As a Death Doula for a law firm, I have had the experience of attending many different deaths. Some deaths are attended by families, who stand at the bedside in stunned and awkward silence, waiting for the inevitable; while some families talk about trivial events, like politics, football, argue, or start discussing probate matters over the dying individual.
Some of our clients have come into my care after they have already become incapacitated. Because they have no family willing or able to serve as their healthcare agent, they find themselves alone and I have no way to converse with them about their final wishes.
In rare cases, I have been hired by thoughtful individuals who are aware of the need for a death advocate throughout the active dying process. A Death Doula is an advocate for the dying individual and the family to help facilitate and process what is occurring.
Most everyone has experienced a funeral, but not everyone has attended a death. Thus most experience comes by viewing the dying process from the living perspective. I want to share several aspects of death and dying that may not be expected.
You may not know death is imminent. I recently had an unusual experience where my client was in full organ failure and was being kept alive by medical intervention. In reality, there was no way they could save his body but he was mentally 90% clear when he was able to be awake. I had worked for this veteran for the last five years as we had begun planning for his inevitable demise and continued support of his wife.
The doctor may not explain, in direct, plain terms when death will happen. Granted, the doctor may explain the “likelihood” that death could occur, but one cannot 100% predict the outcome or the time frame in which these things occur. Many people don’t have the bandwidth at this emotional time to read between the lines to figure out what is being said. If you are lucky you may have a Death Doula or family member who is willing to spell out the actual possible outcomes. In one case, I had to inform my client he was dying even though he wasn’t aware of the severity of the situation and didn’t want to die. I needed my client to verify that his wishes, which we had spent years discussing, were still to be enacted.
As you pass you might not have the ability to communicate clearly. While your brain may be clear your body may not be able to communicate effectively. Or, it may be that you speak and move effectively but your brain is being affected to such a degree that its information is not reality. In both cases estate planning documents and an agent capable of carrying out your wishes can be extremely valuable.
A dying person wants to be gently touched. While this may not be true in every case, in my experiences with the elderly or people passing with chronic illnesses, it is true. Skin-to-skin interaction is psychologically, emotionally, and physically supportive in all ages. If you are not the hugging type there are many things you can do that can provide comfort and support. Consider that the dying is possibly unable to communicate what is uncomfortable for them but also may be physically sensitive. I suggest gently washing their feet, arms, and hands, lightly applying lotion, brushing their hair, light massage through the sheet, holding their hand or gently massaging their head/shoulders. Lightly rubbing the back, anything you do should be for short periods. I deeply recommend touch interaction. There is nothing more intimate than the emotional transference between the dying and the doula as being able to provide some support and deep acceptance of being touchable (and therefore loveable) even at death.
What are your cultural, religious or family death traditions?
No matter how much we prepare or plan, a natural death is likely a messy, spontaneous experience with unexpected situations and unalterable results. Nature is like that. Everything in this world dies in its way. Not only do plants, animals, and people come to an end but so do stories, relationships, seasons, actions, ideas, beliefs, dreams, illness, pain, growth, even weather, and environments.
Birth and death are the bookends of life. You had no control over your birth experience and yet, while we can prepare ourselves and our families and friends for death on financial, spiritual, and emotional levels, most are not interested in developing that practice. Conversations and exploration into your death culture and burial options help bring the foggy unknown into clear hopes and wishes that you and your family/community can enact.
A 2021 picture of Douglas Hulse on his niece’s phone. Hulse, a former pilot, was put in a guardianship in Florida where he lived and moved into a nursing home without anyone telling his family in Pennsylvania.
Many older people are one medical emergency away from a court-appointed guardian taking control of their lives
When Douglas Hulse pulled his Ford Mustang convertible into a Florida gas station three years ago, he looked so distressed that someone called 911.
An ambulance rushed him to Orlando Health South Seminole Hospital, where doctors said he had a stroke. At 80, the retired pilot who had flown famous passengers around the country could no longer care for himself.
But Hulse lived alone — as 3 out of 5 Americans in their 80s do.
A hospital can be liable if a patient is discharged into an unsafe environment. Because Hulse lived alone and the hospital officials saw no sign that he had family, that put them in a bind when his health didn’t improve. So they argued in court that he was no longer capable of making his own decisions and needed a guardian — a caretaker with enormous legal power.
When a judge agreed, Hulse lost basic freedoms: He couldn’t spend his own money or decide where to live. The lifelong Republican who had just cast his ballot in the 2020 presidential primary even lost his right to vote. He was quickly moved to a nursing home. His new guardian, a woman he had never met, began selling his house and his belongings.
Many people lose their fundamental rights when a judge places them in a guardianship giving another person, often a stranger, the power to make the ailing person’s financial and medical decisions.
Hulse had joined 1 million Americans in a guardianship,a court-sanctioned arrangement created to protect vulnerable people — some young, but many elderly. The system has been widely criticized for inviting abuse and theft. Local judges give extraordinary power to a guardian, including access to the bank account of the person in their care, despite a lack of effective ways to monitor them. When excessive billing, missing money and other abuses are discovered, guardians are rarely punished. Prosecutors are keenly aware they were appointed by a judge.
As America ages, there is new focus on this legal arrangement, especially in Florida, a mecca for seniors where state officials have calledtherising number of elderly the “silver tsunami.” Already, Florida has 2 million residents 75 or older — more than the entire population of 14 other states. Many moved here from other parts of the country, far from family, and are showing up alone in emergency rooms.
The Orlando Health South Seminole Hospital in Longwood, Fla.
What happened to Hulse over the pastthree years shines a light on the serious flaws in this government system and on the hospital pipeline that thrust Hulse into it. During the coronavirus pandemic, more hospitals went to court to seek guardianships; it was a way to legally move out patients and free up beds. Today, the practice quietly continues as an efficient way to discharge elderly patients who cost hospitals money the longer they stay.
“This should scare people to death,” said Rick Black, the founder of the Center for Estate Administration Reform who has examined thousands of guardianship cases and has seen a rise in hospitals initiating them. “This is a common practice nationwide, and its adoption is growing.”
In court, the Orlando hospital requested that Hulse be assigned Dina Carlson, a 51-year-old former real estate agent who became a professional guardian. After a judge assigned her, Hulse was immediately moved out of the hospital and into a nursing home. Carlson’s sale of his home raised suspicions because of its seeminglylow price in a hot market, and an inspector general’s investigation laterfound “probable cause” of exploitation of an elderly person and a scheme to defraud.
Carlson denied any wrongdoing, and no criminal investigation was ever opened. “I am a little bit salty about this whole thing,” Carlson said in an interview. She said she wanted“to be a ray of sunshine” for elderly people.
Guardianships are not well understood. Rules vary by jurisdiction, and key information is often sealed by judges.
“People don’t realize how abusive the system is,” said Pinellas County Circuit Court Clerk Ken Burke, who led a recent Florida task force to improve guardianships. “If they knew, there would be bigger cries for reform.”
Very often, the person in a guardianship is unable to publicly complain and has nobody in their life to do it for them.
But it turned out Hulse did have family, and they were searching for him.
Jonathan Thompson holds a portrait of his uncle, Douglas Hulse, as he and his sister, Katie Thompson, sort through old family pictures. When Hulse was assigned a guardian, no one told his family.
