Rio Hondo Assemblages 2019

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Grecia Ortiz
Kenn PiersonGeiger, PhD
ENGL 101
24 November 2019

Every 65 Seconds
“Where is my daughter?” My mother asked me this question ten years ago and broke my
heart with those four words. She had just been diagnosed with Alzheimer’s and was slowly
losing her memory and dying in front of my eyes day by day. Her death will be slow and painful,
but it could be as simple as falling asleep. Thousands of terminally ill Americans are able to
choose when they die thanks to the help of physician-assisted suicide. Patients now have the
right to terminate their lives, voluntarily passing away in a deep, peaceful sleep. About 8.5
million people living with Alzheimer’s disease are not as fortunate, as they are unable to meet
the requirements set by the law that allows for physician-assisted suicide. The Alzheimer’s
Association reports someone in America develops Alzheimer’s disease every 65 seconds. Yet,
not one of those millions of patients can have the same option as other Americans with terminal
diseases. A movement has begun to change that. While some might argue physician-assisted
suicide is immoral, others defend it by saying it is humane and gives the patient dignity. The law
ABX2-15 involving physician-assisted suicide should be expanded to include late stage
Alzheimer’s patients.
Dr. Jack Kevorkian was a controversial American doctor, pathologist, and right-to-die
advocate who gained international attention with his support for physician-assisted suicide.
Physician-assisted suicide is the voluntary termination of one’s own life by taking lethal
medication with the direct or indirect assistance of a physician (Shiel). In 1989, Dr. Kevorkian

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unveiled a “suicide machine” on television, making headlines and sparking a debate on assisted
suicide within the country. In 1990, he assisted in the suicide of Janet Adkins who was suffering
with Alzheimer’s, making her his first patient. When the news broke, he was sought after by the
state of Michigan and charged with Adkins murder. The case was dropped, but he was
prosecuted again for helping other terminally ill patients spending eight years in jail (“Jack”). He
was monumental for introducing the country to physician-assisted suicide, although he was
ahead of his time. In 1997, Oregon became the first state to approve physician–assisted suicide
and enacted the “Death with Dignity Act,” allowing terminally ill patients to request it. Since its
approval, six other states have followed, including California in 2015 when ABX2-15 was
passed into law as the “End of Life Option Act” (Monning and Wolk). Physician-assisted suicide
is now available to terminally ill patients who meet the law’s requirements, but patients with late
stage Alzheimer’s are unable to qualify. Alzheimer’s is a terminal brain disease that progresses
and destroys all memory and function. There are seven stages in Alzheimer’s, increasing in
severity as the disease progresses. On average, Alzheimer’s can last an average of eight to ten
years. One in every ten Americans over the age of 65 are diagnosed with Alzheimer’s (“Facts”).
According to the list of the top 10 leading causes of death in the US, Alzheimer’s is the sixth
leading cause of death and is the only one that has no cure, prevention, or way of slowing it
down (Nichols).

Terminally ill patients with late stage Alzheimer’s are unable to comply with
requirements involving physician-assisted suicide. Late stage Alzheimer’s patients have
debilitating physical disabilities that prevent them from qualifying for physician-assisted suicide.
In order to qualify, the law ABX2-15 states, “The individual [must have] the physical and mental
ability to self-administer the aid-in-dying drug” (Monning and Wolk). This automatically

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disqualifies Alzheimer’s patients who have less than six months to live. Patients suffering with
late stage Alzheimer’s have multiple physical disabilities that prevent them from signing legal
paperwork. The Alzheimer’s Society states that patients “[l]ose the ability to walk without
assistance, then the ability to sit without support, the ability to smile, and the ability to hold their
head up. The brain appears to no longer be able to tell the body what to do” (“Progression”).
With this, the patients’ ability to communicate is eradicated. They can no longer express final
wishes or make any decisions for themselves. Aside from communication, the swallowing
function is also affected. Late stage Alzheimer’s patients are unable eat or drink during their final
weeks because they forget how to swallow. Nearly 50% of patients with Alzheimer’s have
difficulty swallowing (“Chewing”). The medicine used for physician-assisted suicide needs to be
self-ingested; therefore, it is useless for patients in the last stage of Alzheimer’s. In my
observation of the effects of the last stage with my mother, Alzheimer’s has left her immobile
and nonverbal. She has not spoken a single word for at least four years. She is unable to sign her
name and must be spoon-fed an all-puree diet because her swallowing capability has been
diminished. Due to physical limitations, late stage Alzheimer’s patients are unable to qualify for
physician-assisted suicide.

