Law and Vulnerability Analysis

8/13/2019 Law and Vulnerability Analysis

1/35

1

INTRODUCTION

It was on a winter night in 1998 that Donna Henning awoke in a panic. She tried to roll

over, but realized it was impossiblethe right side of her body had gone numb. Her husband,

Dan, rushed her to the hospital and the two soon learned that Donna had Multiple Sclerosis.

Before this instance, both spouses were blessed with relatively good health and neither

understood what this serious diagnosis would do to their lives. Dan, a CPA, and Donna, a social

worker, would soon learn that their roles to each other, to their family, and to society would be

drastically altered in the years to come.

Donnas disease eventually left her immobile and she became dependent on Dan for basic

needs such as transportation, feeding, and bathing. At the beginning, Dan felt confident that he

could provide support for his wife and, with the help of her doctors; Donna could have the best

quality of life, despite her disease. This confidence was soon diminished when Dan discovered

that not one of Donnas doctors had warned him of the risks and dangers Donna was exposed to

just by being immobile. One of the most preventable risks, bedsores, would end up afflicting

Donna for the rest of her life. At this time, Dan had been transporting Donna to her different

doctors visits in an unpadded wheelchair, whichbecame the cause of Donnas first bedsore. It

was not until the bedsore had deteriorated Donnas skin, hit the bone, and became severally

infected did Dan even learn what a bedsore was and how his actions had caused his wife to

develop one.

After the first bedsore, Dan fought vigorously to prevent any more bedsores from

occurring. Dan was also fortunate enough to be able to afford all the best medical resources for

home-health carehe ordered and operated medical equipment, purchased Donna a hospital bed,

hired home-health nurses, and paid for several courses of physical therapy. Throughout the years

of caring for his wife, Dan became an expert on her disease such that he was able to spot


2/35

2

discrepancies in the medical care she was receiving from her many doctors. In several instances

that will be explained below, Dan found himself in an adversarial position against Donnas

doctors. Frequent instances of medical mistakes, lack of communication, and the unavailability

of information led Dan to distrust Donnas doctors to the point where he began to look to other

sources, such as the Internet, for help with Donnas medical care.

In September 2010, Donna was hospitalized for a urinary tract infectiona common

illness for bedridden individuals like herself who use catheters. She remained in the hospital for

two weeks and, upon discharge, Dan received no special after-care instruction. However, upon

returning home, Dan discovered that Donna had developed a severe bedsore during her stay at

the hospital. This bedsore was already developing signs of infection, which was not surprising

because Donnas disease deterioratedher immune system, leaving her very susceptible to

infections. At this stage in her disease, it was almost impossible for her to fight off infections

without being hospitalized and, from September 2010 to February 2011, Donna was hospitalized

four times. The infection eventually spread to her lungs and Donnas doctors decided it was best

to place Donna on hospice. Donna died February 9, 2011.

Donnas case leaves many unanswered questions. It was common knowledge to Donnas

doctors that Dan was inexperienced with caregiving and medical care; why did they not give Dan

all the necessary medical information about the risk and dangers associated with Donnas

immobility as soon as they recognized his role as her caregiver? If the healthcare system has a

monopoly on medical information, and Donnas doctors were unable to communicate this

information to Dan, where else could Dan have reasonably have turned to for help? Dans

relationship with Donnas doctors evolved from a trusting dependence, to adversarial, and

eventually the relationship turned hostile, with both sides unable to cooperate with the other. If


3/35

3

Dan and Donnas doctors had the same goal in mindto provide Donna with the best quality of

lifethen how could their relationship become so strained?

Dan should not have felt alone, isolated, and at-ends with Donnas doctors. Donnas

doctors and the healthcare system should have been aware of the importance of Dans role as

her caregiver and his need for information in order to prevent the medical risks associated with

Donnas condition. If, instead of looking for medical information on the Internetwhich has the

potential to be fraudulent and biasedDan was provided community-based services that offered

caregiver training, support and advice, his burden would have decreased and Donnas quality of

life would have improved. Ultimately, the current structure of the healthcare system does not

provide for a caregivers need for medical training and education and there are little, if any, state

services offered to provide these needs.