Douglas Hulse was born in 1939 and raised in McLean, Va., where his father was a lobbyist for the trucking industry. In the 1950s, Hulse enrolled in a Florida college and became a pilot.
Like his father, Hulse was a Republican who loved to talk politics. He also drew caricatures of every president in the last half century. After flying Henry Kissinger and Alexander Haig, former Republican secretaries of state, he proudly showed off photos he took of them to his sister, niece and nephew.
He never married or had children. He kept busy, teaching flying and taekwondo. But when he retired he spent more time alone. Five residents on his street in Lake Mary, near Orlando, said they barely knew the tall, blue-eyed neighbor. He had lived there 25 years, longer than many in a transient place.
Raymond Charest, president of the Seminole County Gun and Archery Association, said that in the 1990s Hulse taught members about how to safely handle and store guns but that recently he wasn’t involved in the club. “I would see him shooting out there. But it was just, ‘Hey, how are you doing?’ and that was it.”
For a year, Katie Thompson, who lives in Pennsylvania, did not know what happened to her uncle, who lived in Florida.
Katie Thompson, Hulse’s niece, said for years her uncle regularly visited her mother, father, brother and her in the Philadelphia area. She also went to see him at his three-bedroom Florida home full of exceptional items he collected in his travels, including a Las Vegas-style slot machine.
But his visits stopped when his sister, Katie’s mother, developed dementia before she died in 2018. Hulse had seen his own mother die the same way. “I think it just got too hard for him,” his niece said.
After Hulse’s only sibling passed away, he became harder to reach, but he eventually responded to calls and emails.
After his stroke, Hulse was confused and apparently unable to tell anyone to call his family. It’s unclearwhat efforts the hospital made to track down any relatives.
Geo Morales, a spokesman for the Orlando Health South Seminole Hospital, said he could not discuss details of Hulse’s case because of privacy laws. He emailed a statement that said the hospital works “with various community partners in an attempt to reach next of kin. However, reaching a patient’s next of kin is not always possible.”
“We are seeing more of these patients with dementia and other ailments who live alone and/or are estranged from relatives,” Morales said in an email. He strongly urged people to draw up a will or designate someone to make their health decisions and to note this in their medical file.
Hulse had not. In these cases, court records show, hospitals often turn to guardianships, even though they are widely considered a last resort and difficult to reverse.
For generations, judges have been assigning a relative or close friend as the protector of someone unable to make their own decisions. But more people are socially isolated and have no one they can count on at the end of their life. Even many people with close relatives are estranged from them.
In many societies, family members of different generations live under one roof. But one of the most dramatic shifts in the American lifestyle is single-person households. Many live alone beginning in their 20s and by the time they are in their 80s, most live by themselves.
So judges now often assign professional guardians, a person paid to care for someone they don’t know. Carlson told the court she was already caring for 18 others when she was assigned to Hulse. Carlson charged him $65 an hour, according to her bills filed in court. When a judge signed off, she paid herself from Hulse’s bank account.
In some states, the only requirement to be a guardian is to be 18 years old. Florida has more requirements including a background and credit check. But still, compare the 40-hour training course with, for instance, the 900 educational hours required to become a licensed barber.
Yet these caretakers control people’s lives and money. In just one Florida county, Palm Beach, guardians control about $1 billion, according to Anthony Palmieri, deputy inspector general for the Palm Beach Circuit Court.
“You have your nail techs and tennis pros — their business is not so good and they want something more lucrative and they’re jumping into guardianship,” Palmieri said.
But adding an independent monitor from outside the court, a frequent recommendation, is expensive. “The system would be cured, in my opinion, by the Department of Elder Affairs taking responsibility for guardianship” said Burke, the Pinellas court clerk.
In Florida, even funding a statewide guardianship database was a battle. Currently, there isn’t an official number of how many people are in them; best estimates are about 50,000. Each county keeps its own records, and some do that better than others. When the database goes online, it will give the first statistical snapshot of the system.
Critics have called for a uniform system with more oversight. But several Florida officials said those who benefit from the current, complex system, including lawyers, impede reform. Efforts to make attorneys’ fees in these cases more publicly visible have also failed.
“There are a lot of great attorneys out there,” Burke said. But the court clerk said there has been pushback from the Real Property, Probate and Trust Law Section of the Florida Bar, adding, “It’s a trade union for all practical purposes, and it protects their members and the fees they receive.”
These attorneys are influential in the state legislature, where their expertise is often sought to draft laws related to guardianships and estates.
John Moran, chair-elect of the Florida Bar’s Real Property, Probate and Trust Section, said far from blocking improvements, it has stated policy positions that seek reforms, including more transparency. Asked why legal fees cannot be more readily known, Moran cited privacy concerns of the incapacitated person. He also emphasized that “no lawyer gets paid without a judge’s approval.”
So the system with few guardrails continues. Court clerks audit guardians’ reports that detail how they spend the money of the person in their care, among other things. Any irregularities are to be flagged to a judge. But clerks are swamped, with little time to read through a case file that is often thousands of pages.
Grant Maloy, the Seminole County court clerk, said his office has a far bigger caseload today than 15 years ago yet a smaller budget.
The judges are overloaded, too. Pinellas County has two judges and two magistrates overseeing 3,000 guardianships — in addition to other types of cases.
No witness or body camera accompanies a guardian into a person’s home. They are trusted to accurately inventory all valuables in their court report. “There could be $5,000 stuffed under the sofa, and if the guardian pocketed it, who would know?” said Burke, the Pinellas court clerk.
The task force organized by the state clerks and comptrollers last year said hospitals should find a less drastic way to deal with patients costing them money, such as authorizing someone to be their power of attorney or health surrogate. It also sought a ban on requesting a specific guardian because that raises concerns about the guardian’s allegiance — is it to the patient or the hospital giving them work?
AWashington Post review ofguardianship records in central Florida found scores of recent petitions by hospitals seeking a guardian for patients 65 and older, and many asked for a specific professional guardian.
In April 2020, when Hulse was ready to be discharged, a staff member of the Orlando hospital signed a petition to the court stating that he had “no one to take care of the financial and medical decisions.”
Hulse, like most patients over 65, was covered by Medicare. It pays the hospital by diagnosis, not length of stay, an attempt to stop excessive billing. Generally it pays a hospital $23,000 for an elderly stroke patient in Orlando, a sum that assumes a five-day stay. After that, a hospital starts losing money. A new patient in the same bed would bring in thousands of dollars a day.
The American Hospital Association said more patients are staying “excessive days” and has lobbied for increased Medicare payments. Many hospitals are alsooverwhelmed by people who are homeless or have a mental illness and other patientsunable to pay their bills. An AHA spokesman also said a hospital may initiate a guardianship but a judge approves it.
Laura Sterling, an attorney hired by the Orlando hospital, recommended Carlson as Hulse’s guardian. In Florida, lawyers represent guardians in court, and Sterling was Carlson’s lawyer. In her court filing that requested Carlson, Sterling does not mention that if Carlson was assigned, she also would be paid as her lawyer, at a rate of $300 an hour.
One of the motions filed in court in Hulse’s guardianship case was for attorneys’ fees, including for time spent on the sale of his home.
