After a loved one dies, red tape adds to the grief

Bureaucratic delays and paperwork are frustrating, exhausting, emotionally crushing — and often unavoidable

by Allison Engel

In quick succession last spring, my family experienced three wrenching deaths: My brother-in-law died of a late-diagnosed cancer, my husband, Scott, died of a different late-diagnosed cancer and my mother died at age 100.

The last thing you want to deal with when you’re wrapped up in grief is red tape. It’s frustrating and exhausting and emotionally crushing. And yet it is unavoidable.

My family thought our financial affairs were organized. We had wills and beneficiaries were listed there and on all financial accounts. Many people don’t do that, which makes the post-death red tape so much worse. But even so, we’ve endured months of maddening experiences with banks, insurance companies, employers and the Social Security Administration — among others.

Here are a few of the most aggravating roadblocks:

Face recognition, voice recognition and fingerprint recognition speed up access when someone’s alive but present tremendous barriers for survivors trying to wind down accounts. When I sign in to my late husband Scott’s password manager and investment accounts, access codes are sent to his phone. Despite many tries, I find I cannot change that phone number. This means keeping Scott’s phone active, a needless expense.

Credit card mix-ups

If you think you and your spouse share a credit card, because each of you has a card with your name on it and the same account number, guess again. That card belongs only to the person who applied for the account. Credit card companies are alerted to a death quickly by the Social Security Administration, and will freeze a survivor’s ability to view the account online. Providing a paper statement seems logical, but our bank’s representative told me, “Once you’ve opted to get online statements, our policy is you cannot go back to paper statements.” It took six full months of begging to the bank’s “Deceased Management Team” (actual name) to be mailed statements for the months following Scott’s death. And it wasn’t easy to cancel some recurring charges.

At Best Buy, a customer service representative said I had to take a death certificate to a Best Buy store to cancel a Geek Squad subscription. I considered dressing in black with a veil but went dressed normally, with death certificate in hand, and got the refund.

Personal visits are discouraged

When your frustration level rises after marathon sessions on hold, you might be tempted to visit the bank or insurance office in person. Don’t. At one bank, an employee would not make an address change when I arrived, and referred me to the financial institution’s website.

I visited a Social Security office in person twice to try to change the address where Scott’s post-death Medicare bills were sent since I had moved — and was now paying those bills. An address change could not be done in person after a death, I was told; use his online account. But it is the one account not in his password manager and it has a unique username I don’t know. I hope his medical bills, arriving at a snail’s pace, all come before the Postal Service stops forwarding his mail to our old address.

Documentation overload

I bought multiple copies of Scott’s death certificate, but I was unprepared for how companies string out requests for other documents. Scott’s longtime employer clawed back his monthly pension without notification, then refused to tell me what documents it required other than the death certificate. The company needed to investigate Scott’s pension wishes, it said.

Scott had had only two choices: a higher pension that ended with his death or a lower pension that continued to me. From the dollar amount of the checks, it was obvious he had chosen the lower pension.

Two weeks after receiving the death certificate, the company rep asked for Scott’s birth certificate. Two weeks after that, our marriage license. Two weeks after that, she requested the original Social Security card I applied for at age 16. A friend, a retired district judge, pointed out that companies get only 30 days to resolve such issues. I called and told the representative that this limit had been exceeded. Amazingly, she called the next day and said everything was resolved.

Still, she insisted on sending the three months of withheld pension payments to my old address, even though I had provided proof of my new address weeks earlier.

Lengthy waits

Expedia required a death certificate and 30 days to quit sending Scott emails. I couldn’t just unsubscribe him because he once had been booked on a flight through Expedia, the online travel agency’s fine print disclosed.

At our bank, I had to make one appointment with an official to delete Scott’s name from our joint checking and savings accounts, and another to change beneficiaries on that account. I was told to plan 90 minutes for the first visit. (It took two hours.)

Most of the time was spent sitting in the banker’s cubicle, waiting while he tried to get the bank’s estate management group to answer the phone. He waited on hold for 43 minutes while I sat there. Deleting Scott’s name took a few minutes. The banker hung up without asking about the credit card linked to that account and had to call back. We waited another 18 minutes for the phone to be answered.

My return appointment for the beneficiaries took another hour sitting in that cubicle.

Many of these red-tape problems are made more galling as they often require phone calls with endless waits on hold. When representatives finally connect, they invariably start by the rote and insincere “sorry for your loss” scripts.

Grief is hard enough. Dealing with tech barriers and nonsensical policies make the months after a death into a second career of aggravating phone calls, emails and visits.