Dans case is not an isolated incident. As I will show below, caregivers are consistently

dissatisfied with the role they play in their loved ones care and feel oppressed by the medical

system. There have only been a few political and legislative responses to this incongruity

between caregivers and proper medical care and information provided by their loved ones

doctors. The vulnerability of caregivers within the current healthcare system is largely

unrecognized, even to physicians and nurses within the system. In this paper, I will argue that,

when examined in the context of human vulnerability and the responsive state, the importance of

caregivers is not only recognized, but also appreciated. The vulnerability analysis brings to light

the need for the state, the healthcare system, and caregivers to come together and form a

medical team that would prevent cases, such as Donnas, from occurring.


4/35

4

ISSUEWere not the experts in medical things. Should we be?

Over the next twenty to fifty years, important demographic and public policy trends

suggest that dependence on family caregivers will grow substantially.1Currently, family

caregivers have an uneasy place within the medical system. Historically, physicians have focused

more on the patients rights and interests, rather than the patients experiences with the illness or

the effect of the illness on the patients family and social relationships.2This is because the

medical field has focused on a theory that underlines contemporary bioethics, which places an

emphasis on patient autonomy and confidentiality.

2

Recently, the Council on Scientific Affairs of

the American Medical Association argued that family caregivers and physicians are

interdependent and should create a care-partnership.3However, since this teamwork approach

is a relatively new concept, healthcare professionals are unsure of how to properly integrate

family caregivers into the medical team.2

One of the most prevalent problems that caregivers cite to when dealing with their loved

ones medical care is the need for clear, consistent, understandable information about the

patients medical conditions and treatments.4Caregivers are not receiving vital information,

which points to a clear lack of communication between the physician and the caregiver.

Currently, physicians are either unwilling or unable to view caregivers as partners in medical

care, which places caregivers in a distinctively vulnerable situation because the healthcare

1

American Medical Association, Report to Group on Science, Technology, and Public Health, Physicians and FamilyCaregivers: A Model for Partnership(1993).

2Mitnick, Sheryl, Cathy Leffler, & Virginia L. Hood, Family Caregivers, Patients, and Physicians: Ethical Guidance toOptimize Relationships, Journal of General Internal Medicinevol.25.3 255, 260 (2010).

3Rabow, Michael W., Joshua M. Hauser, & Jocelia Adams, Care at the Close of Life: Evidence and Experience. 28 (AmericanMedical Association and McGraw-Hill Education, 2009).

4Roper Starch Worldwide, Inc., Report to The Alzheimers Association,Alzheimers disease Study: Communication Gaps

between Primary Care Physicians and Caregivers (2001).


5/35

5

system is one of the only institutions that can provide the medical information and aid that

caregivers need.

Caregivers play a vital role in their loved ones care. The unique relationship between the

patient and their families allows for continuous vigilance over the patients health condition and

the medical care that is given.5There has been little research done on the experience of patients

and their caregivers of patient safety and the role caregivers could play in reducing the incidence

and impact of preventable adverse events while the patient is hospitalized.5Unlike medical

professionals or home-health nurses who come and go, caregivers are situated as the witnesses of

the entire process of care the patient undergoes.

5

Caregivers, like Dan, often become experts in

their loved ones care and arevery adapt to recognizing and rescuing errors and adverse events

that may not have otherwise been noticed by a hospitals incident reporting system or patient-

care notes. 5 Some healthcare professionals have contended that if caregivers were actively

engaged by healthcare providers as partners in healthcare, caregivers could provide an extra

barrier to the health systems deficiencies.5The American Institute of Medicine even published a

report that reviews the potential changes in nurses working environments and acknowledges that

nurses should consider the roles of families in the proportion of patient safety.6Despite these

contentions, however, the healthcare system has yet to actuate this theory.

Qualitative studies demonstrate that patients and their caregivers are often unprepared for

their self-management role; they receive conflicting advice regarding illness management and

5Johnstone, MJ, & O. Kanitsaki, Engaging patients as safety partners: some considerations for ensuring a culturally and

linguistically appropriate approachHealth Policyvol.90.1 1, 7 (2009).

6Entwistle, Vikki. Nursing shortages and patient safety problems in hospital care: is clinical monitoring by families part of the

solution?Health Expectationsvol.7.1 1, 5 (2004).