Sterling did not respond to requests for comment. There is no Florida rule prohibiting a lawyer from representing both the hospital and the guardian the hospital recommended in the same case.
Moran, from the Florida Bar, said he could not speak for the lawyers’ group but said that scenario raised “all kinds of red flags.”
Sterling’s role in Hulse’s case was largely to file court motions. One sought approval for a monthly transfer of $10,000 from Hulse’s brokerage account to his checking account so Carlson could pay his nursing home and other bills. Another asked the court for $2,925 for Carlson, for time spent opening Hulse’s mail, arranging physical therapy and other tasks during her first four months. The money to pay Sterling and Carlson came from Hulse’s accounts, which had more than $1.5 million, according to a note in his file.
In August 2020, after Hulse had fallen five times at the Lake Mary nursing home, Carlson moved him to a smaller facility. She also started liquidating his possessions, reporting to the court that she sold his cars, paintings, a diamond ring, camera equipment and guns. Many items were sold in cash at an estate sale, according to neighbors who went to it. It’s unclear how much Carlson reported earning for Hulse; most financial details are kept sealed.
Hulse’s former home on a quiet, pretty street in Lake Mary, Fla.
In April 2021, Carlson signed an agreement to sell Hulse’s house withKimberly and Mark Adams, husband-and-wife real estate agents who lived in her gated community lined with palm trees, giving them a 6 percent commission, an amount typically split between the seller’s and buyer’s agents. Carlson quickly sold the home for $215,000 before it was even publicly known to be on the market, according to the inspector general’s investigation. A company called Harding Street Homes bought Hulse’s home and resold it a few months later for $347,000 — $132,000 more than Hulse got for it. Efforts to reach the person who runs that company were unsuccessful.
Soon after the home was sold, Katie Thompson, Hulse’s niece, expanded her search for her uncle. Busy with her job and her first baby, she had not realized for months that her brother and father also had not heard from Hulse. She was a legal researcher who used Westlaw, an online legal database, and when she typed her uncle’s name into it, she was stunned to see him listed in a guardianship case.
“How could the hospital do this?” she thought. Since older people end up in an emergency room, she figured there must be a system for contacting family. “If they just called me none of this would have happened.”
In the days after Carlson became Hulse’s guardian, she did not call his relatives, either. Carlson said it was unfortunate but no one’s fault: “How does a person find out about somebody who doesn’t live in the same state? About family who don’t have the same last name? I didn’t have anybody’s name to Google.”
Thompson has her own regrets. For one thing, she wished she had gotten on a plane earlier despite worries about the pandemic.
Katie and Jonathan Thompson sent a letter to a judge in the Florida courthouse where their uncle had been assigned a guardian. They wanted to know where their uncle was and if he was safe.
On top of everything else, she said, she and her brother were helping their father, heartbroken over the death of their mother. “I kept thinking if something was really wrong with my uncle I would have gotten a call,” she said.
Thompson and her brother began calling those involved in the court case. But nobody answered their key question: Where was Hulse?
Finally, a court clerk advised them to write a letter to the court.
“We want to know where our uncle is, that he is safe and well cared for, and that his money was being well-stewarded so that he can remain so,” Katie Thompson wrote on July 28, 2021, to Seminole County Circuit Court Judge Donna Goerner. “We want to be able to be in contact with him.”
Months passed with no reply.
Hillary Hogue, a citizen watchdog, searches through guardianship cases looking for red flags at her home in Naples, Fla.
Around the start of 2022, Hillary Hogue was sitting at her kitchen table in Naples, Fla., scrolling online through guardianship cases, when she randomly clicked on Hulse’s.
“I look for red flags and when you see a hospital is involved, it’s a red flag,” said Hogue. A single mom of two teenage boys, she became an unpaid citizen watchdog after her own horrible guardianship experience. To get her father released from one, she paid over $100,000 in legal fees. He now lives with her.
Hogue knew other cases where hospitals did not notify relatives before setting in motion a hard-to-stop legal process. “It’s just outrageous. Doesn’t anyone care about Mr. Hulse?”
She zeroed in on the price of Hulse’s home, which seemed remarkably low to her, especially after she looked up more information about it.Aware of other cases where guardians sold homes at bargain rates to friends or for kickbacks, Hogue filed a complaint with the office that regulates guardians, knowing it would draw scrutiny to Hulse’s case.
Because the system has so little official oversight, Hillary Hogue has devoted a huge amount of her time to scrutinizing case files and searching for signs that an elderly or vulnerable person is being exploited.Hogue, who spent $100,000 in legal fees to get her father released from a guardianship, cares for the 94-year-old in her home.
Katie Thompson, meanwhile, inquired about getting her uncle released from his guardianship. The Florida lawyer she contacted told her that she could spend $20,000 trying, with no guarantee of success. Hulse’s health was worsening and soon, any hope she had of moving him to Pennsylvania so she could manage his care became less of an option.
In January 2022, Carlson finally contacted the family. She called Jonathan Thompson, Hulse’s nephew, who believes her call was prompted by the family’s letter to the judge six months earlier. “I guess the letter finally got to the top of someone’s pile,” he said.
Carlson outlined Hulse’s medical problems and said he probably had a series of strokes. Because of the pandemic, she said, for a long stretch at the start of the guardianship she had not met him in person.She offered to arrange FaceTime calls. and soon Katie and Jonathan were talking to Hulse about old family trips to Gettysburg, Pa., and Cape Canaveral, Fla.
But they were wary. A state investigator, spurred by Hogue’s complaint, had called them, asking questions about Carlson.
They had their own questions: Since Carlson knew Hulse had the money for in-home aides why was he in a strange place that added to his confusion? Didn’t she see their cards mailed to his home or their contacts in his phone? And, why would a former real estate agent undersell a home without advertising it?
In July 2022, the inspector general’s office issued a critical report, a copy of which was obtained by The Post through a Freedom of Information Act request.
It stated that Carlson, when seeking court approval for the sale of Hulse’s home, submitted a “deficient, deceptive, and fraudulent” comparative market analysis supplied by Kimberly Adams, the real estate agent. Hulse’s home was “undervalued” and not publicly advertised.
The inspector general’s investigation also found no permits required for significant renovation. It concluded that after “superficial changes,” Hulse’s home was “flipped” for a big profit for the buyer —money that Hulse lost out on.
The inspector general’s office, lacking the investigative power of law enforcement, including the ability to subpoena bank records, pushed for a criminal investigation. It urged law enforcement to look into the handling of Hulse home and two others Carlson sold with the same real estate agents, stressing it had found “probable cause” that Carlson and the real estate agents “engaged in a scheme to defraud.”
Reached by phone, Kimberly Adams denied knowing anything about the inspector general investigation: “I honestly don’t know what you are referring to … I sell property all the time.”
Mark Adams did not return phone calls.
Carlson defended her sale of Hulse’s home. She told a state investigator that it was in “very poor condition,” according to the inspector general report, and that “it wasn’t safe to allow the general public” inside because there were “a lot of valuables in the house, a lot of guns and a lot of ammo as well.”
But Hulse’s family said he kept his guns in a safe, and Carlson billed Hulse for finding locksmiths to open his gun safe.
In The Post interview, Carlson said there are ways to improve the guardianship system but most importantly family should take care of their relatives. Then she quickly added, “In Doug’s case, no one knew about his family.”
