and your family (if they are religious).
Our participants also welcomed hearing memories of their loved ones. You can share these even if your recollections come from stories shared on Twitter or photos you’ve seen in your social feeds over the years.
When you navigate to the comments or replies to leave a message, you might see that others had the same idea and posted something similar to what you planned to say. That’s OK. Your words don’t need to be unique. I’ve learned that people often scroll through social media comments not to glean unique insights but simply to remind themselves that people support them — so the specific message is less important than the fact that the message is there.
But please remember not to make the loss about you. I’ve observed that at times, people who only tangentially know the deceased post extensive messages about the death, tagging close family members. Researchers have called this behavior “grief-lite” or “grief porn,” and it’s a practice born in the social media age. I call it emotional rubbernecking, and you should avoid it.
Our study’s preliminary findings indicated that the most damaging messages to bereaved people were those that marginalized the death in some way, causing the grief to become disenfranchised. Trite sayings such as “Only the good die young” or “God must have needed another angel” are decidedly not helpful. Admit that the death was terrible, the current circumstances are terrible, and if you don’t know what to say … say that.
Comments like “At least she lived a full life,” “I know how you feel,” “You still have your husband” are not supportive. Instead, these comments invalidate the person’s grief.
Remember that people are fearful that others will forget their deceased loved ones. You can make sure that’s not true, even as the number of people lost recently is so great. Make a comment now. Send a message in a month. Send another in six months. And when the pandemic is over, when the food photos and political debates remain but the tragic announcements are less frequent, reach out, recognize the loss and let the person have his or her grief, yet again.
Complete Article ↪HERE↩!
After she landed in the hospital with a broken hip, Parkinson’s disease and the coronavirus, 84-year-old Dorothy “Poogie” Wyatt Shields made a request of her children: “Bring me home.”
Her request came as hospital patients around the world were dying alone, separated from their loved ones whether or not they had COVID-19, because of visitation restrictions aimed at curbing the spread of the virus.
Bringing home a terminally ill patient with COVID-19 bears extra challenges: In addition to the already daunting responsibility of managing their loved one’s care, families must take painstaking precautions to keep themselves safe.
Julia Shields, 53, one of Poogie Shields’ four children, said she had reservations about the risk of infection and how it might affect her family’s health and ability to care for her mother. “I didn’t want to bring my mom here, and have it where we’re all of a sudden collapsed in bed ourselves and can’t give her pain medicine and can’t take care of her,” she said.
But she and her siblings were determined to honor their mother’s wishes. So they stocked up on personal protective gear and converted the mudroom of Julia’s Greenwood, Virginia, home west of Charlottesville into a solarium where her mother could be closer to family.
Julia said she wasn’t sure how long her mother would survive; it could have been a few days or even a few months at her home. “She’s such a fighter,” she said.
Poogie Shields, a former guidance and addiction counselor, had an appetite for adventure, be it camping on the Appalachian Trail or moving her family to Paris for a year while writing a master’s thesis. After raising her children in Virginia, she set off to do volunteer work, helping homeless teenagers in Florida and pregnant women facing addiction in Washington, D.C.
But over the past 20 years, Parkinson’s disease gradually limited what she could do, and three years ago she moved into an assisted living community in Crozet, Virginia, about 5 miles from Julia’s home. At first, she walked all over the campus, taking yoga classes and playing trivia with friends. But in recent years, she could manage only short distances with a walker, and Parkinson’s, a progressive nervous system disorder, was affecting her voice, according to her daughter.
“She was the person who had the most interesting thing to say in the room,” Julia said. “It was sad. You just couldn’t hear what she had to say.”
In mid-March, as the pandemic spread, Shields spiked a fever and got tested for the coronavirus. On March 22, while self-isolating and awaiting her test results, she broke her hip and was taken to the UVA Health System University Hospital.
In the hospital, a rapid-results test came back positive for COVID-19.
The coronavirus wasn’t killing her: Her symptoms had largely subsided, and she wasn’t in respiratory distress, said Dr. Lily Hargrove, a private practice physician who had treated Shields for 15 years and advised her family.