6/35

6

are often unable to reach their healthcare practitioner when important questions arise.7In one

study, caregivers speculated that one of the biggest reasons their medical needs go unmet is

because of access-related difficulties, which includes refusal of services by doctors or hospitals,

problems with medical services, or the lack of an available doctor or nurse.8The role of patient

and family training and education has traditionally been assigned to nurses; however, the nursing

shortage has made it near impossible for nurses to find the time to adequately educate caregivers

on the multi-facetted elements of medical care.6To make matters worse, the heavily penetrated

Medicare Advantage market has been focusing on the reduction of hospital use for many years,

but still the healthcare system has failed to recognize the roles that patients and caregivers could

play in reducing hospitalization if training and education were offered to them.7This is also

despite the fact that it is widely known that caregivers are apt and well-motivated learners who

can be successfully trained in a wide variety of skills, including medical and nursing skills. 1

One of the primary reasons why caregivers are not been accepted as partners in their

loved ones medical care is because caregivers have to consistently act as advocates and

adversaries against the heavily bureaucratic healthcare system.8The Commonwealth Funds

safety-improvement specialist acknowledges this fact and explains,

[The healthcare] systems arent set up to have you involved . . . you have to bully yourway in to being a partner. And youre not really a partner, youre an imposition at thispoint. And patients [as their caregivers] feel that.9

It is particularly hard for the caregiver to be an advocate when challenging the health

professionals actions because it conflicts with the expectations that these professionals have of

7Coleman, Eric A, Carla Parry, Shandra Chalmers, & Sun-joon Min., The Care Transitions Intervention: Results of a

Randomized Controlled Trial,Arch Intern Med.Vol.166.17 1822, 1828 (2006).8Levine, Carol. & Thomas H. Murray, The Cultures of Caregiving: Conflict and Common Ground among Families, Health

Professionals, and Policy Makers 2 (The Johns Hopkins University Press, 2004).

9Entwistle, Vikki A., Michelle M. Mello & Troyen A. Brennan. Advising Patients About Patient Safety: Current Initiatives

Shifting ResponsibilityJournal on Quality and Patient Safetyvol. 31.9 483, 494 (2005).


7/35

7

the role of a submissive patient and caregiver.9 Caregivers are also hesitant to question a health

professionals actions because of the view that the physician knows better, even when the

caregiver may feel the treatment is wrong. Dan explains,

I started out being very nave. I thought the medical field would be correct and that theywould be proactive in [Donnas] care. ..For example,I let one of Donnas doctorsincreased her dose of a specific medication by 75%, even though I knew through my ownresearch that it should only have been increased by 10-15%. I didnt speak up and she gotvery sick.

Some health professionals have even acknowledged that patients who adopt behaviors that

question their judgment tend to make the professionals less inclined to engage positively with

them, which could seriously hinder adequate communication and a trusting relationship.

9

The relationship between family members and physicians has a history of being

adversarial.4 Family members respond unfavorably when they view their physician as

controlling and unfriendly, which suggests that family members not only want to feel accepted

by the physician, but they also want to feel they can actively participate in their loved ones

care.4One caregiver is quoted as saying, I dont think the decisions were in our control at all.

We were not the empowered ones because we did not knowI mean we are not the experts in

medical things. Should we be?10Physician and caregiver communication is especially strained

in urban areas where 28% of caregivers say they need help and information on how to talk to

doctors or other healthcare professionals, as opposed to suburban (20%) or rural (17%)

caregivers.10

A significant distrust of the healthcare system is prevalent in the United States. In a study

done by the National Patient Safety Foundation, 42% of respondents disagreed with the

proposition that the current healthcare system had adequate measures in place to prevent a

10Snyder, Lois, American College of Physicians Ethics Manual: Sixth EditionAnnals of Internal Medicinevol. 156.1 73,104

(2012).


8/35

8

medical mistake, and 48% indicated that they or their close friend or family had experienced a

medical mistake.5This fear is exacerbated when communication between the caregiver and

physician is strained. Poor communication leads caregivers to feel that the physician is hiding

something, knows more than was communicated, or is withholding potentially useful

information from them.11

The new challenge confronting family caregivers is their substantial involvement with at-

home medically related tasks. More than one-third of all caregivers provide help with

prescription medication, including medication given by injection, intravenously, by infusion

pump, or by suppository.

8

One-fifth change dressings or bandages, and 14.7% help with

complicated medical equipment such as oxygen, home dialysis tubes, or catheters.8 These tasks

require special training and are considerably more difficult when the patient is immobile or very

ill; however, a disturbing proportion of caregivers report receiving no instructions on performing

these tasks.8 Just under one-fifth of those who help with medical equipment received no

instruction and a similar proportion of those who administered prescription medication reported

the same.8In a postal survey from patients and caregivers discharged from the hospital, 60%

reported that they were not given sufficient information about dangerous signals to watch for

after discharge.12Coupled with the fact that 58% of physicians surveyed felt that the patients or

their caregivers were either very often or somewhat often responsible for medical errors in

11Herbert, Randy Scott, Richard Shulz, Valarie Copeland, & Robert M. Arnold, What Questions do Family Caregivers want toDiscuss with Health Care Providers in Order to Prepare for the Death of a Loved One? An Ethnographic Study of Caregivers ofPatients at End of LifeJournal of Palliative Medicine vol. 11.3 476, 483 (2008).

