By Ariella Steinhorn
At
an assisted-living home, Vinit Shinde lay paralyzed in bed attempting
to suck on a lollipop. One of his aides had positioned the phone so that
Vinit’s brother and sister-in-law could see him. Eventually when the
aide removed her hand from the stick holding the lollipop in Vinit’s
mouth, he seemed to gag, trying to activate any muscles of his jaw,
tongue, and throat to stop the lollipop from entering his throat or
dropping out of his mouth.
In
January 2018, Vinit suffered a severe and abrupt brain aneurysm at the
age of 45. Multiple doctors deemed him to be in an extreme vegetative
state, meaning that he did not have the typical brain function to
exhibit mood or affect, cognitive functioning, executive functioning,
language, or memory.
Today,
Vinit is alive because of a feeding tube and full-time care–but mostly
because of a decision made in Georgia’s Fulton County Probate Court,
transferring guardianship of his nearly $1 million estate and future
medical decisions from his brother to his ex-wife and court-appointed
attorneys. Vinit is now one of an estimated
1.3 million adults in the U.S. living under guardianship, whose
guardians control roughly $50 billion in assets. Across the country,
these arrangements are typically under the control of an insular group
of state judges and lawyers, who take on financial, legal, and medical
decisions for people who may be elderly or otherwise mentally
incapacitated.
Once
a guardianship has been cemented and a person is officially a ward of
the state, there is little recourse to change how their guardian makes
financial and medical decisions for them. While they’re done with the
interest of people like Vinit in mind, in practice, they can often be
mired in ethical, legal, and cultural dilemmas—posing a seemingly
unending string of impossible choices for the people who love and care
for them.
Before
the guardianship was transferred to Vinit’s ex-wife–whom he separated
from in 2012 and divorced from in 2016–his family had made the difficult
decision to move him into hospice. Without a will or advance directive,
his only living immediate relative, his brother, had signed a Physician
Orders for Life-Sustaining Treatment agreement with two doctors to
transition him off of life support. After years of consulting medical
professionals and believing that this would not have been a dignified
life for Vinit, they proceeded with the move to hospice.
Then
Vinit’s ex-wife—who would visit him from time to time—contacted the
Capitol Ombudsman Program director in Atlanta to allege that he was not
actually in a vegetative state but that he only appeared to be in one.
In public legal filings, she claimed that Vinit could watch television
and communicate with others by blinking, smiling, and laughing. (Slate
has reached out to Vinit’s ex-wife and her lawyer for comment, and has
not received a response.)
The
ombudsman set up time to observe Vinit, after which she determined that
removing his feeding tube was not in his best interests. Several
nonmedical staff at the home also expressed in a letter that they were
“distressed” about Vinit’s move into hospice, because “they believe [he]
responds to them with smiling and that he also smiles while watching
TV.”
In
depositions with two of his doctors, conservatorship lawyers for his
ex-wife presented the theory that there could have been a chance,
however infinitesimal, that he would be satisfied in a consciousness
that involved blinking his desires. She sought out to prove that not
only was Vinit conscious but that his condition could be improved.
Later, she filed a petition in the Fulton County Probate Court, seeking
to remove Vinit’s brother as his guardian and conservator, and
requesting that she be appointed the successor. With his ex-wife
emboldened by the support from nonmedical experts at the home and the
ombudsman, a fight over Vinit’s life and medical treatment—and the
conservatorship of his nearly $1 million estate—ensued.
Even
though both Vinit’s family and ex-wife may have his best interests at
heart and want to make the right decisions for him, they’re still left
with a set of decisions that have no right answer. What is in the best
interest for someone you love who can no longer care for or make these
choices for themselves? Can you let them go if there’s a chance—however
slim—that they can get better? These decisions underscore the complexity
behind the guardianship system at large. While this may not be the case
with Vinit, the system as a whole has long come under scrutiny amid
allegations of abuse, neglect, and even corruption throughout the
country.