The biggest problem was her hip. Surgery was an option, but Shields had already endured “an excruciating loss of independence” over the past two years, Hargrove said. Recovery from surgery — two to three months in a rehab center with no visitors because of efforts to slow the virus in most facilities — “would have been a nightmare,” Hargrove said, and would not have returned her to normal functioning. She said she and Shields had reached an understanding during the past year that her disease had progressed so far that “we were beyond the point of fixing things.”
Julia and her siblings consulted a palliative care specialist and decided to pursue hospice. The hospital and hospice staffs told the family “this was not to be taken lightly — not only her dying, her potential pain, and also us getting sick,” Julia said.
The family signed up with Hospice of the Piedmont, which is one of about 75 community-based, not-for-profit hospices in the National Partnership for Hospice Innovation (NPHI). Dr. Cameron Muir, NPHI’s chief innovation officer, said most hospices in the group have treated or prepared to treat COVID patients, despite the added risks for workers.
Many hospices are facing shortages in staffing and protective equipment due to the pandemic, prompting concern from some advocates that patients won’t get the care they need. Muir said hospices in his group have bulk-ordered protective equipment together.
With the pandemic, most NPHI hospices are seeing an increase in the number of people they’re caring for at home, Muir said, because hospitals are “eager to get people with advanced illness home if possible” to make room for COVID patients.
“Absolutely the safest place for frail elderly without COVID is in the home,” said Muir, who is also chief medical officer of Hospice of the Piedmont, and “if you’re COVID-positive, the best place to be quarantined is at home.”
Hospice of the Piedmont has shifted to telehealth when possible and has stocked up on protective gear so that staff and families can safely treat COVID patients, said CEO Ron Cottrell.
While the hospice gathered equipment, Julia and her family set to work creating a sterile-yet-welcoming solarium in her home. They cleared out the raincoats and lacrosse sticks from Julia’s mudroom. They rolled in a hospital bed next to a window overlooking the deck and hung a picture Julia’s daughter had painted.
They filled the windowsill with fresh daffodils. Julia’s husband and two children, 18 and 20, went to stay at a friend’s empty house, while one of her sisters moved in to help her care for their mother.
On March 25, Poogie Shields came home, sedated with pain medication. Out the window, she could see a redbud tree in bloom and, soon, the faces of her visiting grandchildren and other relatives.
Julia, a tax preparer, and her sister, an archaeologist, got into a rhythm of suiting up like hospital employees — in scrubs, gloves, shoe covers, masks and eye protection — every time they entered the room.
Their time together was peaceful, Julia said. Other family members hung out on the deck, 6 feet apart, just outside the window. Her sister brought an iPad to coordinate video calls and read aloud dozens of emails and cards.
“There was a fairly reasonable feeling of normalcy,” Julia said.
Over the course of several days, Poogie Shields became unable to eat, drink or swallow medication. With Hargrove’s advice, Julia and her sister managed her fentanyl patches and slipped morphine under her tongue.
As her mother began to lose awareness, Julia softly sang Episcopal hymns — “Abide With Me,” “Breathe on Me, Breath of God” — to comfort herself and her mother, just in case she could hear.
Poogie Shields’ last day “was very peaceful,” Julia said. “It was such a beautiful day.” Relatives had all come by to see her. There was “no anxiety about anything that we needed to figure out,” no last unburdening of unresolved feelings.
Julia said she and her sister were with their mother as she took her last breath at 8:30 p.m. on March 28. Hospice staff came to the house about three hours later. In the meantime, Julia said, “nothing needed to be done. It was just very calm.”
Hargrove said that in her 20 years of practice, “I’ve never had a patient die with such reported ease and grace.”
“The two daughters were extraordinarily brave,” she said. “They were committed to honoring their mom’s wishes.”
After their mother’s death, Julia and her sister disinfected the house before Julia’s family moved back in. No one in the family has become sick with COVID-19.
For other families, bringing COVID patients home might not be possible, especially if someone in the house is at a higher risk of serious complications from the virus, Hargrove noted.
“I would hate to have someone who was unable to bring someone home, who was dying of COVID-19, to think that they had somehow failed that person,” Hargrove said. “I would ask that people find grace and compassion for themselves if this is not available for them.”
