The strangling and serious injury of a 49-year-old,
late-stage Huntington’s disease patient at an Oregon nursing home has shocked
the HD community and provided a shuddering reminder of the subpar care, fueled
by ignorance and approaching neglect, that some affected by the disease face.
Anne Haskins was allegedly strangled by another patient who
used a call cord ripped from the wall
after Haskins, wheelchair-bound and cognitively disabled, wandered into the
other woman’s room shortly before 9 p.m. PDT on May 28, said Rebecca Ambrose,
29, Anne’s daughter.
There’s no evidence Anne deliberately provoked the other
patient, whom police described as suffering from “severe dementia,” but her HD
chorea – the involuntary movements typical in HD – means she can inadvertently
hit people with her arms.
Anne was taken to Bay Area Hospital, located in Coos Bay,
OR. After the attack, her heart rate dropped to the dangerously low rate of
around 30 beats per minute, said Rebecca in a phone interview on May 30.
Anne is currently in the hospital’s cardiac unit. Doctors
offered the option of a pacemaker, but the family decided against one because
they believe it would simply help to prolong suffering, Rebecca said.
“She may have lost too much oxygen to the brain to recover
from this,” she added.
Anne Haskins, grandson Andrew, and dog Scarlet, about ten years ago, before HD left her unable to speak and care for herself (family photo)
‘Where was the
staff?’
According to the Coos Bay police, the alleged perpetrator is
under observation in the psychiatric ward at Bay Area Hospital. Avamere has
prohibited the alleged perpetrator from returning to its facility, Rebecca
added.
“Where was the staff???” Rebecca exclaimed in several
private Facebook HD discussion groups. Rebecca agreed to allow inclusion of her
Facebook comments in this article.
On the night of the attack, the certified nurses assistants
(CNAs), the main caregivers at the facility, should have put Anne to bed by
7:30. However, she was still moving around in her wheelchair around 9. No CNA
noticed that she entered the other woman’s room. A CNA came upon the injured
Anne sometime later, said Rebecca.
The police received a call for help at 8:49 p.m. According
to Officer Randy Sparks, the lead detective on the case, a nurse, responding to
the call alarm from the room, intervened to assist Anne.
“It just makes me angry,” Rebecca said. “I felt that it could
have been foreseen. It makes me angry to think that my mom could be killed, and
neither the person who did it nor the nursing home could be liable for it.
“How could one bedridden patient strangle another bedridden
patient and no CNA have a clue? There were five CNAs on the floor, according to
the director of the home.”
According to Deborah Nedelcove, Avamere’s vice president of
risk management and its chief compliance and privacy officer, 42 residents
currently occupy the 90-bed Coos Bay facility.
Above, the strangulation mark on Anne's neck. Below, daughter Liz with Anne in Bay Area Hospital (family photos)
Detective Sparks has concluded his investigation and
forwarded his report to the district attorney’s office. However, those
authorities have already have informed Rebecca that criminal charges will not
likely be filed because of the mental state of the alleged perpetrator, Rebecca
explained.
The alleged perpetrator is not currently under arrest.
“The police can investigate if there is a criminal action by
a patient,” she added. “They cannot investigate neglect by nursing home staff.”
Avamere’s response
Debbie Lane, the Avamere director of nursing, refused
comment on the case, as did Britta Milius, the nurse in charge when I called
the facility the evening of May 30.
VP Nedelcove, who works at the Wilsonville, OR, corporate
headquarters of the 50-facility private company primarily doing business in
Oregon and Washington, declined to comment on specifics of the case but offered
some observations about the facility and Avamere’s policies, procedures, and
philosophy.
“I have never heard of an incident like this,” Nedelcove,
who has some thirty years’ experience in health care, said of the strangulation
and Rebecca’s allegation of inadequate monitoring of patients. “This is an
isolated incident. It was not expected. You can’t account for people who decide
at a moment’s notice to do something.”
Nedelcove insisted that Avamere CNAs “definitely keep an eye
on all of our residents all the time…. There are many residents in our
facilities, and many of them have behavior issues.”
Avamere is conducting an internal investigation of the
incident and, based on its conclusions, may alter procedures at the facility,
Nedelcove added.
Seeking assistance
However, Rebecca has already contacted state oversight
agencies and local media outlets.
She has also obtained assistance from the
Northwest Chapter
of the Huntington’s Disease Society of America (HDSA). However, HDSA
cannot assist with placing Anne in a different facility because Anne, before
symptoms worsened, had refused to give power of attorney to any of her
relatives, preventing the sharing of medical information with an outside agency,
Rebecca explained.
Rebecca posted pictures of her mother’s injury on the
Avamere Facebook page, but the company removed them and then blocked her from posting additional
images. She
also placed a sign on the front door of the facility denouncing the strangling
but doesn’t know if it remains.
Rebecca and other family members fought a hospital’s staffer's recommendation that Anne return to Avamere and will place her in a different
facility,
Myrtle Point Care Center.
Rebecca is also consulting private attorneys about potential legal action.
Denouncing neglect
“I’m really disgusted with this,” said Rebecca, a family
advocate for a non-profit who tested negative for HD in 2006 and has
identified some 50 descendants of an HD-stricken great grandmother who are at
risk of inheriting the mutation. “I’ve told them I’m not going to be quiet
about this.