While
individual family members or friends may have a myriad of desires and
opinions on how to handle care for an incapacitated loved one, the
financial and legal structures of the guardianship system can be ripe
for evading accountability and concentrating power among one or a few
stakeholders. For example, in Georgia, one 2020 investigation
uncovered apparent conflicts of interest in Fulton County’s
guardianship system, including a case where a court-appointed
independent lawyer donated to the judge overseeing the case. In New York, a ProPublica investigation
found rampant neglect and abuse, revealing that examiners tasked with
care “tend to focus almost exclusively on financial paperwork” rather
than the care and condition of wards. As a result, in August, the state announced a task force to overhaul the program, with some pushing for new legislation.
Other
states are taking notice: Pennsylvania now requires professional
guardians to pass certification exams, while Illinois lawmakers are
pushing to make it harder for private guardians to profit off of
vulnerable people who have no one else to look after them—after reports
that a private guardianship company and law firms representing hospitals
appeared to be colluding to run up costly bills at the expense of the
people under guardianship.
Georgia’s policies around life and death were recently thrust into the spotlight in the case of Adriana Smith,
a 30-year-old mother and nurse who was kept alive, brain-dead, as a
vessel to give birth to a baby without her consent. Smith was caught in
the crosshairs of the Supreme Court’s Dobbs decision,
validating a Georgia state law that considered her fetus a person if it
had a heartbeat. And the public at-large became familiar with the
concept of conservatorship because of Britney Spears, whose finances were tied up and controlled by her family after the system deemed her mentally unstable.
Then there’s Terri Schiavo’s case
in the early 2000s. Schiavo was considered by doctors to be in a
persistent vegetative state after her brain was deprived of oxygen.
While her husband conveyed what he thought her wishes would be—to have
life support withdrawn—her parents believed that she smiled and
expressed emotion. After life support was withdrawn, autopsies confirmed that she was indeed in a “persistent vegetative state.”
More recently, there has been a rise in what legislators are calling “death with dignity”
legislation. In several states, including Colorado, Maine, Montana, and
Nevada, legislation has passed or is being considered to allow for
people to choose physician-assisted death when they decide that life is
unbearable. But in these cases, many people still have the agency and
critical thinking skills to make that decision for themselves.
For example, one man in Maine chose physician-assisted death
last November after a long battle in ALS. His wife—now an advocate for
others to do the same—reported that he had lost the ability to speak and
swallow, and that his claustrophobia made him feel like he was
“drowning and suffocating” at the same time. Opponents or those with
more nuanced approaches to “death with dignity” believe that lines
should be drawn around depression or certain disabilities—that choosing
death while depressed is more about abandonment than autonomy.
But
what about people like Vinit, who could never have predicted a sudden
brain bleed rendering him with no autonomy? Who gets to choose for them?
Both Vinit’s family and his ex-wife may want the best for him—but even
they can’t know what exactly he would choose if he could right now. It’s
a case that’s emblematic of the core problem: These are impossible
decisions, and there’s no “right” choice with an impossible decision.
Several
years ago, Vinit was barely spending time in bed unless he was
sleeping. With no kids or pets and recently divorced, he had very few
grounding commitments beyond his job as an IT architect and a condo he
owned in Atlanta. According to friends and family, Vinit was a
gregarious person who liked to explore the world and had many friends.
His ex-girlfriend Sarah told Slate that he “knew no stranger,” was
“witty and funny,” and “everyone’s best friend.” One of his best friends
told Slate over text that “Vinit was vibrant, highly intelligent,
popular, and positive. Simply put, he was a pleasure to be around.” His
brother described him as a “kind, generous and very social person.”
On Jan. 27, 2018, Vinit’s 45th
birthday, he didn’t show up to work. Two days later, his employer
alerted his family. His family also had wondered if something was wrong,
as they hadn’t heard from him on his birthday either. Vinit’s best
friend, his best friend’s wife, and his ex-wife went to check on him at
his apartment. He was discovered by his best friend collapsed on the
floor, awake but incoherent.