Late state Alzheimer’s patients also lack mental competence to make the legal decisions
needed to qualify for physician-assisted suicide. During the final stage of Alzheimer’s, the
amount the brain shrinks due to atrophy is significant. Amanda Page, a researcher, explains the
percent of brain loss that occurs. Page reports that the hippocampus, an area responsible for
memories and orientation, shrinks by 25% in an Alzheimer’s patient. Although shrinkage of the
brain is normal with age, Alzheimer’s causes excessive brain damage as the brain shrinks to one-
third of its size as the disease progresses. A healthy brain has thick folds and groves that are

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compacted together. With Alzheimer’s, the patient’s brain has visibly thinner folds and more
space between them (“Normal”). This brain damage affects the patient’s ability to comprehend,
reason, and make important medical decisions (“Late”). The National Institute in Aging explains,
“It later affects areas in the cerebral cortex responsible for language, reasoning, and social
behavior” (“What”). Late stage Alzheimer’s patients are unable to understand and follow basic
commands and depend on caregivers to assume what is best for them. The law ABX2-15 states
patients must make the decision to ask for physician-assisted suicide by their own free will
(Monning and Wolk). Alzheimer’s patients in the late stage can no longer remember their names
or loved ones, much less go through all the rigorous steps of physician-assisted suicide. The
Coalition for Compassionate Care of California reports, “The request must be made solely and
directly by the patient to the attending physician, and cannot be made on behalf of the patient
through a power of attorney, an advance health care directive, a conservator, health care agent,
surrogate, or any other legally recognized health care decision maker” (qtd. in “End”). It also
states if the physician suspects mental impairment, the patient must see a psychiatrist. Because of
all the changes Alzheimer’s causes to the brains of late stage patients, they are unable to qualify
for physician-assisted suicide because of the lack of mental competence. As Alzheimer’s took
over my mother’s brain, I found myself being her voice. She is unable to make her own medical
decisions, and I had to get legal documents to be able to take her to the doctor and manage her
finances. There is no way she could even begin the process of requesting physician-assisted
suicide. If the law were extended, it would make it possible for patients with late stage
Alzheimer’s to qualify before deteriorating symptoms begin.

If late stage Alzheimer’s patients were able to qualify for physician-assisted suicide, it
would lower financial burdens for all parties involved. Physician assisted-suicide would reduce

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spending on U.S government-funded programs such as Medicare and Medicaid. The Alzheimer’s
Association estimates the cost of Alzheimer’s disease on Medicare and Medicaid this year to be
a total of $195 billion dollars. Of that, Medicare has spent $146 billion dollars and Medicaid $49
billion dollars, just in 2019. That means one out of every five dollars spent on Medicare is on
someone with Alzheimer’s. For comparison, the average annual spending by Medicare on
seniors without Alzheimer’s is $7,561, compared to $24,598 spent on people living with
Alzheimer’s. Long-term care is the most expensive service that Medicare has to pay (“Facts”).
The Centers for Disease Control and Prevention states that Medicare spends funds on various
programs needed for long-term care of patients living with Alzheimer’s, such as adult day
services, residential care, home health, nursing homes, and hospice. Patients will have to resort
to these resources for help and care throughout the progress of this disease. The CDC reports,
“Long-term care services were provided by 4,600 adult day services centers, 12,200 home health
agencies, 4,300 hospices, 15,600 nursing homes, and 28,900 assisted living and similar
residential care communities” (Smalls et al). Medicare and Medicaid pay 100% of the costs spent
on hospice and necessary durable equipment required by patients. The Alzheimer’s Association
reports that the cost of care in the last 5 years of life of a person living with Alzheimer’s is over
$287,000 (“Facts”). These expenses account for doctor visits, hospital stays, hospice,
medications, durable equipment, and physical therapy. All of which are necessary to a late stage
patient suffering from Alzheimer’s. As if these numbers were not astronomical on their own,
they will continue to rise with population growth and lengthened life expectancy. The CDC
reports, “The burden of Alzheimer’s disease and related dementias in 2014 was 5 million people,
which is 1.6 percent of the U.S. population in 2014—319 million people. This burden is
projected to grow to 13.9 million, nearly 3.3 percent of the population in 2060–417 million

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people” (“U.S”). This means that in the future, one out of every three dollars spent by Medicare
will be on Alzheimer’s patients. By the year 2050, there will be up to 16 million people suffering
from Alzheimer’s (“Facts”). Changing the law ABX2-15 to make physician-assisted suicide
possible for late-stage Alzheimer’s patients will save the U.S millions of dollars spent on
government-funded programs like Medicare and Medicaid.