How to reduce these irritations

To minimize these frustrations, here are a few suggestions learned the hard way:

1. Keep an updated list of recurring credit card charges, organized by each card.

2. Make sure you have a credit card you applied for in your name.

3. Get a password manager to hold all your user names and passwords and make sure your executor knows your master password. If you have some accounts that are not included in a password manager, make sure your executor knows what they are (and also remember to update any list in case you change them periodically).

4. Buy at least six copies of the death certificate. Some companies allow you to email copies, but others require the physical certificate.

5. Do an inventory now and make sure you have birth and marriage certificates, adoption or divorce documents and Social Security cards. After many decades of marriage and multiple moves, some of these documents may have gotten lost. It can take weeks to get copies from the various agencies.

6. Don’t put the will or other important documents in a safe-deposit box. Getting access to it can be a lengthy process, particularly if your loved one misplaced the key. Even with a key, if family members suddenly need to get a loved one’s medical power of attorney outside of bank hours, for example, they are out of luck.

Complete Article HERE!

When the patient is family

— Perspectives on caring for loved ones during end-of-life

By Lora Parisien

Every day, hospice workers bring comfort to dying patients so that they may die with dignity and on their own terms. They extend grace and compassion to all, regardless of who they are or where they come from. This is the humble work of a Hospice of Michigan employee. This is the promise they keep: Every Person. Every Time.

But what happens when the hospice worker’s patient is a family member? Does having a hospice background make it easier to navigate the challenges of caring for a terminally ill patient when that patient is a loved one?

When she was just 10 years old, curiosity drew Sarah Beegen to the room in her family’s home where hospice staff were attending to her dying grandmother. “I wanted to know. I needed to know what was going on in there,” said Beegen. This same inquisitiveness led her to a career with Hospice of Michigan, where for the past 17 years, she worked her way from certified nurse assistant to her current role as manager of the not-for-profit’s referral center.

If anyone was fully prepared to care for a dying family member or insulated from the hardest aspects of death, certainly Beegen was. When her mother’s cancer became incurable, she “shut off my ‘hospice eyes’ and focused on other things. I didn’t want to see that mom was dying.”

The truth is, no amount of training or experience can prepare one for the death of a loved one — because dying is more than a medical event, it’s a deeply personal experience.

Hospice workers understand that both patients and their family members can struggle accepting life-limiting diagnoses. In 1969, Elizabeth Kubler Ross, a Swiss-American psychiatrist and pioneer in the worldwide hospice movement, identified five stages of grief. When faced with imminent death, denial, the first of the five stages, is a common reaction to change and loss. No amount of hospice training can derail feelings of grief. Denial is the defense against something that is impossible to accept.

“No matter how seasoned you are, you can never be prepared when the patient is your loved one,” says Beegen.

Tracey Pierce, director of marketing and communications for Hospice of Michigan, also found herself in unexpected territory when she reached out to her colleagues for help. In a matter of months, her mother- and father-in-law suffered falls, hospitalizations, and anxiety which led to a drastic decline in their health.

“It’s a different ballgame when you are on the other side. For as much as I thought I knew about hospice care, I realized how much I didn’t know. I’m grateful we had my work family to lean on. Hearing the stress in my voice, they calmly answered our questions and addressed our concerns with compassion and patience,” said Pierce.

That is the gift of hospice, a team of experts sweeps in and surrounds patients and families — and sometimes colleagues — with knowledge, skill, and compassion, providing wide-ranging physical, emotional, and spiritual support at a crucial time.

Beegen and Pierce both knew they needed help from the experts, the people she worked with every day. “If I learned one thing from my mother’s death, it’s not to be afraid to ask for help,” said Beegen.

“We always talk about providing care and dignity in hospice. It was evident in simple, nurturing acts, such as a hospice aide bathing my mother-in-law,” shares Pierce. That gave Pierce and her family the opportunity to focus on being present in all the precious moments they had left.

Redefining what was and shifting to what is now. Searching for meaning. Contending with change. Living day by day. Preparing for death. These are the hallmarks of coping with the terminal illness of a loved one. It is a highly personal experience, no matter who you are. Though it can be daunting, no one should face the end-of-life process alone.

Complete Article HERE!

Black Christian patients are less likely to receive their preferred end-of-life care.

— Researchers hope change that. 

by

Researchers from the University of Alabama at Birmingham published a paper in the Journal of Racial and Ethnic Health Disparities demonstrating the importance of respecting the deeply held beliefs of African American Christians to help provide equitable, goal-concordant end-of-life care to these patients.

There are two schools of thought among clinicians at end of life: aggressive care, which focuses on treating the illness or condition, and supportive care, which focuses on pain and symptom management.

In this publication, researchers demonstrated how the term aggressive care — used loosely by clinicians to describe care that can negatively impact quality of life for patients with serious illness — is often used to inappropriately label the preferences of African American patients.