Rebecca Ambrose (personal photo)
“I feel like I already have to be robbed of my mother. I
feel a lot of times like I have to be the mother to my siblings and my child,
and I have to take on a lot of what a grandparent would do, because my mom
isn’t able to.
“I can still visit my mother. That’s being taken from me
slowly. I didn’t expect my mom to be in a nursing home and have an incident
that could cause her death. I always thought her disease process would cause
her death. I understand that there are going to be falls out of the shower or
the bed. But there’s no excuse for somebody to strangle my mother and for her
not to be protected in facility that gets $80,000 a year to care for her.
“I’m livid and I’m horrified. My mom used to watch that
movie
One Flew Over the Cuckoo’s Nest. I hate that movie. It’s one of the saddest movies I’ve watched in
my life. That’s the state of nursing homes in America today.
“I just want to talk to whoever is going to listen to me.
This can’t happen to people –when you entrust someone’s life! My mom is in a
facility for her own protection, not to be neglected. I can assure you that
nobody in my home would strangle my mother. I wish there were options that were
not for profit. These people do it for profit.”
Care providers: a
mixed bag
According to Rebecca, in early 2012 a man visiting Avamere
to see his wife became angry at Anne and tried to punch her because an employee had
accidentally taken his chair to Anne’s room.
Anne also suffers from bed sores, and she sometimes does not
get her spoon-fed evening meal until late at night, Rebecca said. The CNAs
bathe Anne, left incontinent by HD, just once a week, which understandably
leaves a patient uncomfortable.
“It’s really a mixed bag with the care providers,” Rebecca
said, referring to the CNAs, the main caregivers but also the lowest rung in
the nursing home hierarchy. “Some love and care for her and take the time to
feed her and meet her needs. Others fear her and skip over her as a patient or
try and put it off on somebody else.”
Rebecca said that she has witnessed CNAs taking as long as
two hours to respond to a call for assistance from patients. Nedelcove said
CNAs usually respond within minutes.
Because the law prohibits a patient from being restrained, the
facility cannot legally set the brakes of Anne’s wheelchair, to which she is
bound by two straps.
As a result, Anne bumps into other residents in the dining
room, knocks over food, and inadvertently hits people with her arms because of
her chorea. To avoid these difficulties, Anne takes her meals in her room,
Rebecca said.
Many of the CNAs have few or no qualifications, Rebecca
continued.
Nursing homes hire “anybody off the street,” she said,
adding, however, that several good facilities exist for HD people in various
parts of the country.
“It’s an entry-level job,” Nedelcove admitted, noting that
it’s “not a glamorous field.”
“It’s a calling rather than a profession,” she said.
However, she emphasized that all Avamere CNAs receive
academic and clinical training and are state-certified.
“Most of them come to us with a great deal of experience,”
she said.
A criticism of public
agencies
In 2009, Anne was sent to the nursing home to recover from
an operation needed after her HD symptoms had caused her to fall and injure her
brain.
For a while, Anne had hospice care, as her weight had fallen
to about 90 pounds. However, after her diet and weight improved, she no longer
needed hospice.
Public agencies will not fund the 24-hour home care that
would serve as an alternative to placing the patient in a nursing home, Rebecca
explained.
“They will pay the nursing home over $6,000 a month to pay
for somebody to give such little attention to my mother that she could get
strangled, but they will not pay for better care at the same rate in my home,”
she said.
Grossly
misunderstanding HD
CNAs, Rebecca said, need better preparation in order to take
“care of our elderly and the most vulnerable in society.”
Those vulnerable include thousands of HD patients, who,
along with their families, face enormous difficulties in finding facilities
that understand the disease and will take in someone with HD.
Rebecca recalled her family’s encounter with a past director
of nursing at Avamere.
“They usually deal only in comatose patients, not the kind
that can call down the hallway,” she said. The nursing director told Rebecca
that “my mother needed to stop calling down the hallway, because HD is not a
crutch and my mom is responsible for her own behavior.” The nursing director
stated that if Anne couldn’t control her calls down the hallway, she could be
evicted from the home.
“If you even say the word Huntington’s disease, nursing
homes don’t want to talk with you,” Rebecca said, noting that most facilities
focus on young people who are developmentally delayed or on the elderly, thus
missing the middle years, the period where most HD people experience onset of
symptoms.
Rebecca worked to educate the Avamere staff about HD. She arranged for the facility's previous director to participate in HDSA-sponsored caregiving webinars. He passed on information about HD to many of the staff. This “gave them some enlightenment,” Rebecca said.
However, because of recent high turnover at the home, including the removal of that previous director, few current employees have knowledge of HD, she said.
HDSA’s response and
recommendations
Staffers at the HDSA national office in New York expressed
deep concern about the incident and are closely monitoring the situation in
Coos Bay. However, HDSA cannot comment on the specifics of the case in order
not to violate patient privacy.
HDSA urges families to carefully research facilities before
placing a loved one. It provides a number of publications, articles, and other
materials regarding long-term care on its
national website.
It also offers free in-service trainings for long-term care
facilities.
As
previously reported, many in the HD community have
asked HDSA to provide funding for care. However, with an annual budget of only
$8.5 million, the organization could not begin to provide such assistance.
Families must rely on Social Security, Medicare, Medicaid, and other government
programs, as well as long-term health care insurance and other private insurances.
(In a future article: how segments of the HD community have strived to
provide better care for patients).