Katie and Jonathan Thompson, Hulse’s niece and nephew, look at old family pictures.
Carlson did not answer questions about whether she saw the names and addresses of Hulse’s niece and nephew on cards and gifts mailed to his home. She also distanced herself from hospitals: “I have never met anyone at the hospital. Lawyers do.”
Carlson said she got Hulse’s case when “a lawyer” sent an email to her and other professional guardians, asking if anyone had “the bandwidth” to care for another patient leaving a hospital.
In February, Katie Thompson did not meet Carlson when she flew to Orlando with her 3-month-old, her second child, to visit her uncle. He seemed comforted by the photos she brought of his childhood home in Virginia, of her mother and him when they were young. “He was very sick then. I was grateful for the time with him.”
On March 16, the Florida Department of Law Enforcement said its preliminary inquiry found “no evidence” to warrant a criminal investigation “at this time,” according to an email received in the FOIA request.
Advocates for the elderly say police and prosecutors often do not treat financial exploitation of elderly people seriously enough and are reluctant to sink time into cases where the only witness has dementia, if still alive.
Two days after the state declined to pursue a criminal investigation, Hulse died.
Carlson had prepaid for the same basic cremation package she purchases for many in her care. Hulse’s family had his ashes buried with his parents on Long Island.
Katie Thompson received a small box from Carlson with photos and a few other items that belonged to her uncle. She and her brother are now waiting to learn what is left in his estate.
The Florida Department of Elder Affairs, after being contacted by The Post, reprimanded Carlson for her failure to file timely reports. Her penalty: She must take eight more hours of classroom training.
“Not even a slap on the wrist,” said Hogue. “The result is the corruption continues, and it only gets worse, bigger and bigger.”
Said Katie Thompson, “This system trusts a person to be a guardian angel, but people are not.”
Talking to your parents about their end-of-life wishes may feel like an uncomfortable or morbid topic to bring up, and one that’s tempting to avoid altogether. But you don’t want to wait until your parents are in the midst of a health crisis to have these discussions when stress levels are high and they may have trouble communicating their wishes.
According to The National Hospice Foundation, talking about end-of-life wishes preemptively “greatly reduces the stress of making decisions about end-of-life care under duress. By preparing in advance, you can avoid some of the uncertainty and anxiety associated with not knowing what your loved ones want. Instead, you can make an educated decision that includes the advice and input of loved ones.”
We asked end-of-life experts to share some of the uncomfortable but important questions to ask your parents. Below, they also offer advice on how to approach these daunting conversations.
1. Do you have an up-to-date advance care directive?
Advanced directives include legal documents such as a living will and medical power of attorney. A living will explains what health care treatment a person would — and would not — like to receive near the end of life, or if they are otherwise unable to speak for themselves. A medical power of attorney — sometimes referred to as a durable power of attorney for health care — is a document naming the person who will be responsible for making medical decisions if the patient cannot. It’s important that your parents not only put these preferences in writing, but also talk through them with you so you can properly honor their wishes.
Only one-third of Americans have advanced care directives in place, “leaving family members often struggling to determine what their parent’s wishes are or making choices that they may not have made for themselves,” Loren Talbot, director of communications for the International End-Of-Life Doula Association (INELDA), told HuffPost. “There are resources that are culturally competent and multi-language guides to help walk your folks through the process. Make sure you review by the state you live in.”
Dr. VJ Periyakoil is a palliative care doctor, as well as the founder and director of the Stanford Letter Project, a tool that helps people plan for their future including end-of-life medical care, using different letter templates.
For example, their “What Matters Most” template “helps a person write a letter to their doctor and health care team about their goals of care and their values,” Periyakoil told HuffPost. “Family members can use our letter template to have a gentle conversation with their parents and help them complete their letter advance directive to their doctor.”
It includes prompts about how medical decisions are made in the family, how bad news is handled, whether they’d want to be put on a ventilator (breathing machine) or sedated if they were in extreme pain.
“The goal of this conversation is to ensure that our parents have a voice in their care and give them ample opportunity to provide us with anticipatory guidance,” Periyakoil told HuffPost.
2. Have you thought about what you want the end of your life to look like? If so, can you share what you’re envisioning?
Some folks have a clear picture of what they want theirs to look like; others may avoid such thoughts, Talbot said. This question will help you understand their desires so you know how to best support them when this time comes.
“Just let them talk at that moment and listen. Some possible follow-up could be: Do you know where you want to be — home or care facility? What would the room look like? Does it have pictures of their loved ones pinned up or specific music playing as they are actively dying?” she said.
“Some of the same choices we make during life, we can plan for at death. Do you want to have any rituals or customs take place prior to death? There are so many questions that can be shared to help people really define their needs. End-of-life doulas are trained in asking these questions, and can support individuals and their families to create a plan.”
“The time to broach the conversation is now. It doesn’t serve you or your loved one if you continue to avoid it or ignore the reality of death.”
– Aditi Sethi, hospice physician and end-of-life doula
You might also ask about how flexible your parent is about potential living arrangements in the event that their caregiving needs increase, said hospice physician and end-of-life doula Aditi Sethi.
For example: “Would you move into our home with our three kids so we could take care of you? Or could we move in with you?” Sethi, who is also the executive director of Center for Conscious Living and Dying, told HuffPost.
“There is fear amongst some parents that their children are too busy to care for them or incapable for various reasons. With our caregiver crisis, aging population, undesirable options for care — few people want to go to nursing homes and few can afford 24/7 care in the home — it is imperative that we all get creative and let go of being rigid to how it ought to be.”
3. What do you expect of me and your other kids as you approach your dying season?
This conversation might include asking your parents about how involved they’d like you to be with things like personal care — bathing them or repositioning them in bed, for example.
“Being clear with your loved ones about their wishes for their care, assumptions and expectations of your involvement, can alleviate the stress of having to decide at the last minute or do something that will cause more agitation, resentment and hard feelings,” Sethi said.
“This is especially true for cultural norms and expectations in a modern world where children are not always local and there may be some unspoken assumptions and expectations of them that may not be met due to obligations, commitments,” she added.
4. What do you want us to do with your belongings after you’re gone?
Dealing with a deceased loved one’s possessions “can be a daunting task if not addressed or discussed prior to a death” — and one that can stir up a lot of conflict among living family members, said Sethi. So it’s best to talk this through with your parents ahead of time.
“There is much involved in distributing, selling, discarding or dispersing of belongings, cherished objects, furniture, cars, house, etc.,” she said. “It’s helpful for your loved ones still alive if you organize paperwork, designate your wishes for where personal objects are going — this avoids disagreements, drama and ambiguity — and get your affairs in order as much as possible before you go.”
5. What would you like to happen to your body after you die?
While it’s important to talk about their preferences for how their belongings are handled, it’s also important to discuss what will happen to their physical body.
“Do they know what their options are after they die? Have they considered a brain donation, what type of service they want, a home funeral, a green burial, a traditional funeral or cremation?” Talbot said. “There are so many more options today then they may even know. Knowing and asking what they may want after death is honoring their autonomy during their life.”
6. If you die before your spouse, what resources are available to help mom/dad as they age?
These resources might include long-term care insurance or money set aside for the care of an aging parent, Sethi said.