“Our motivation through this article was to bring in not only the perspectives of African American Christians, but also to share the biblical and historical backdrop that can be instrumental in shaping their serious illness and end-of-life wishes,” said Shena Gazaway, Ph.D., assistant professor in the UAB School of Nursing and lead author of the study. “In collaboration with our wonderful medical colleagues, we wanted to acknowledge the origins of aggression and discuss how the labeling of care as aggressive with patients and their families can negatively impact care conversations.”

For patients with serious illness such as advanced cancer, dementia and terminal illnesses, the term aggressive care is used to describe courses of treatment that could potentially cause increased physical distress and psychological stress and a decreased likelihood of experiencing a “good death.” The Institute of Medicine defines a good death as “one that is free from avoidable death and suffering for patients, families and caregivers in general accordance with the patients’ and families’ wishes.”

“The data is clear — a larger proportion of African American families reported that their loved one did not receive care that is in accord with what they requested in the final days of their life,” said Ronit Elk, Ph.D., associate director for the UAB Center for Palliative and Supportive Care, and professor in the UAB Division of Geriatrics, Gerontology and Palliative Care and co-author. “We hope this article provides a careful explanation of why these values are so important to the African American Christian community and will strike a chord in many clinicians about the importance of respecting these values and not dismissing the beliefs that these patients and their families about hope and the miracles of God.”

In this article, researchers discuss how many Black Christian adults share a belief in miracles that shapes their end-of-life care decisions. The article states that this belief in miracles combined with an overall distrust in the health care system — due to a history of medical experimentation and centuries of health care disparities — have led many African Americans to depend on their belief in God’s healing power to perform miracles and heal family members who are seriously ill.

The UAB Center for Palliative and Supportive Care offers the African American Communities Speak program to clinicians. This skills-based training incorporates videos created by the African American community to train clinicians on the community’s cultural values, lived experiences and recommendations for care. Self-reflection and active learning techniques provide participants the foundation needed for changed behavior and improved communication with patients and caregivers.

This trust in God, belief in miracles and distrust of clinicians may lead to a seriously ill African American Christian patient to request life-sustaining medical interventions even when recommendations call for supportive care. When facing terminal illness, this hope in miracles often influences the patient’s medical decisions and fuels a desire for life-sustaining interventions. The paper states that these decisions are also rooted in a belief that God ultimately decides the outcome of life, not the health care system. 

Researchers say the key to goal-concordant care is for clinicians to allow these patients to process clinical information through their preferred spiritual lens and to allow them time to have critical conversations with those in their network.

“We are hopeful that clinicians will read this article and take away the importance of religious and cultural belief systems in this particular patient population,” said Moneka Thompson, staff chaplain in the Department of Pastoral Care and co-author. “Specifically, we want everyone to understand how the values and beliefs of this particular population may impact their end-of-life preferences and decision-making. This article is the combined effort of five very different women from quite different backgrounds.  Our collective goal was to create a think-piece towards movement of health care for this population in a meaningful and more equitable direction. At the end of the day, we want to support health care equity as much as possible.”

Thompson says that there are a few steps clinicians can take to help ensure they are providing goal-concordant care to their patients.

“First, we encourage clinicians to be aware of their own biases towards this patient population that may fuel incongruent care,” Thompson said. “Second, we hope that clinicians will utilize communication practices that encourage cultural sensitivity, humility and curiosity. Finally, we want clinicians to be fully present to the variety of religious and cultural beliefs that this population will present without feeling the need to obtain this value system for themselves or compromise their own.”

Complete Article HERE!

Deadnaming, misgendering and more

— Chicago’s trans and nonbinary community grapples with end-of-life complexities

Elias Renaud, seen outside St. James Cathedral in Chicago on Nov. 12, is a transgender male and has drawn up a living will.

By Adriana Pérez

When COVID-19 first hit Chicago in 2020, essential worker Elias Renaud texted his sister and a good friend from the bus on his way home from his job at a grocery store.

“If something happens to me, this is where I want things to go, this is what I want done,” Renaud, who uses the pronouns he/him, remembers telling them.

The 44-year-old transgender man, from Edgewater, drew up a living will with the cautious hope that when he dies, his body would be treated with dignity.

“I think by the time I die, there will be a lot of people doing death work that will have had experience with trans bodies or will be trans people themselves, or nonbinary people themselves,” he said.

For trans people like Renaud, as well as for nonbinary people, life comes with its own set of difficulties. But so does death.

Elias Renaud, a transgender male from Chicago's Edgewater neighborhood, has drawn up a living will.
Elias Renaud, a transgender male from Chicago’s Edgewater neighborhood, has drawn up a living will.