Complete Article ↪HERE↩!
By Brad Dell
His little ribs rose, then fell, then rose, then fell, then stayed still. The spark left his green, curious eyes — I swear it wasn’t a trick of the light. They were dull … dead.
I loathed myself for letting my first cat be put to sleep without me by her side. I swore I’d be there for my second when he passed less than a year later. I swore I’d look him in the eye, even if it meant nothing to him. And so I did.
The odd thing was that he wasn’t afraid. He was calm. He’d spent a good life of hunting, cuddling, and lounging. He knew his place in nature’s cycle. I didn’t understand that. Not then.
But my time came.
Sepsis destroyed me. As my soul ripped loose from my bones, I gasped to my girlfriend that I loved her but I would soon need to die. Then I pissed the bed. I realized that dying isn’t romantic like in the movies. I stank from rolling around in a soiled, sweaty bed, and my voice was hoarse from begging for an end.
While death isn’t romantic, it can be peaceful. In my time, I’ve known many who have passed — they’re either ready or they’re not. I wasn’t yet ready. I was ugly and bitter in my death, outraged by the unfairness of this world.
Somehow, I survived.
The paradox of death is that it teaches you how to live. The tragedy of death is not everyone gets a chance to apply what they’ve learned.
I woke up in an unfamiliar world. All details seemed illuminated and emotions felt overwhelmingly potent. I cried a lot more, hugged a lot more, prayed a lot more, loved a lot more.
Former priorities fell away; ambition, money, and comfort lost their gleam. Each day during recovery, I composed an obituary in my head: “Boy dies of cystic fibrosis. He had caustic humor, good grades, and a decent savings account.” I craved depth and vowed to thrive with passion and weave a legacy of compassion.
Did my old friend know I’m sorry for calling him fat in fifth grade? Did my sister know I look up to her? Did my parents know I regret every single time I lashed out at them? Did everyone know that I mostly only pretended to love, yet always yearned to learn its power?
I lay in my soiled bed and tried recalling instances in which I’d helped people out of love rather than for the potential of a self-serving debt. I sobbed at the realization that I’d lost myself long, long ago. In prayer, I begged for redemption, for help with becoming the Brad I was designed to be.
It’s been 47 months since that prayer. I’m nowhere close to perfect, but I’m far from who I was. Today, my joy comes from expressions of vulnerability, wide smiles and belly laughs, the bonds forged through struggle, the light in people’s eyes, the warmth of another body, the tears poured in prayers, the little acts of love and the big acts of love, the feet that tap along to music, the winding conversations over meals, the exhilaration of adventure, the richness of sharing nature and sunsets with strangers.
I am ready to die, when that time comes again, though I’d love to learn even more about life with a third pass. Death is liberating, driving me to be fully present and live intentionally for the things that truly matter.
Like my old cat, I know my place in nature’s cycle. Mine is to love and be loved in return. Maybe that seems sappy to those who haven’t yet died. But one day you’ll understand, too.
Complete Article ↪HERE↩!
What Happens to Their Bodies?
A conversation with Amy Cunningham, Brooklyn’s environmentally-friendly funeral director.
by Grace Gedye
On a Brooklyn neighborhood forum, funeral director Amy Cunningham put out the call. Could anyone contribute items, like flowers, to an upcoming funeral? An elderly woman had died of coronavirus in a nursing home and had no family in the area. Florists in New York are closed, so one resident contributed lilacs from her backyard, the Associated Press reported. Another embroidered “Mom” on some fabric that would be placed on the casket, with the deceased woman’s family watching via livestream.
More than 16,000 people have died of Covid-19 in New York City, the epicenter of the outbreak in the U.S. Just as hospitals have struggled to keep up with the influx of sick people, the city has also struggled to accommodate all of the dead. The state has relaxed environmental regulations to allow crematoriums to operate around the clock, and the city has dispatched a fleet of mobile morgues. Burials on Hart Island, New York’s mass grave for bodies that aren’t claimed, or whose family cannot afford a funeral, have increased five-fold.