“Some parents have already bought into a retirement community. It’s important to know these things to best care for your living parent,” she said.
Advice On How To Broach These Conversations
End-of-life professionals share guidance on how to approach these difficult conversations with your parents.
First, know that it may never feel like the “right” time to talk about your parents’ end-of-life wishes. Don’t put off these conversations or wait for the perfect moment to strike because then they may never happen.
“The time to broach the conversation is now,” Sethi said. “It doesn’t serve you or your loved one if you continue to avoid it or ignore the reality of death.”
If you try to talk about end-of-life wishes when your parents are healthy, it’s possible they’ll think it’s “too premature,” she said.
“If you do it over the holiday dinner table when all the family is together, it’s ‘too serious,’ ‘too morbid’ or ‘not the proper time,’” Sethi said.
But if you hold off on talking about this until they’re diagnosed with a terminal illness, your family may still want to avoid having these discussions because it seems pessimistic, and they’d rather stay hopeful that things will turn around.
“And then, as someone is clearly dying, family may not want to broach the conversation for fear it may cause anxiety or depression — and oftentimes family and friends don’t now how to broach this conversation,” Sethi said.
She suggests revisiting end-of-life discussions roughly every three to five years or when there’s a major life event such as a divorce, serious diagnosis or decline in their health.
To open up the discussion, Periyakoil said you can try this pitch, which she has tested and said “works really well.”
“I am getting old, and you both are getting older. This is a wonderful thing for our family, and I hope we have many wonderful years together. As we prepare for the future, I would like us to think about completing some simple forms that will help our doctors and our family best support us,” she told HuffPost.
“If you get push back like, ‘Not now!’ or ‘It’s too early,’ you should gently respond, ‘It is always too early until it is too late.’”
No adult is ever too young or too old to start discussing these decisions, Periyakoil said. In fact, when you’re having these conversations with your parents, you can also start to contemplate your own preferences if you haven’t already.
Another way into the conversation is by leaning into what your family is interested in, Talbot said.
“If they love movies, there are so many great end-of-life films out there. If they or you love hosting dinner parties, consider a ‘Death Over Dinner’ night. Having conversations about planning for end-of-life and death can be healing and help to alleviate family conflict and unrecognized wishes.”
Rosalynn Carter, whose unflagging advocacy for mental health reform and on behalf of human rights, democracy, and health programs redefined the role of a president’s wife, died on November 19 at age 96.
Half a year earlier, her family had shared publicly that Rosalynn had been diagnosed with dementia. She began receiving hospice care — i.e., end-of-life comfort care for patients and caregivers — at home in Plains, Georgia, two days before her death and died there peacefully.
Her husband, former President Jimmy Carter, also opted to receive hospice care nine months ago after multiple medical problems landed him in and out of the hospital. Although his family thought he was in his last days when he made the choice, he has surpassed expectations. “Rosalynn was my equal partner in everything I ever accomplished,” he said in a statement on the day of her death.
It’s not clear why the couple were in hospice care for such different durations. But in that difference are echoes of a nationwide phenomenon: The way hospice is paid for — and the way eligibility is determined — makes it a good fit for people with terminal illnesses with predictable end-of-life courses, like cancer. But for Americans with dementia, hospice care often becomes available much later in the illness than it’s needed — or is offered and then withdrawn repeatedly over the course of a long decline in health status.
To be clear, there’s no evidence this was Rosalynn Carter’s experience. But as both Carters’ end-of-life choices have drawn attention to hospice care and the value it can bring, it’s worth looking at who it works for, and who it doesn’t. The truth is that the US’s current hospice model doesn’t serve people with dementia as well as it could. Here’s why, and what could make it better.
Hospice care focuses on symptom relief and support for dying patients and their families
Many Americans hear “hospice” and think it’s equivalent to giving up.
In fact, hospice care is a type of medical care that centers a patient’s goals — and provides support to their caregivers — when they’re nearing the end of life. And as Jimmy Carter has so transparently shown us, the shift in care can be surprisingly nourishing.
In the US, the hospice approach and the mechanism to pay for it are two different things, explained Carolyn Clevenger, a professor and nurse practitioner who leads a dementia care clinic at Emory Healthcare in Atlanta. “There’s the hospice philosophy,” she said, and “there’s the hospice benefit.” This is what makes hospice care so different from other treatment approaches in the US: It not only prioritizes comfort over cure, but it also switches the patient over to a totally different insurance plan, often called the hospice benefit. (Medicare, Medicaid, and most private insurance plans have a hospice benefit.) As a result, all the care, supplies, and equipment a hospice organization provides its patients is generally fully paid for by the benefit.
The approach focuses on providing symptom relief rather than curative treatment. It generally includes a complete package of services to care for both the physical and emotional symptoms that come with nearing the end of life, and it provides support for both the patient and the family. A person in hospice care could get specialized medical equipment, such as a hospital bed, some home care, and in-home nurse visits. They and their families also benefit from social worker services, grief counseling, and spiritual services.
Hospice care reduces what insurers pay for care at the end of life. People in hospice typically don’t receive much pricey in-hospital care, so even though their insurer pays for a lot of other services, they ultimately save money. A study published earlier this year by NORC showed that for Medicare beneficiaries who got hospice care in their last year of life, Medicare spending was $3.5 billion less — more than 3 percent lower — than it was among those who didn’t.
But those cost savings don’t come at the expense of the patient’s well-being. In the same study, patients and families in hospice reported better quality of life and pain control, less physical and emotional distress, and less prolonged grief.
Lots of patients with longer life expectancies would benefit from hospice care, but can’t get it paid for
The hospice benefit makes important services available for seriously ill patients and their families. But to qualify for it, a person needs to have a life expectancy of less than six months. Where does that leave people who need the same services, but don’t have as grave a prognosis?
For people whose serious illness causes them a lot of symptoms and their caregivers a lot of strain, the broader field of palliative care — of which hospice is sort of a subset — can be extremely helpful, even when the life expectancy is relatively long. But in the US, the difference is that while palliative care can prescribe these services, it cannot generally pay for them the way the same services are paid for when they’re provided under hospice care.
In the US, there’s a stark difference between what regular insurance plans pay for and what hospice pays for. So unless they qualify for hospice, it’s hard for many Americans to get the full benefit of a comfort-oriented approach without breaking the bank. That’s complicated by the fact that doctors, patients, and caregivers often have a difficult time approaching conversations about the end of life.
The result of linking hospice access to a six-month prognosis leads to both overuse and underuse of the benefit, said Clevenger. Overuse comes into play when providers fudge a prognosis to get badly needed services that hospice provides for a patient who might not be terminally ill. Underuse happens among terminally ill people whose end-of-life planning has been delayed.
By the time they qualify for hospice, people with dementia look very different from people with other terminal illnesses
What makes things particularly challenging for people with dementia is that it often progresses at a slower pace than other life-threatening conditions. By the time they get to the point where they qualify for hospice, they are much sicker than with other conditions, and their family is under much more strain than the families of others.
hat means “that person and that family’s experience is going to look very, very different from almost every other person who elects the benefit,” said Rory Farrand, vice president of palliative and advanced medicine at the National Hospice and Palliative Care Organization (NHPCO).