As the death care industry grapples with changing cultural attitudes and questions on how to respectfully lay to rest those who identify as trans or nonbinary, a South Side-based LGBTQ community center called the Brave Space Alliance is set to launch the final portion of its Dignity Project this month, completing an umbrella of services that aim “mainly for violence prevention, and to perpetuate dignity in our communities,” said interim CEO Jae Rice, whose pronouns are he/they.

The project includes $400 microgrants for trans people in Chicagoland, a name change clinic and a funeral fund that will give up to $6,000 to cover funeral and burial costs for trans people. The funeral fund is the first of its kind in the country, they say. And beginning this month, Rice said, the Dignity Project will be providing living wills for trans folks in the area as well.

“So at the time of their death, they will have something that’s on record to show how they want to be buried, how they want to be presented, what they want to be buried in, their name that they want to be called — all that stuff,” Rice said.

Multiple conversations with experts unearthed how end-of-life issues become more pronounced for trans and nonbinary people, including deadnaming, misgendering, gendered death care and legal documentation, and how they play out in various institutional settings: funeral homes, the medical examiner’s office, the media and more.

“Deadnaming refers to when you refer to a trans or a nonbinary person by a name that they no longer go by. Often this is their birth name, or it may be their legal name. And this happens either on purpose or accidentally — intention sometimes doesn’t matter,” said Aster Gilbert, manager of training and the public education institute at Center on Halsted, a community center that advocates for LGBTQ health and well-being.

Misgendering similarly refers to when a person is referred to as a gender that they do not identify as. A trans or nonbinary person’s lived name and gender might not match their legal name and gender markers because of what constitute expensive and time-consuming legal transitions, and the anxiety and emotional distress that publishing one’s name under a newspaper of record may cause.

“If there’s a person who was found (dead) and you only have their legal documentation, that may not reflect who that individual actually is, because we’re all required to have legal state and federal documentation that may not have anything to do with our lived realities,” said Gilbert, whose pronouns are she/they.

In a statement to the Tribune, the Cook County medical examiner’s office said the office “treats every decedent in our care with dignity and respect. The loss of a loved one is tragic in itself. When a transgender person dies without having updated official records, their loved ones can face additional challenges that make the loss even more painful.”

That being said, the medical examiner’s office follows the direction of the Illinois Department of Public Health. “The decedent’s gender is reported on their death record or death certificate as the person was officially recorded while alive,” the statement continued. “So, if she was recorded, for example, as female on official documents (i.e. birth record, driver’s license) then that is how she must be recorded at death … We are very sensitive to the concerns of transgender persons and their loved ones, and do our best to respect their wishes to the extent that the law allows us to do so.”

In 2021, the Illinois Vital Records Division of the state health department added a new option to its system: an “X” gender marker in death certificates, which prints as nonbinary.

But though the gender markers in passports and Illinois birth certificates also allow people to choose a gender-neutral option, according to Illinois Legal Aid Online, that is not yet the case with driver’s licenses. Although Gov. J.B. Pritzker approved a measure in 2019 to include nonbinary gender markers on driver’s licenses and state ID cards, the new option won’t be available until the secretary of state’s current technology vendor contract ends in 2024.

Rice said that Brave Space Alliance and Southsiders Organized for Unity and Liberation will work with the Cook County medical examiner’s office and funeral homes to make sure trans people are not misgendered or deadnamed during end-of-life care.

“That is something that our community doesn’t have the pleasure and privilege to think about, is after death care. We’re just trying to survive right now,” Rice said. “The launch of the Dignity Project is to instill dignity while you’re here. And after death as well.”

Death work is necessary, especially for the trans community, said Phoenix Kelley, a death doula based in Jackson, Michigan, whose pronouns are they/them.

“Many funeral directors will go with the family of origins’ wishes, which often means that a trans person is misgendered, deadnamed, dressed as the gender that they did not identify with during their viewing and listed like that in their obituary,” Kelley said. “So one of the things that my work is trying to do is to normalize thinking about what you want your death and after death to look like.”

Kim Sabella, the funeral director at Wolfersberger Funeral Home in O’Fallon, Illinois, near St. Louis, said she encountered a situation recently in which the parents referred to their child who had just died with she/her pronouns, whereas some of the deceased person’s friends and peers used they/them pronouns to refer to them. So, she had to take a step back and confirm what pronouns the decedent preferred in life.

“The bigger issue here is how we all, in our workplaces, need to be more sensitive and more aware. And so not be afraid to just sometimes simply ask the question,” Sabella said. “I think that we just have to stop making assumptions about everybody but especially people that are already disenfranchised … We just have to be kinder humans. And I just think that’s just more important than ever before. And especially when we encounter (others) in the midst of grief and loss.”