Relatives would not have to bear the costs of lifelong care for their loved one if the law
ABX2-15 included late stage Alzheimer’s patients. Aside from what the government spends on
patients with late stage Alzheimer’s, relatives of the patients carry a heavy burden providing
financially for their loved one. There are 16 million caregivers providing 18 billion hours of
unpaid care that translates to $232 billion dollars (“Facts”). The American Journal of Managed
Care reports, “Annual costs for informal care are estimated to be $10,400 to $34,517 per patient.
Additional costs associated with AD include lost wages…” (“Prevalence”). Caregivers assist in
daily activities by helping patients with activities such as bathing, changing, dressing, meals,
doctor visits, and managing bills. Jody Gastfriend, registered nurse, explains to Forbes that while
most caregivers attempt to work, 60% of them report financial problems caused by not being
able to show up to work because they need to provide care. Caregivers often find themselves
having to quit their jobs when this disease advances because their loved one heavily depends on
them. Cure Alzheimer’s explains, “The average annual out-of-pocket costs (to care) for older
adults with Alzheimer’s and other dementias are nearly five times higher than costs for people
without those conditions ($10,315 versus $2,232)” (“Stats”). All of these costs increase as the
disease processes as patients need 24-hour care during the final stage. You might wonder about
help from paid caregivers. For families already struggling with out-of-pocket costs, paying for
care is out of reach. According to Paying for Senior Care, the national average cost of home

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health varies from state to state and averages $26 an hour in California (“Understand”). To a
struggling caregiver, this is impossible to do without having a job in the first place. Families are
left without options. This subject has caused a great deal of stress to my family’s life. We dealt
firsthand with this issue when my mom was diagnosed with Alzheimer’s ten years ago, and my
father was out of options. He could either work and not provide the care she desperately needed,
or quit his job and lose his home. I quit my job to care for her fulltime so that he could continue
to work and keep his home. Not all caregivers are blessed to have someone step up and provide
care. Caregivers are forced to look for other ways to provide financially. They at times refinance
their homes, take an early retirement, or sell belongings just to keep their loved one safe and
comfortable. It is easy to think about placing a patient in long-term care, but for the average
income, that is impossible as well. According to Senior Living, nursing homes that provide
specialized memory care cost on average of $4,900 a month in California (“Memory”). The cost
of long-term care is too much for caregivers and is out of reach for most families. In my family’s
case, we cared for my mother with financial sacrifice until hospice got involved. We had to pay a
share-of-cost for prescriptions, doctor visits, and physical therapy. Once she became incontinent,
we sought help from her insurance only to find out incontinence supplies are not covered by
insurance. My dad had to work overtime often to make ends meet. Whichever way we look at it,
caregivers are stuck between a rock and a hard place. Changing the law ABX2-15 to include late
stage Alzheimer’s patients would eliminate the financial burden put on relatives.

Since death is the ultimate outcome of this disease, there is not a need to prolong physical
and emotional suffering. Patients suffer physically during the final stage of this disease, which
may be significantly reduced by allowing physician-assisted suicide to late stage patients.
Alzheimer’s affects the patients mobility severely, ultimately making them bed bound. The