Doctors
found that he had suffered a subarachnoid hemorrhage resulting from a
ruptured brain aneurysm. While they were able to coil the rupture and
keep his heart beating, he was extremely impaired—unable to swallow,
communicate, move his body, or control his bowel movements.
Vinit’s
brother recalls a neurosurgeon at the time saying that Vinit’s brain
was so damaged that the most he could ever do was “move his neck from
one place to another, or utter a few words,” he told Slate. In November
2018, around nine months after the aneurysm, another neurologist echoed
this analysis, telling the family that Vinit did not qualify for any
treatment options or experimental treatments because there was no
improvement in his condition.
Yet
Vinit’s family felt he was too young to let go. They moved him to a
brain injury rehabilitation center, but doctors there also concluded
that his brain condition was irreversible. It was around this time that
Vinit’s brother was appointed his conservator and guardian in Georgia.
He was moved to a nursing home, where physicians initially urged the
deescalation of life-sustaining care due to his negative prognosis and
poor quality of life. Vinit’s family was paying out of pocket for his
treatment, and they also crowdfunded
among friends and family to pay for some of his rising medical costs,
hoping that some progress could be made to improve his cognitive
functioning and quality of life.
But
two years after the aneurysm, Vinit was not showing any signs of
cognitive improvement. In a deposition, one of his doctors said he was
technically “demented,” but that his cognition was far worse than
someone who has dementia. A medical social worker also acknowledged that
Vinit was on a percutaneous endoscopic gastrostomy tube through which
all medication and nutrition were administered, and that he had “no
awareness of his surroundings and no purposeful movements.” A note
reviewed from his care center to a Georgia ombudsman referred to him as
“essentially brain-dead.”
His
brother told Slate that he imagined that the Vinit who was single,
enjoying his local bars, drinking beer, and traveling the world would
not have wanted to live in a bed covered in sores, unable to
communicate, and without the ability to feed, clothe, or bathe himself
unless fully assisted.
He
also reflected upon a conversation that the brothers had in 2017 at
their mother’s funeral, where they agreed that neither brother would
want a long or painful death like that of their father, who died of a
prolonged battle with cancer.
While
difficult to accept, Vinit’s brother and two doctors—the attending
physician at his home and the medical director of the hospice—signed the
POLST agreement, recommending discontinuation of care and designating
the three of them as the people who would make the end-of-life decisions
on his behalf.
In
January 2021, Vinit was referred to hospice, which the ethics committee
of the health care facility had no objections to. It was a
heart-wrenching decision for the family, but in a final letter written
to Vinit’s attending physician at the assisted-living home, his family
wrote: “[We] would talk to [Vinit] about settling down with a family and
buying a house. However, that was not his plan. He wanted to live
freely on his own terms.”
What
further complicates this answer about what is right or wrong for Vinit
is that researchers are giving pause to the idea that all people in
vegetative states have no consciousness—or that all people who become
nonverbal and paralyzed would rather choose death. These factors are
large parts of the reason why Vinit’s family and his ex-wife may try all
options—no matter how small the chance of success—of keeping him alive.
In August 2024, neurologists published a study
into the potential for consciousness among vegetative or minimally
conscious patients. They found that 25 percent of the patients studied,
who were asked to spend several minutes completing cognitive tasks like
imagining themselves playing tennis or swimming, responded with the same
patterns of brain activity seen in people with healthy brains.
Following the 2024 study that found potential consciousness in certain vegetative patients, it was noted in the New York Times
that “it is possible that people with disorders of consciousness may
one day take advantage of brain implants that have been developed to
help people with other conditions to communicate.”
But
since many of these vegetative states are brought about by a sudden
event like an aneurysm—meaning many previously healthy people may not
have had time to prepare a will or directive—the question of what they
would have wanted can be a tricky one to decipher. What also complicates
who lives or dies is the court systems, and the many people involved in
a family member’s life or death who might have competing interests—many
of which might be valid and well-intentioned, depending on the
perspective.
At
the end of the day, the decision for Vinit’s guardianship came down to
money. A judge ruled that Vinit’s brother had not received the proper
court approval to sell about $20,000 of Vinit’s stock in order to pay
for certain bills piling up—and that he should have sold their deceased
mother’s home in India instead.