Kelley, the death doula, strongly recommends that trans and nonbinary people create an end-of-life care document, naming someone specific that has permission to make medical decisions, and to get that document signed and notarized so that it’s a legal document.

“Even before I started doing any training to be a death doula, I knew that preparing a will or some kind of document for your end-of-life is really important,” they said.

The Illinois Department of Public Health offers online resources to those looking to prepare an advance directive, designate a health care proxy or draw up a living will.

At the Center on Halsted, Len DeWilde of the Transmasculine Alliance Chicago does a workshop about the legal steps trans and nonbinary people can take to preserve their own identity in the event of death. This includes sharing information about the different forms and designations that can be filled out, “especially if your next of kin are either not aware of your gender identity, wishes, or you’re afraid that they would actively try to kind of undo it in your death,” said DeWilde, whose pronouns are he/him. The next workshop will likely be held in December or January, he said.

But for some, delving into these documents can be daunting.

“The main thing that I think about is how I’m treated now, versus how I’ll be treated once I pass on,” says Sydney Kamuda, a 25-year-old nonbinary artist. “My only hope is that I have people who are around after me who can advocate for me.”
“The main thing that I think about is how I’m treated now, versus how I’ll be treated once I pass on,” says Sydney Kamuda, a 25-year-old nonbinary artist. “My only hope is that I have people who are around after me who can advocate for me.”

“The conversations surrounding what I would like to happen once I’m gone have been happening for a while, but in terms of really putting that onto paper — I think that’s where a lot of the fear comes into it,” said Chicagoan Sydney Kamuda, a 25-year-old nonbinary artist whose pronouns are they/them. “It’s another fearful idea that you are entering into a space where, again, I’m going to have to explain my pronouns and why I look a certain way.”

One of the reasons death work is necessary, Kelley said, is because of the rates at which trans people — especially trans people of color — are killed.

“We have this sort of this community knowledge that it’s very possible for us to die and especially to die suddenly, but taking the time to make those preparations can be scary,” Kelley said. “Even for me, because it makes it feel more real.”

According to the Human Rights Campaign, at least 32 transgender people have been fatally shot or killed violently in the United States in 2022 so far. In Chicago, at least two transgender women have been killed, including Martasia Richmond in June and Tatiana Labelle in March.

“We say ‘at least’ because too often these stories go unreported — or misreported,” the Human Rights Campaign notes on its website. “In previous years, the majority of these people were Black and Latinx transgender women.”

Since the Human Rights Campaign began tracking fatal violence against trans people in 2013, it has recorded 12 deaths in Chicago, all of which have been Black transgender women.

Deadnaming and misgendering trans people, Rice said, translates into not having an accurate count of trans deaths and a consequent inability to fully understand the violence trans folks face — “because so many trans deaths are not labeled trans deaths.”

“But when we don’t know that these people who are dying are actually trans folks, then how are we going to get toward any sort of actual liberation?” Rice asked.

Nonbinary artist Kamuda, who was 16 years old when their father died of complications from lung cancer, said this close experience with death has made them think about their own mortality. Death, they said, is one of the singular unifying factors in everybody’s lives.

“The main thing that I think about is how I’m treated now, versus how I’ll be treated once I pass on,” Kamuda said. “My only hope is that I have people who are around after me who can advocate for me.”

Complete Article HERE!

I went from being a labor-and-delivery nurse to a death doula.

I help people who want to die on their own terms by refusing food and water.

People who voluntarily stop eating and drinking tend to be terminally ill people whose doctors can’t predict how long they have left to live.

By

  • Nancy Simmers is a death doula whose clients decide to end their lives by refusing food and drink.
  • A former labor-and-delivery nurse, Simmers says the process of death is similar to birth.
  • This is Simmers’ story, as told to Jane Ridley.

This as-told-to essay is based on a conversation with Nancy Simmers. It has been edited for length and clarity.

Most people are taken aback when they hear that I’m a death doula. They’re shocked when I say that I work exclusively with people who want to die on their own terms, by voluntarily stopping eating and drinking.

The method, known as VSED, might seem terrible at first. But it lets you take control of the circumstances of your death.

Most people support the idea of the power of the individual. They understand someone who says, “It’s my life, let me get on with it.” But they feel uncomfortable when someone says the same thing about their death.

I used to be a labor-and-delivery nurse. Over the years, I’ve come to see death and birth as physical, emotional, and spiritual thresholds. They are similar processes. They involve uncertainty, fear of the unknown, and transformation. Both require courage, surrender, release, compassion, and support from others.