It’s a little easier to understand if you compare dementia with a condition like cancer. When a person with cancer runs out of curative options (like chemotherapy or radiation), health care providers can usually predict how many months they have to live within a reasonable margin of error. In many cases, people with the condition are still relatively functional at the time a provider tells them they have less than half a year to live.
It’s different for dementia, said Farrand. Dementia symptoms usually progress slowly, and there is no definitive treatment that cures it. According to the federal government’s criteria, to have a life expectancy of six months or less, people with dementia “basically have to be at a very, very, very, very advanced aspect of the illness — meaning that you are bedbound, you’re incontinent of bowel and bladder, a person has very few meaningful words,” said Farrand.<
By that point, a person with dementia has likely been unable to function independently for a long time. Their caregivers — usually, their family — will have been bearing the strain of helping them dress, bathe, eat, and care for themselves for years. Additionally, the person has lost so much of their ability to make decisions that they can’t participate in their care.
The services hospice provides are often really helpful to people with dementia and their families. In the last month of their lives, people with dementia in hospice care receive what their loved ones feel is better care, and experience less sadness or anxiety, compared with those not enrolled in hospice.
So while the care patients and families receive once they’re in hospice is helpful, it comes much later than it would need to if it were to really alleviate the immense caregiving burden that often comes with dementia.
Here’s what would better serve people with dementia and their families
Congress created Medicare’s hospice benefit in 1982. Since then, medical science has gotten better at preventing or treating a variety of diseases that commonly cause death in older adults, including cancer, heart disease, and lung disease. That means people are living longer — which means more of them are getting old enough to get dementia. If current population trends persist, more than 9 million Americans will have dementia by 2030, and 12 million by 2040.
Those people and their caregivers are going to need a lot of support, said Larry Atkins, chief policy officer at the National Partnership for Healthcare and Hospice Innovation. Unless people are insured by Medicaid, or have paid for long-term care insurance, they don’t have coverage for long-term care, he said.
Because it offers such supportive, wraparound care that provides for both the patient and the family, “hospice is the ideal care model,” said Atkins. But its requirement that eligibility hinge on a six-month prognosis means it’s unavailable to many of the people who would most benefit from it — including people with dementia.
Instead of relying on prognosis, said Atkins, hospice eligibility should depend on how sick a person is, how much help they need with daily activities, and how vulnerable they are to disease or death.
One way the US could make hospice’s benefits more available to people with dementia is by providing them under an expanded and more generously covered version of palliative care services — what Ben Marcantonio, NHPCO’s CEO, calls “community-based palliative care.” In this scenario, people would be able to access all of the good things hospice provides at whatever point their disease becomes burdensome to themselves and their families.
The Community-Based Palliative Care Act, a bipartisan bill introduced earlier this year, aims to make more of the services typical of hospice available to people who are still receiving curative treatment.
It’s worth noting that the US has tried this model, and it works: Several years ago, a handful of sites in the US trialed the Medicare Care Choices model, which allowed people to get hospice services while also receiving curative treatment, and it worked great — there was still plenty of cost savings, and high family and patient satisfaction.
Meanwhile, families can do some things to maximize the likelihood that the existing hospice benefit better serves them in the event of life-threatening illness, said Farrand. “Don’t be afraid of having conversations with your loved ones about what their wishes, goals, and values are as it pertains to their illness,” or how they’d want to live their lives if they were diagnosed with a serious illness.
And if they’re in the midst of a serious illness, they should ask for a palliative care consult, said Marcantonio. People sometimes misunderstand palliative care as “giving up,” said Farrand, but both palliative care and hospice involve “aggressively ensuring that your quality of life is what you want it to be — that you can live the best you can, even while living with a serious illness,” she said.
“If anything, it’s the absolute opposite of the idea of giving up.”
— Poland finds a new way to celebrate life – and death
Mourner Malgorzata (right) thanks celebrant Emilia Mandes for a perfect funeral: ‘Maybe I’ll go on such a journey myself …’
More and more Poles are turning away from traditional funeral rites. But what can replace them? Enter the Institute for the Good Death, grief doulas, ‘death cafes’ and music by Whitney Houston
By Katarzyna Piasecka
“Then, feeling really sorry for himself, he exclaimed: ‘There is fucking nobody to help me,’” reads Emilia Mandes, and the crowd bursts into laughter. They look at each other, nodding – this story has already become a family legend. But this is not an anecdote about a drunk uncle at a wedding. I am at a funeral: a special ceremony to say goodbye to Jan Ledwoń, who died in October at the age of 74.
Despite taking place in Elbląg, a medium-sized city in the north of Poland, it doesn’t feel like a typical Polish funeral. Instead of wreaths, people have made donations to a local animal shelter; instead of dirges, Leonard Cohen’s Tonight Will Be Fine is playing; and instead of a formally robed and solemn priest, there is Mandes, a professional celebrant, dressed modestly in black, and hugging the family and friends.
We are in a humble chapel next to the cemetery, with about 30 mourners, including Ledwoń’s daughter Kasia, who reached out to Mandes and organised most of the funeral. The chapel has allowed only half an hour for this farewell, but it is enough time for Mandes to deliver an emotional and moving speech about Ledwoń. As well as honouring his coarse language and crisp sense of humour, it reveals things that his friends weren’t aware of – that his parents wanted him to become a priest, for instance. Or that, when his father died, he promised his mother that he would replace him.
Such a ceremony is still a rarity in Poland, a predominantly Catholic country, in which the church has monopolised the celebration of most rites of passage. Although fewer and fewer Poles participate in religious rituals, they are still reluctant to give up traditional church ceremonies such as funerals or children’s baptisms. But recent years have brought changes: the Catholic church is in crisis and many Poles are turning to non-religious forms of spirituality, and as in other countries, there is now a growing “death positive” movement.
“The first ceremony I officiated at was the funeral of my husband. He died by suicide,” says Mandes, 47. “I wanted to respect his wish, in his final letter to me, to disappear unnoticed and avoid the ‘church circus’. Moreover, both of us left the institution a long time ago and our children are not connected with the church either.”
Mourners escort Jan Ledwoń’s ashes to the grave in Elbląg, northern Poland.
Mandes explains that her husband had depression, which he refused to acknowledge. It eroded their marriage and she decided to move on. “And then he decided to move on, as well,” she says. Two weeks spent with her husband in hospital in a coma gave Mandes time to think about how to organise his funeral. It was winter 2021, in the middle of the Covid lockdowns, so she had to negotiate limitations. But the main question was, if not a priest, then who would officiate at the ceremony? “I Googled Polish secular celebrants and knew my husband would haunt me if I hired one of them. They were more like celebrities than celebrants,” she says. “So, I decided to do it myself.”
A former audiobook reader with some acting experience, she harnessed her writing skills to concoct a unique speech for her husband, and her acting skills to deliver it. She even used the occasion to raise awareness about depression. “Afterwards, people commented that they hadn’t realised a funeral could be so beautiful, so personal. Some time later, a friend told me that being a celebrant could be a profession and this is how I got to know the Institute of the Good Death,” she recalls.