Funeral directors like Cunningham have been forced to adapt ceremonies and services around the contagious disease. Cunningham, the founder of Fitting Tribute Funeral Services, specializes in environmentally friendly burials. She and I talked about how funerals have changed in New York.
This conversation has been shortened and edited for clarity.
How is your work different since the coronavirus outbreak started in New York?
Well, my firm specialized in earth friendly burials, home funerals, and witnessed cremation services, and none of those services are currently possible in exactly the same way I was delivering them. Because of the novel coronavirus, families are saying goodbye—on a good day—with nursing assistants holding the cell phone to the ear of the dying person in a hospital that the family hasn’t even been able to enter.
I’ve got four caskets in my living room right now. That’s a little unusual.
The funerals I’m managing now involve the transporting of the deceased person in a white plastic body pouch to protect the funeral home personnel from any risk of the virus passing to them in the hours after death. That bag isn’t coming off at the funeral home. While it’s believed that the coronavirus expires within the body at the time of a death, there is said to be some risk to individuals in the hours immediately afterwards, perhaps because the lungs of the dead person still hold a bit of air, and as we move them they actually can exhale a little bit after death. Plastic body bags are a fact of life for now, but they are upsetting to me. They’re hardly eco-friendly, not remotely green. I’ve got folks looking into how we could develop something just as sturdy and kinder to the planet.
Another thing that’s different is that previously, if a death occurred on a Tuesday I could arrange for a burial or cremation two days, three days later, sometimes even the next day if the paperwork went smoothly. Because of the sheer number of dead that we’re managing, cremations are now being scheduled at the end of May.
Are there any basic things you need in order to provide your services that are either hard to get ahold of or that you’re running out of?
It seems likely that there will be a casket shortage eventually. I’ve personally solved that issue by bringing caskets into my living room at home. I live in a two-story limestone row house and I’ve got four caskets in my living room right now. I went ahead and had the casket company deliver them, and had my son and husband carry them in so that at least I’d have some caskets that were clean and ready to move when I needed them. That’s a little unusual.
Have there been an influx of families that are in need of death care services but can’t afford them? If so, what are their options?
Yes, I’m hearing from people who need a funeral, and are disappointed that the wait time for an affordable cremation is so long. Some have lost their jobs, have no money, and need to plan a funeral with a burial now that might cost $1500 to $6000. It’s pretty devastating. There was a time when the deaths were occurring so quickly that some funeral homes weren’t able to manage the sheer volume of the work and were referring people out to other firms. Those firms were helping us New York City funeral directors cremate the dead by taking them to other states. There’s so many deceased people, our crematories are overwhelmed. So, there are people driving deceased folk up to Pennsylvania, New Jersey, other areas where the crematories are a little less overwhelmed.
In the coming month, that’s going to ease up. Today in New York as you’re interviewing me, I’m not hearing the same sirens out in the streets that I was two weeks ago. So it could be correct that, as Governor Cuomo says, we’re leveling this off. But people out of work are still struggling and starting GoFundMe pages to help them with the cost of the funeral.
I will say this, however: I’m really impressed with the local funeral directors that are reducing their prices for families in that situation. How can you charge them the full rate? It just can’t happen. So, we’re offering people our services at a reduction.
What does your typical day look like right now?
The heavy lifting and placing in the casket is done by amazing folks I employ to help me at the funeral home. My day is mostly on the telephone with grieving families, trying to schedule and arrange these burials and cremations in a timely way. I’m spending a fair amount of my time explaining to families why only 10 family members can come to the cemetery. We’re trying to educate folks about the possibilities and Zoom memorials and new ways to grieve remotely so that we can have some sort of commemoration of the life as we manage the very very basic down-to-earth matter of a simple disposition right now.
What has been your advice to people who have lost family or friends to coronavirus? Either practical advice, or different advice you’re giving on how to grieve?
I had already been thinking that we place too much emphasis on the hour-long funeral service. Saying farewell to someone is really the task of a lifetime, and something that you do most intensely over the period of the first full year. So I’ve been coaching families to see that, yes, we’ve lost the gathering we’re most familiar with, but you will be able to find a way to mourn, and find community, and relate to your other family members in a way that will be new but restorative in surprising ways.