Some people reach a point in their life and decide they’re done

The US law largely doesn’t prevent people from choosing to end their life by VSED, which doesn’t require permission from a physician.

Many people who opt for VSED have a terminal illness. But it’s almost impossible to get a firm prognosis for neurological diseases such as ALS and Parkinson’s. People can suffer for years as their bodies and mental capacities deteriorate. Some people reach a certain point and say, “I’m done.” A person in their 90s who has lost their vision, hearing, and bladder control may feel that their quality of life is nil.

A headshot of death doula Nancy Simmers
Nancy Simmers, a death doula, helps people who opt to stop eating and drinking, a method of death known as VSED.

If a doctor won’t certify that you have less than six months to live, you are not eligible for “death with dignity.” The laws — which apply in eight states and Washington, DC — allow people to take lethal drugs under medical supervision.

VSED is another version of death with dignity. Each VSED death I’ve attended has been different, but not undignified. Most of my clients die in their own homes surrounded by their loved ones. It’s a gift. It wasn’t VSED, but when my father was dying of cancer in 1991, my sons — 8 and 5 — were in and out of their grandpa’s room. It doesn’t do anybody any favors to be frightened of death.

VSED requires a lot of planning

A lot of people know nothing — or very little —about VSED. There are some scary myths. People think that it involves great suffering and that it goes on indefinitely. They assume it will affect your life-insurance policy.

VSED is not to be considered lightly. It needs lots of careful planning. It’s reversible up to a point, and there are medications to ease the transition. Family members usually know about the decision and agree that it’s the choice of the individual concerned. Life insurance is mostly straightforward because the doctor does not write “suicide” as the cause of death; they note the person’s underlying condition, such as cancer.

An altar full of photos that pays tribute to the person dying
Simmers set up an altar to celebrate the life of a woman who chose VSED.

People considering VSED in my home county of Whatcom, Washington, find me via word of mouth or online. I’ll arrange to meet with them and their family. My partner, Andrea Fenwick, and I give frank and honest answers. There’s no sugarcoating. We’re part of the nonprofit VSED Resources Northwest, though we advise people across the world.

We can understand why families question their loved one’s decisions. It depends on the case, but we might tell them: “This is your beloved person, and your beloved person is suffering. It’s their body and their choice.”

We’ll tell the family, “Although you will suffer because you’ll miss this person, it’s their choice to end their suffering — how can you be supportive of this choice?”

Once things are decided, we mark the start date with a little ceremony. We celebrate the person and their life and their choice. We thank them and shower them with love and gratitude.

Many families make a small altar. It’s the focal point of their room. They’ll decorate it with family photos and precious items that remind the loved one and their visitors about their interests and skills. It’s a reflection of a life well lived.

I like to light a candle, symbolizing the person as a spirit. After the death, it becomes part of a leave-taking ceremony and is blown out.

VSED is a serious commitment, but it doesn’t have to be a solemn affair. My last client lightened things up with a touch of humor. We’d ask how she was feeling during her first few days of VSED — she joked about wanting a cold Pepsi.

I tell my folks that dying has been around for millions of years. Your body knows what to do. Just trust your body. Our bodies know how to breathe. Our bodies know how to process food. Our bodies know how to birth. They know how to die.

It can be hard for families to watch as their loved one becomes confused because of dehydration

VSED takes an average of nine to 11 days. The person is usually up and about for the first few days. But the middle stage, which can last almost a week, is the marathon.

They’ll need medication — a mixture of morphine and anxiety drugs — to help them through the confusion and delirium caused by dehydration. It’s hard for the family to watch. A designated person will step in if the loved one calls for food or water.

The final stage lasts about three days. Dehydration makes people sleepy. It’s reassuring for everyone because you lose consciousness when your body goes into crisis mode.

The lack of fluids affects your kidneys and liver. The excess bilirubin makes the skin look yellow. The feet and the fingertips turn blue. Breathing becomes shallow or agonal.

Friends and relatives gather at the bedside to say goodbye. It reminds me of families coming together to welcome a newborn. We want the very best for the baby; we support them when their journey in life begins. People deserve the same support when the journey ends.

Complete Article HERE!

The Death Predictor

— A Helpful New Tool or an Ethical Morass?

by Karen Weintraub

Whenever Eric Karl Oermann has to tell a patient about a terrible prognosis, their first question is always: “how long do I have?” Oermann would like to offer a precise answer, to provide some certainty and help guide treatment. But although he’s one of the country’s foremost experts in medical artificial intelligence, Oermann is still dependent on a computer algorithm that’s often wrong.

Doctors are notoriously terrible at guessing how long their patients will live.