Anja Franczak, 39, founded the Institute of the Good Death in 2020, after losing a child in 2015 and realising that society offered few tools to cope with the grief. She then discovered the roles of grief doula, end-of-life doula and celebrant, and trained in all three in Germany. “Doula” comes from the Greek word for “a woman who serves”, and is popularly associated with birth doulas, who help mothers navigate the beginnings of life. But the need for assistance with end-of-life matters has become more and more salient.
A grief doula is a non-medical professional who supports individuals or families experiencing loss. They help them to come to terms with death, navigate emotions arising from grief, and deal with practical issues, such as fulfilling the deceased person’s will. An end-of-life doula, in turn, guides a dying person through the process of passing and supports those important to them. Like a grief doula, they also help people come to terms with death, and deal with administrative issues such as planning a funeral. They also help communities recognise death as a natural and important part of life. A celebrant complements the doulas, supporting mourners and organising a farewell ceremony that honours the departed person.
End-of-life doulas Katarzyna Boni, Anja Franczak and Magdalena Siwecka (left to right), about to start a workshop on the circle of grief.
While training, Franczak started sharing the experience on her blog and received a lot of reactions from people who were fascinated by this new, fear-free approach to dying. Death is a taboo subject in Poland, as it is in many countries. According to research, 33% of Poles don’t think about it at all, and 27% very rarely.
“I don’t avoid death: on the contrary, I seek contact with it. My perspective on life has changed,” Franczak wrote on her blog. “I want to talk about life with the knowledge that we’re all going to die. I believe that this awareness offers us a chance to live an intense life in line with our values, to open up to a deep experience of being human and to have relationships full of respect, acceptance and love.”
Together with like-minded people she met along the way, Franczak created a grassroots collective that morphed into the Institute of the Good Death. Today, it has more than 100 members, including professionals from the funeral industry, experts in medicine and palliative care, psychologists, journalists, scientists and artists. They organise courses, lectures, meetings and events such as “death cafes”, informal open meetings during which people can talk about loss and grief.
Their aim is to foster conversation and education about end of life, death and grief in a sensitive and supportive way. The institute also aspires to transform the culture from one in which death is absent or censored into one that draws from transience for our benefit, to enrich and enliven us. “We want to empower people to keep each other company in life and in death,” says Franzcak. “To raise awareness that we do not necessarily have to outsource all things concerning dying to institutions. We can deal with many things ourselves.”
The institute does not oppose the church or tradition, she stresses: “Many Poles value these religious, Catholic rites. We are open to collaboration with priests.”
One notable aspect of the institute is that it attracts mainly women; few men have participated in courses or events. “Maybe it’s because, for some reason, topics of life and death, childbirth and dying are closer to women,” says Franczak. Mandes suggests it might also be down to a difference in socialisation between men and women, “and the fact that what we do at the institute is perceived as care work, historically associated with women”.
Emilia Mandes conducts the humanist funeral ceremony of Jan Ledwoń.
Back in Elbląg, after the ceremony, Mandes invites mourners to the cemetery, where Ledwoń’s ashes will be returned to the soil. “He chose the forest as a place to say goodbye to this world. It leaves us in pain. If you feel that you want to tell him something, recall some memory, thank him for something, get angry about something, forgive him for something, you may express it with a metaphorical letter in the form of an autumn leaf,” she says.
As orange and red leaves fall on to Ledwoń’s grave, Mandes plays one of his favourite songs, Whitney Houston’s I Will Always Love You. This is the saddest moment of the funeral and Ledwoń’s widow, Magda, bursts into tears, hugging her husband’s photo in her arms. “You may now get closer to the family and hug them,” encourages Mandes, and the crowd clings together, forming a swinging mass.
“It is one of these rare experiences that really unite people,” Mandes says later. “It’s incredible how we are able to bond when we stand together in the face of death. It is above all divisions, all polarisation.”
A few days earlier, on 1 November, it was All Souls’ Day, a day when Poles do commune with the dead. On this day, Polish cities are typically deserted, but the cemeteries are bursting with life. Trains and motorways all over the country fill up with those travelling to visit the graves of the departed, and necropolises are covered in flowers and flickering candles. It is a time reserved for family and friends, and for remembering those who have died.
The Wind Phone Booth, where mourners can ‘communicate’ with those who have died.
As dusk falls, Warsaw’s historic Powązki cemetery becomes as busy as an airport. People who have come to visit graves mingle with those collecting money for charity, and vendors of candles and chrysanthemums. The place is dotted with booths housing priests selling commemorative masses.
But Mandes is not there. “I’m not going to the cemetery today,” she told me. “I don’t like crowds and I want to show my children that a connection with the dead is not limited to one day in the year.” Instead, across the city from Powązki cemetery, in the Osiedle Jazdów – a cultural commune housed in tiny houses in the centre of Warsaw – she is preparing an “open grief ritual” organised by the institute. This small ceremony is aimed at helping people honour and remember the deceased and engage in the process of letting go. Wading through autumn leaves in a small public square, Mandes and two other celebrants place lit candles in various corners and set up a microphone. A dozen participants observe them curiously. Some of them use the Wind Phone Booth, an imitation phone box installed by the institute in May 2022, where mourners can “communicate” with those who have died (the line is not connected to anything).
“I will give each of you a ribbon. It will be your bridge to your departed person and will let you connect with them,” says one of the celebrants, and divides the group into small circles. After a moment of awkward silence, each of the circles starts resounding with words, and soon with sobbing. “I wanted to thank you for being such a great auntie …”, “I wanted to say sorry that you couldn’t die in your beloved flat …” As the stream of words intensifies, I cannot believe that these people are able to show such vulnerability despite being complete strangers.
Mistress of ceremony Dominika Gauza offers blue ribbons as a symbol of connecting with a loved one who has passed away.
“I came here exactly for that,” says Monika, 44. “I am not ashamed – I want to cry among strangers.” She explains that she knew about the ritual from social media. “It is a relief to discuss emotions concerning death and grief that in Poland have been suppressed for years,” she adds.
The ritual led by Mandes and her fellow celebrants is vaguely reminiscent of the pre-Christian Slavic rite of Dziady (Forefathers’ Eve). This “communion of the living with the dead” involved gathering in houses to feed wandering souls with honey, barley, eggs and vodka. It was an occasion to share grief with the living and talk to the dead.
At the end of Ledwoń’s funeral, as his sister-in-law Marzena and her husband Jerzy say their goodbyes, I ask them what they thought of the ceremony. “I loved it,” says Jerzy. “I’m enrolling my name in Emilia’s agenda.”
“Not so fast,” says Marzena. “You still have a couple of dozen years to live.”
I had no idea how passionate people could get about the fate of a paid-for house.
To catch you up, my husband and I are updating our estate plan. In the process, we learned that our three children did not want to hold onto our mortgage-free home after we’re gone. Our eldest daughter, who will be handling our affairs, persuaded us that the best plan would be to sell it and split the proceeds.
Thousands of readers weighed in on last week’s column, “Our kids don’t want our paid-off house — or our ashes.” It prompted me to hold a live chat on the topic of inheritance. Here’s a recap of the most universal questions, which includes answers to questions I couldn’t get to during the live chat.
It’s a good time to have your own discussion about the things you’ll leave behind. And if you don’t have a will, get one. Now.
Q: How do I find someone trustworthy to do my will?
A: Ask friends and family. And if that doesn’t work, contact the local bar association in your area.