When I do have a casket in my car headed for a burial, we’ve been replacing traditional chapel gatherings with doing these outdoor block parades. I drive the car with the casket in it onto the actual block where the deceased person lived, and people can acknowledge the death as a neighborhood. I had one death caused by a heart attack. We have to remember that other sorts of deaths still occur in the age of the novel coronavirus. I drove to the man’s block, opened the car, and allowed people to approach the car while maintaining a safe distance from each other. They placed flowers in the car, and then the immediate family drove to the cemetery and stood at the lovely graveside service 6 to 10 feet apart. Good funeral, lots of love expressed.
I know you specialize in sustainable, or greener burials. Are you still able to do those kind services?
Yes. My real contribution as a funeral director in this moment is personally driving people upstate to eco-friendly cemeteries that will just bury simple caskets in the earth. The only problem is that there is this plastic body bag inside there that I never used to have to use. Most of the eco-friendly cemeteries are saying, “well, God, what can we do, we know it’s a crisis in our country, and a time of considerable suffering.” So, they may take that plastic bag for the short term as we work it out. In other words, the green burials I’m managing are just a bit less green than they used to be but we’re doing the best we can.
Do you think the pandemic will lead to any lasting changes in the funeral industry?
I hesitate before mentioning this because it doesn’t feel like a great time to criticize the conventional funeral industry. The men who have been in the business 40 years and were nearing retirement have flung themselves into this crisis and been so courageous.
However, maybe when we catch our breath, we’ll evaluate where we’re headed as an industry and how we might provide better services to more people, and take the drive to profit from the funeral out altogether by looking at cooperative funeral home structure, which is operating very successfully in the state of Washington.
In the old days prior to the Civil War, before the American funeral industry was formed, communities took care of their own. And it feels to me like we could attend to that kind of care again and find ways to make deaths less of a medical event, and more of a community-based experience. So, as I work hard and admire the conventional guys I know and work around, I’m at the same time thinking, “Gee, there must be a better way to give funeral services to people at an affordable rate, and in a loving way.”
Complete Article ↪HERE↩!
Covid-19 convinced me I couldn’t wait any longer.
By Whitney Ellenby
Whitney Ellenby is the author of “Autism Uncensored: Pulling Back the Curtain,” founder of the charitable venture Autism Ambassadors and a former Justice Department disability rights attorney.
Even before I uttered a word, my son knew something was off.
My flustered movements alerted him to a shift in equilibrium in the house. The statewide coronavirus shutdown had just been announced, and as I struggled to wrap my head around the profound adjustments I needed to make, the fear of a grave illness was rivaled by an entirely different threat: How would I explain the crisis to my profoundly autistic 19-year-old son?
Zack’s language and comprehension are truncated; he has no conspicuous understanding of global adversity, personal sacrifice or collective safety.
The stakes of being truthful were greater than you might imagine. I’ve gone to extraordinary lengths to ensure that Zack fully participates in his community, even forcing him to remain at indoor venues he feared such as movie theaters, restaurants and airplanes. My “inclusion by fire” methods feel vindicated by the fact that Zack regularly navigates the world with competence and zeal.
But there is one dire exception — his absolute intolerance of unexpected closures. Zack has no interest in the reason: All venues should be open according to his schedule. Delivering news of a sudden closure — of a splash park shut due to lightning, a movie sold out — is perilous. In seconds, Zack lashes out in frustration. Sometimes I absorb the blows and hold my ground to enforce upon him the reality that disappointment is a part of life; more often I scramble for alternatives to distract him.
And now I couldn’t. For a young man whose life quite literally revolves around predictable schedules and recreation, virtually everything he depended upon had been eviscerated overnight.
In March, I sat Zack down and explained: “Zack, I need you to listen to me, something very scary is happening. You know how awful it feels to be sick? Well, a sickness is spreading across the whole world, and our job is to help keep people safe. So for now, school is — closed. Movies are closed. Indoor pools are ….”
I braced for impact, but instead Zack studiously began echoing the refrain of “closed.” I was astonished. In the weeks that followed, Zack’s ability to adapt to his constricted life far exceeded my expectations and reinforced my decision to tell him the truth.