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patients end up with muscle atrophy and joint contractures due to non-use. According to the
Journal of American Geriatrics Society, more than three quarters of patients lose mobility and
develop joint contractures. Once developed, contractures usually involve more than one
extremity in 94% of cases, and all extremities in more than two-thirds of patients. They report,
“Joint contractures are very common in the severe stages of Alzheimer’s disease. More than a
quarter of a million institutionalized residents in US nursing homes are likely to be afflicted by
this potentially painful and disfiguring condition” (“Contractures”). Moving the patients causes
extreme pain, and it becomes difficult to change and wash them without causing discomfort. All
the while, the patients cannot verbally express their pain; they must depend on the caregiver to
translate agitation and grimacing for pain. Along with immobility, pressure sores are also
frequent in patients with late stage Alzheimer’s. Pressure sores or pressure ulcers are an injury to
the skin caused by prolonged pressure on body areas such tailbone, hipbones and heels
(“Bedsores”). These sores are extremely painful requiring constant monitoring and wound care,
as they can take weeks to heal. In my mother’s case, she has experienced both contractures and
pressure sores. It has become difficult to change her due to her loss of range of motion. Her body
has curled up to the fetal position and her hands into a tight grip. It hurts her when she is
changed, bathed, or repositioned. Ultimately, death is the only outcome of this disease. Dying
from Alzheimer’s is a brutal way to leave this world after suffering for years. According to the
American Journal of Hospice and Palliative Care, 93% of deaths occurring from Alzheimer’s
are considered to be of high or intermediate level of suffering (Adunsky and Aminoff). Death
usually occurs from either starvation or aspiration pneumonia, both brought upon by dysphagia.
Dysphagia, or trouble swallowing, is a result of weakened muscles that occurs in late stage
Alzheimer’s that makes the patients have difficulty swallowing correctly. A journal published by

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Clinical Neurophysiology states that dysphagia affects 75% of Alzheimer’s patients. Dysphagia
causes a lung infection known as aspiration pneumonia due to swallowing incorrectly into the
lungs instead of the stomach (Secil et al). If the patients can no longer open their mouth for food
or liquids, they “starve to death” in a process that takes days. With death being the only outcome,
the physical suffering of late stage Alzheimer’s patients could be significantly reduced by
expanding the law ABX2-15, allowing physician-assisted suicide to late stage Alzheimer’s
patients.

Caregivers’ physical and emotional health suffers while caring for their loved ones,
which would be significantly reduced by allowing physician-assisted suicide. The health of
caregivers is often overlooked, as the caregivers are busy providing care and being the backbone
of their loved ones. Caring for patients with late stage Alzheimer’s puts caregivers at an
increased risk of developing health conditions, due to them ignoring their own health to continue
to provide care. U.S Pharmacy informs that 40% of all caregivers suffer from depression, 60%
suffer from anxiety, and 66% suffer weight gain or weight loss (Pal). Dr. Henry Brodaty and Dr.
Marika Donkin explain in Dialogues in Clinical Neuroscience that caregivers are at an increased
risk of cardiovascular problems, low immunity, diabetes, and drug problems. They inform,
“Caregivers report a greater number of physical health problems and worse overall health
compared with non-caregiver controls. Those with psychological morbidity and greater strain are
even more likely to have poor physical health and a higher risk of mortality” (Brodaty and
Donkin). Because of this, late stage Alzheimer’s patients tend to outlive their own caregivers.
Since my mother’s diagnosis, my father has developed diabetes and has not been able to manage
his blood sugar. He has high-blood pressure and takes different medicines and insulin in an
attempt to manage both diseases. He neglected his health for years and has developed kidney

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problems as a result. Since her diagnosis, I have also been under my doctors’ care battling
depression and anxiety. Losing my mother at a young age had a great impact on me
psychologically. Changing the law ABX2-15 to allow physician-assisted suicide to late stage
Alzheimer’s patients would significantly reduce emotional suffering of caregivers.

In conclusion, late-stage Alzheimer’s results in heavy burdens to families, patients, and
public health systems. Changing the law ABX2-15 to include late stage Alzheimer’s patients
would allow millions of terminally ill patients to qualify for physician-assisted suicide. In turn,
physician-assisted suicide would lower financial burdens in both government spending and
financial burden on relatives. Patients would not suffer physically, and their caregivers’
emotional health would not suffer. Every 65 seconds someone develops Alzheimer’s disease in
America. Up to this point, it has taken me 20 minutes to read what I have written above. That
equates to an average of eighteen people developing Alzheimer’s since the beginning of this
essay. Eighteen human beings who do not have an option but to waste away and wait to die.
Eighteen families that will suffer along with the burdens this disease brings upon them. Eighteen
souls that could be spared a slow painful death. If the law ABX2-15 is expanded, those eighteen
could die in a deep, peaceful sleep like other terminally ill patients, with dignity and respect, like
the law states.

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Works Cited
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Little Palliation.” Sage Journals, American Journal of Hospice and Palliative Medicine, 1
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