Artificial intelligence, now often called deep learning or neural networks, has radically transformed language and image processing. It’s allowed computers to play chess better than the world’s grand masters and outwit the best Jeopardy players. But it still can’t precisely tell a doctor how long a patient has left – or how to help that person live longer.

Someday, researchers predict, computers will be able to watch a video of a patient to determine their health status. Doctors will no longer have to spend hours inputting data into medical records. And computers will do a better job than specialists at identifying tiny tumors, impending crises, and, yes, figuring out how long the patient has to live. Oermann, a neurosurgeon at Mount Sinai, says all that technology will allow doctors to spend more time doing what they do best: talking with their patients. “I want to see more deep learning and computers in a clinical setting,” he says, “so there can be more human interaction.” But those days are still at least three to five years off, Oermann and other researchers say.

Doctors are notoriously terrible at guessing how long their patients will live, says Nigam Shah, an associate professor at Stanford University and assistant director of the school’s Center for Biomedical Informatics Research. Doctors don’t want to believe that their patient – whom they’ve come to like – will die. “Doctors over-estimate survival many-fold,” Shah says. “How do you go into work, in say, oncology, and not be delusionally optimistic? You have to be.”

But patients near the end of life will get better treatment – and even live longer – if they are overseen by hospice or palliative care, research shows. So, instead of relying on human bias to select those whose lives are nearing their end, Shah and his colleagues showed that they could use a deep learning algorithm based on medical records to flag incoming patients with a life expectancy of three months to a year. They use that data to indicate who might need palliative care. Then, the palliative care team can reach out to treating physicians proactively, instead of relying on their referrals or taking the time to read extensive medical charts.

But, although the system works well, Shah isn’t yet sure if such indicators actually get the appropriate patients into palliative care. He’s recently partnered with a palliative care doctor to run a gold-standard clinical trial to test whether patients who are flagged by this algorithm are indeed a better match for palliative care.

“What is effective from a health system perspective might not be effective from a treating physician’s perspective and might not be effective from the patient’s perspective,” Shah notes. “I don’t have a good way to guess everybody’s reaction without actually studying it.” Whether palliative care is appropriate, for instance, depends on more than just the patient’s health status. “If the patient’s not ready, the family’s not ready and the doctor’s not ready, then you’re just banging your head against the wall,” Shah says. “Given limited capacity, it’s a waste of resources” to put that person in palliative care.

The algorithm isn’t perfect, but “on balance, it leads to better decisions more often.”

Alexander Smith and Sei Lee, both palliative care doctors, work together at the University of California, San Francisco, to develop predictions for patients who come to the hospital with a complicated prognosis or a history of decline. Their algorithm, they say, helps decide if this patient’s problems – which might include diabetes, heart disease, a slow-growing cancer, and memory issues – make them eligible for hospice. The algorithm isn’t perfect, they both agree, but “on balance, it leads to better decisions more often,” Smith says.

Bethany Percha, an assistant professor at Mount Sinai, says that an algorithm may tell doctors that their patient is trending downward, but it doesn’t do anything to change that trajectory. “Even if you can predict something, what can you do about it?” Algorithms may be able to offer treatment suggestions – but not what specific actions will alter a patient’s future, says Percha, also the chief technology officer of Precise Health Enterprise, a product development group within Mount Sinai. And the algorithms remain challenging to develop. Electronic medical records may be great at her hospital, but if the patient dies at a different one, her system won’t know. If she wants to be certain a patient has died, she has to merge social security records of death with her system’s medical records – a time-consuming and cumbersome process.

An algorithm that learns from biased data will be biased, Shah says. Patients who are poor or African American historically have had worse health outcomes. If researchers train an algorithm on data that includes those biases, they get baked into the algorithms, which can then lead to a self-fulfilling prophesy. Smith and Lee say they’ve taken race out of their algorithms to avoid this bias.

Age is even trickier. There’s no question that someone’s risk of illness and death goes up with age. But an 85-year-old who breaks a hip running a marathon should probably be treated very differently than an 85-year-old who breaks a hip trying to get out of a chair in a dementia care unit. That’s why the doctor can never be taken out of the equation, Shah says. Human judgment will always be required in medical care and an algorithm should never be followed blindly, he says.

Experts say that the flaws in artificial intelligence algorithms shouldn’t prevent people from using them – carefully.

Researchers are also concerned that their algorithms will be used to ration care, or that insurance companies will use their data to justify a rate increase. If an algorithm predicts a patient is going to end up back in the hospital soon, “who’s benefitting from knowing a patient is going to be readmitted? Probably the insurance company,” Percha says.

Still, Percha and others say, the flaws in artificial intelligence algorithms shouldn’t prevent people from using them – carefully. “These are new and exciting tools that have a lot of potential uses. We need to be conscious about how to use them going forward, but it doesn’t mean we shouldn’t go down this road,” she says. “I think the potential benefits outweigh the risks, especially because we’ve barely scratched the surface of what big data can do right now.”