Except I had not told him the whole truth. Zack had no notion that, as he rode his bike carefree against the wind, people were dying. Zack had no concept of death. Because I hadn’t summoned the courage to explain it to him.
I’ve always considered my most important job to be arming Zack with the knowledge and experience to function as competently as possible in the world, especially after my husband and I are gone. But I have not prepared him for the fact that we will be gone. As I listened to stories of beloved mothers and fathers dying, I was gripped with heartbreak and fear — would I further postpone and hope neither of us got sick?
That felt immoral. It was time.
“Zack, I need to tell you something serious,” I began. “Many people are getting sick, and some of the people who go into the hospital to get help will not get better. They will die from this sickness.” Zack is a literal thinker who deals in absolutes and concrete visuals, not abstractions. So in response to his quizzical stare, I turned on the TV to still frames I had taped of body bags being moved into a truck.
“Zack, these bodies are ….”
“Sleeping?” he asserted, tentatively.
“Broken?” he then offered, borrowing a concept he applies to objects that I’ve reassured him would soon “be fixed.” Dreading his response, I answered, “No, they are not asleep or broken, they are dead. They will not wake up. They were too sick to be fixed. They are ….”
“Closed,” he whispered gravely.
A huge exhale escaped me. “Yes, Zack, they are closed,” I said, explaining through tears that this happens to every person at some point, that their life comes to an end. And how, even when people die, as hard as it is, the rest of us have to keep living without them.
Zack became still. His countenance darkened as he processed my words — and then suddenly he lashed out. But the target was the TV, with its cruel, wintry images of death, as Zack smashed his fists into the screen and even his own head. The universe was once again disordered and the outcome unacceptable to him. I interrupted the exertion not to comfort Zack but to redirect his blows toward a wall sturdy enough to absorb them. He was incredibly infuriated, which felt entirely appropriate. More essentially, with each strike I was certain the excruciating lesson was being slowly, agonizingly absorbed.
So far, Zack has not openly made the intellectual leap that this state of permanence, which is “closing” the lives of so many right now, will one day end mine and my husband’s. That he will one day lose us, but must persist. Now is not the time to make that linkage, but it will come. Engraved into his consciousness of how the world operates is a new notion that while some closures are temporary and fixable, others are unchangeable. For now, that is enough.
Complete Article ↪HERE↩!
A study published recently in JAMA Network highlights the need for improved pediatric advanced care for adolescents with terminal cancer. The research reveals a gap in understanding between parents and children when initiating and discussing critical conversations about end-of-life decisions.
“Advance care planning interventions are needed to improve families’ awareness and understanding of their teens’ end-of-life choices,” says principal investigator Maureen E. Lyon, Ph.D., a Children’s National Hospital clinical psychologist.
“Teens need to have a voice in their care and families are eager to know what their teens want, but those conversations can be difficult,” says Dr. Lyon. “Advance care planning interventions for parents and adolescents create a space where they can ask questions and be honest with each other.”
While families with adolescents with cancer are often spinning with the daily struggle of life, the authors say that clinicians presume that families understand adolescents’ treatment preferences for end-of-life care – and this can cause miscommunications. As has been seen not only in the pediatric setting, a lack of advance care planning is associated with increased hospitalization, poor quality of life, and legal actions.
The study involved a survey of 80 adolescent-family dyads (160 participants) from four tertiary care U.S. pediatric hospitals. From July 16, 2016, to April 30, 2019, the families were exposed to Family-Centered Pediatric Advance Care Planning for Teens With Cancer intervention sessions.
The results showed that family members’ understanding of their adolescent’s beliefs about the best time talk about end-of-life decisions was poor, with 86% of adolescents desiring an early conversation on the topic (before getting sick, while healthy, when first diagnosed, when first sick from a life-threatening illness, or all of the above), but with only 39% of families understanding this. This was particularly when it came to the topics of dying a natural death and being off life-support machines. Nevertheless, families’ did seem to have an excellent understanding of what was important to their adolescents in regards to wanting honest answers from their physician and understanding treatment choices.
The findings from the study can be found here in the article “Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals, and Beliefs About End-of-Life Care.”
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