In
a Fulton County Probate Court presentation reviewed by Slate—called
“Playing God: The Ethical Conflicts in End-of-Life Decisions”—Vinit’s
story is used as a case study to demonstrate the need for the court to
intervene and keep him alive. They even use Bollywood actors in one of
the slides about Vinit.
While
the Georgia probate court likely does not have jurisdiction over a
family home in India, the court was still able to claim that Vinit’s
brother was not acting as a proper fiduciary in the stock sale. As a
result, he was removed as guardian and conservator. Vinit’s ex-wife was
appointed as guardian to oversee his medical affairs, while a county
conservator was appointed to oversee his finances.
His
brother appealed the decision, but the court-appointed attorney for
Vinit agreed with the court’s decision to strip him of his guardianship
over his brother. The attorney’s statement to the Georgia Court of
Appeals said that fiduciary considerations were more important than the
POLST agreement or end-of-life considerations.
Today,
Vinit’s family FaceTimes him weekly from Boston to see his face, and
they travel from their home in Boston to Atlanta when they can. He seems
vacant and incomprehensible to them.
But
now, the family feels mostly in the dark about Vinit’s current and
future medical plans. Medical records reviewed by Slate show that Vinit
has been in and out of Emory University Hospital over the past few years
since his ex-wife became guardian. One document from 2023 states that
his insurance did not cover “post-transplant immunosuppressive drugs
when [he] got this service.” The family does not know what “this
service” refers to, but Vinit’s family and friends have observed an
increasing amount of “blinking” in their recent interactions with
Vinit—as well as the blurting of unrelated words and letters.
This
ambiguity is obviously frustrating to his family. Vinit’s sister-in-law
describes the perpetuation of his life, especially if his bodily
autonomy is indeed being transferred to his ex-wife’s decision-making,
as “cruel.” His brother adds: “As Vinit’s only living relative, I have
not been consulted or informed about ongoing medical treatment, raising
serious ethical concerns. Why are we excluded from medical decisions
about his care?”
In April 2023, the Shinde family received an amicus brief in support of their case from end-of-life care nonprofit Compassion & Choices, which wrote that:
The “court’s primary focus should be on uncovering what the
incapacitated person would have wanted and that the process followed by
the Georgia probate court in this case did not allow for that to
happen.” A spokesperson for Compassion & Choices shared with Slate
that they “weighed in with the amicus brief to ensure that the court was
prioritizing what Mr. Shinde would have wanted when determining what
treatment decisions were or were not appropriate.”
With various medical advancements over the years that allow for brain
injury patients like Vinit to be kept alive in care homes, the decision
about whether to withdraw life support and care—or not—can feel
unthinkable. There are open medical and scientific questions around the
presence of covert consciousness—and ethical and sometimes religious
questions around whether someone’s body should remain preserved, even if
the person who they once were feels all but gone. Then, there’s the
optimism around future medical developments for brain injury patients,
the notion that there is even the slightest chance that someone could
improve, especially when their faces may exhibit expressions we classify
with consciousness, like smiling. Although there may be no meaning
behind those reflexes in patients with severe brain injuries, the
presence of those seemingly human expressions may make it even more
difficult to let someone go.
Beyond
Vinit and his brother’s conversation at their mother’s funeral, there
is no documented information about whether he would have desired to be
kept alive in such a condition. (Vinit’s ex-wife and lawyers did not
respond to Slate’s request for comment.) Sarah, the ex-girlfriend who
perhaps knew him most intimately closest to his aneurysm, told Slate she
never spoke to him about whether he would want to stay alive in a
vegetative state. But she did say that “I 100 percent think that he
would not want to be sitting in a bed for seven years.”
When
asked about the family’s decision, Sarah said: “I would have supported
their decision. There are two avenues of thought: First, I don’t think
anyone should live this way, he wouldn’t want that. But it’s also not my
decision. It’s the family’s.”
Full Article & Source:
Conscious Decisions