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The Importance Of Death

In nature, death is a returning of nutrients to be remade into new life. Spring flowers will emerge where the turtle died to nourish bees, deer and other animals.

By Sarah Hatfield

We think of autumn as a time of harvest and brilliant color, a time when we can start to read more books and slow down and not feel so guilty doing so. Some might think of it as the ‘waiting room’ of the holidays, anxious to put up their lights and greenery. Still more might see work — falling leaves mean raking, mowing, and cleaning out gutters; moving firewood, putting gardens to bed, planting bulbs, and cleaning up the detritus of summer around the house.

Rarely do people think about autumn as death. Now I’m not trying to bring down the mood, but really, if you think about: those beautiful gold and scarlet leaves? Dying. The leaf piles that spark laughter and among children? Piles of death. The poor animals looking for secure places to spend the winter? Dead on the side of the road. Okay, perhaps this is all a bit harsh, but here’s the point I want to make.

Death is important, natural, and surrounds us daily. And honestly, most people I’ve met in this country don’t have a healthy relationship with it. I’ve been thinking about this a lot lately, reading some things from other people, and what really inspired this article was Halloween and how in other countries and in past cultures there is a celebration of death. Called many things, but here’s the point: they celebrate death.

Death is a returning, to all that we were before. No matter your belief. Perhaps you return to the soil, to your god, to the arms of the ones you’ve lost, or every dog you’ve ever had. Perhaps you return to a heavenly realm, a city of gold, or an inferno of fire and pain. That part differs for everyone (but may have something to do with why a lot of people fear death). Death itself is constant, ever present, necessary, and unavoidable. The circumstances leading up to a death might be tragic, sudden, or painful; or they might be slow, consuming, or painless. The death itself is the retuning, and something we should celebrate.

My dad died a few years ago in September, my dear Ryan died in December entirely too long ago: bookends to the season that grows darker and deeper. These are the two most recent deaths I carry with me. Before them, my aunt, my cousin, all four grandparents, acquaintances. Some expected, some not; some painful, some peaceful. Yet they cross my mind and heart and are still part of my life.

The tiny death of each leaf provides a home for animals rarely seen.

People mourn in different ways, but wouldn’t it be wonderful if there was a day that everyone — regardless of how they mourn — was given permission to do so? One day to remember the dead and who they were, what they meant, what they brought to your life. One day to let them fill you again with laughter, love, and comfort. One day to acknowledge that they will always be dead and you will carry the grief with you until you, too, die. It could be the one universal celebration of the one thing that awaits us all – death.

Back to the natural side of things, all those brilliantly colored leaves that fall to the ground, they are indeed dead. But through their death, they regenerate the forest floor, provide winter shelter and sustenance to millions upon millions of living things. Mammals gather those leaves to line their burrows and protect them from the bite of cold; death helping to guard against death. Countless species rely on this annual accumulation of death, the release of life no longer needed, to keep them alive and safe. Without death, much couldn’t live.

Death of the year’s growth allows the microfauna to thrive all winter, busily feasting and decomposing beneath the snow. This feasting on leaves and plants stems and animal bodies returns the energy of life to the tomb of dormancy, which returns to life with the rising of the spring sun. Seeds will tap into the rich humus of autumns past to push through the blanket of leaves and sprout anew in April’s light and warmth. Insect larvae will emerge from winter cases to fly upon warm spring breezes because death has sustained them through the darkest times.

Even now, as always, humans are part of this dance, surrounded by the death that so many fear, but is actually what, in fact, nourishes us. We eat vegetables and meat (dead things) to keep us healthy over the winter and throughout the year. We burn wood or petroleum products (dead things and really, really, really old dead things) to keep us warm. We make clothes from (dead) plant fibers, (sometimes, but not always dead) animal products, and petroleum products (once again, really old dead things). I’m sure you get the idea.

I guess what I want to share is that death is one of the most natural processes in the world. The living need death to continue living. Acknowledging that, accepting that, is healing, freeing. As we enter a time that many call depressing, dark, and torture, take a bit of time to look inward, face some fears, and have an honest look at how death sustains you and the life around you.

Leaves are gathered by many animals to make their homes warm for winter.

Regardless of race, religion, attitude, politics, origin, location, or occupation, death unites us as living things connected to a force we all share, are all a part of, and to which we will all succumb. Let’s celebrate that! With all the joy of a four-year-old and their dog jumping into in a pile of the crunchiest, most colorful autumn leaves, let us celebrate this season, this life, and the death that makes it all possible.

Complete Article HERE!