Q: What do you do if you don’t have children? I’m worried about honesty and reliability.
A: I get this very question from singles all the time. And it’s a hard one, with no right answer, to be honest.
An estate attorney can be the executor of your will, but many I’ve interviewed won’t because it’s a huge responsibility and one that might not be fulfilled for a long time.
For example, what if you set this up with an attorney or firm, and the attorney retires or the firm dissolves? Often, the attorney who retires will pass on cases to a new firm.
You can also hire a financial planner to handle your affairs. But you can run into the same issues with this type of professional.
I suggest you develop deep connections with trustworthy friends and/or extended family. Because frankly, somebody needs to watch the professional. (Just saying.) So maybe the person who handles your estate is your best friend. And if you both are getting older, it could be your best friend’s child. In fact, my husband and I hadnamed my best friend as the personal representative of our estate when our children were younger.We are now changing it to name our daughter, but you get my point.
And it’s worth noting that some folks have such strained relations with their kids that it makes more sense toname someone else to handle their affairs after they are gone.
Q: I volunteer at an animal shelter, which has made it clear I need to make plans for my pets. What is the best way to ensure good care for my two cats and my horse?
A: You can provide for a pet upon your death. When billionaireand convicted tax evader Leona Helmsley died in 2007, she famously left her Maltese a trust fund valued at $12 million. A judge later reduced it to $2 million.
You can’t leave your pet cash directly because animals are consideredproperty, according to Nolo.com, and “one piece of property cannot own another piece of property.”
But you can set up a pet trust that will allow you to set aside money and name a trustee to care for your animals. The American Society for the Prevention of Cruelty to Animals (aspca.org) has an explainer on what to consider when settingup the trust. On the website, search for “Pet trust primer.”
Another optionis finding a person or an organization willing to care for your pet. If you have the resources, you can leave money for care and feeding.
Q: We just moved to a retirement community, but my husband wants to keep our paid-off house so our kids can inherit it with a lower tax burden. I think it’s best to sell now. You?<
A: I would ask the children and an estate attorney. It’s true that the children would get a stepped-up basis, but you might want to sell and hold on to the money in case you need it for long-term-care expenses. Also, keeping the home means maintaining it. That could involve hiring a property management company and renting it out if your children don’t want the responsibility.
By the way, let me explain stepped-up basis tax provision, which involves capital gains. When you die and your heir or heirs inherit your home, they get it at its current market value or the stepped-up basis. This means your heirs can escape paying capital gains on the property.
Q: How much info should we share with an adult child with a few bad money habits? Our adult daughter has moved home to deal with some health issues and to try to get her career launched. She has said it would be helpful to “understand Mom and Dad’s financial situation” to know what kinds of assistance she can get from us. We want to help her, of course, but she has also demonstrated a willingness to treat us like an ATM. This is not a question of informing her so she can manage our finances after we die. (Her sister is going to get that info.)
A: Follow your instincts. I suspect she wants the information for selfish reasons. She does not need to know your business, especially since you have designated the other daughter to handle your affairs.
Most importantly, the daughter in question does not need to know because she hasn’t demonstrated a sufficient amount of financial responsibility.
— The idea that death and dying can be part of life, not handled by walled-off specialists in expensive facilities, has gained traction in recent years.
Attendees of a recent shrouding workshop practice on a volunteer, led by Pat Quigley, right, the supervisor of Laurel Hill funeral home.
In a high-ceilinged, brick-walled space in Northern Liberties where people often host weddings, a group of strangers gathered on a recent Sunday to prepare for death.
They had come to learn how to shroud, part of a growing “death-positive” movement in Philly that seeks to demystify and de-commercialize the end of life. Many had been drawn to the hands-on workshop by fliers posted around the city that read, in part, “Yes, you heard that right! ‘Shroud’ as in wrapping a dead body for burial.”
Hosted at the MAAS building, the free event promised a shrouding demonstration (”on a live human”). It also served as the first meeting of a nascent “deathcare volunteer group,” which has aims to help Philadelphians who cannot afford funeral costs prepare and bury their loved ones. The median cost of funeral followed by burial in the mid-Atlantic region was $8,093 in 2021, according to the National Funeral Directors Association — a hefty sum for many families.
Pat Quigley, center and funeral director at Laurel Hill cemetery, teaches attendees how to shroud a dead body at a recent workshop in Northern Liberties. Kim Schmucki, on the table, volunteered to be practiced on.
“I really want Philadelphia to be a death-positive hub on the East Coast,” said Isabel Knight, 29, the president of the National Home Funeral Alliance and the workshop’s organizer. In her vision, the grassroots group will wash and shroud the dead for free, and perhaps even transport bodies, in personal vehicles with burial permits, to cemeteries, Knight said.
Of actual burial or cremation, “That’s something that you’ve got to pay for, unfortunately,” she said.
The idea that death and dying can be part of life, not handled by walled-off specialists in expensive facilities, has gained traction in recent years. And the attendees at the shrouding workshop were not, on the whole, new to death — they included death doulas, a hospice music therapy worker, and a former palliative care doctor.
It was a practical meeting, but also something of a pep rally for people whose passion may not be the most popular at cocktail parties.
“I do a meditation where I visualize dying — and sometimes being cared for, and sometimes just being kind of abandoned on a cliff and decomposing,” said Natalia Stroika, 38, of South Philly, explaining to the group why she had come. “I got a lot of wisdom from that.”
Another attendee, a West Philly resident who goes by the name Ask Nicely, explained that he was in the process of growing flax in a burial ground in Upper Darby “so that I can learn to process it into fiber and then weave my own death shroud,” a comment that elicited an appreciative murmur from the crowd.
Many Jewish communities already have a volunteer burial society, or chevra kadisha, to ritually wash and prepare the dead for burial. Knight’s deathcare group will be for all religions, and particularly for those who cannot afford the high costs of the modern funeral.
Attendees of a free shrouding workshop practice wrapping a volunteer in a sheet.
Pat Quigley, 66, the supervisor of Laurel Hill funeral home and a member of the Reconstructionist Chevra Kadisha, or Jewish burial society, served as the shrouding instructor. She first reassured the group on two fronts: dead bodies do not immediately become too stiff to handle, and they do not instantly decompose.
Next was the practical matter of what to do. Everyone crowded around a pale green massage table at the front of the room; Kim Schmucki, 60, removed her shoes, revealing multicolored striped socks, and lay on the table, pretending to be dead. The group used a white linen-cotton shroud made by California company Kinkaraco, which Laurel Hill sells for roughly $900. Kinkaraco makes shrouds for a “green burial,” which means that everything about the body, the clothes, and the casket (if there is one) is biodegradable.
“Obviously we’re not going to suffocate Kim,” Quigley said, showing attendees how to roll her over and pull the shroud around her, but declining to pull it over her face. She offered a few “nifty little tricks” to keep eyes and mouths closed, advised attendees to support the head during the process, and showed the group how to tie the shroud tightly around the feet, waist, and upper body.
After the main demonstration, participants broke into smaller groups to try themselves. On the floor, a group carefully wrapped their volunteer corpse in a pale green sheet and rolled her back and forth, tied up with a bow.
“The whole death experience, like the whole birth experience, has become so medicalized and so sanitized,” said Quigley. “I think people just want something different.”
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