12Vincent, C.A. & A. Coulter, Patient Safety: What about the Patient? Quality Safety Health Care vol.11 76, 80 (2002).


9/35

9

their care,13it is clear that there is a connection between lack of caregiver training and

inadequate prevention of medical risks.

For help with these medical tasks, some caregivers reported turning to an informal source

of information, such as family, friends, or the Internet for information. Turning to informal

sources injects an element of chance at best and a risk at worst for the patients care.8 In a study

involving caregivers of Alzheimers patients, 88% of caregivers searched for information about

the patients condition or treatment on the Internet, and two-thirds of them reported still needing

more information.14While the Internet may provide one way of transferring information and

decreasing isolation among some caregivers,

15

the quality of medical websites and chat-room

information is suspect.16The sheer volume of available information itself is a problem and

makes it difficult for caregivers to locate crucial and accurate facts.14 Dan describes researching

on the Internet as, overwhelming at timesIt was time-consuming but crucial. I had to be

careful about misinformation. In certain cases, however, the Internet has provided caregivers

with the ability to uncover the potential errors made by physicians. Dan describes one instance,

I researched and discovered that a medication prescribed to Donna had negative reactions with

her Baclofen pump and this was the reason she kept fainting. It should have never been

prescribed to her. Though the Internet does provide some informational-benefits to caregivers,

low-income caregivers are at a significant disadvantage to falling into this digital divide where

13Davis, Rachel E, Rosamond Jacklin, Nick Sedalis & Charles A. Vincent, Patient Involvement in Patient Safety: What Factors

Influence Patient Participation and Engagement?Health Expectationsvol.10.3 259,267 (2007).14National Alliance for Caregiving and AARP, Report for MetLife Foundation Caregiving in the U.S. (2004).

15Donelan, Karen, Craig A. Hill, Catherine Hoffman, Kimberly Scoles, Penny Hollander Feldman, Carol Levine & David Gould,

Challenged toCare: Informal Caregivers in a Changing Health SystemHealth Affairsvol.21.4 222,231 (2002).

16Woolf, Steven H., Evelyn C.Y. Chan, Russell Harris, Stacey L. Sheidan, Clarence H. Braddock III, Robert M. Kaplan, Alex

Krist, Annette M. OConnor, & Sean Tunis, Promoting Informed Choice: Transforming Health Care to Dispense Knowledge forDecision MakingAnnals of Internal Medicinevol.243.4 293,300 (2005).


10/35

10

their physical and financial limitations prevent them from easily accessing the Internet and other

new technologies.14

Studies have consistently shown that physicians believe they give caregivers more

information than caregivers believe they receive,17which could explain another source of tension

between the physician and the caregiver. The information-disconnect is especially true in the

United States healthcare system. According to the results of a Commonwealth Fund survey in

2004, the frequency (33%) with which sick patients in the United States leave thephysicians

office without getting important questions answered is the highest among the five other countries

studied (the others being Australia, Canada, New Zealand, and the United Kingdom.)

13

In

another study of caregivers with loved ones in hospice, 38% of caregivers reported that the

doctor provided information as to what they could expect as the disease progresses, while 83% of

physicians say they provided such information.17This disconnect becomes even more drastic

when the caregiver needs information related to his or her own needs. Only 31% of caregivers

reported that doctors provided them with information on where to find help and caregiving

services, as well as information about their new responsibilities, while 88% of the doctors said

they provided it.17During the twelve years that Dan cared for Donna, he was never told of any

community-based care or education services, but he said he would have utilized these services

had they been provided.

The lack of communication between physicians and caregivers is due, in part, to the busy

pace of patient care and high workload of family physicans.16 Many physicians lack the time or

aptitude to consider the patient and caregivers individual informational needs and the best way

to communicate solutions to these needs.16Taking the time outside of the patients visit to

17Cherlin, Emily, Terri Fried, Holly G. Prigerson, Dena Shulman-Green, Rosemary Johnson-Hurzeler, &Elizabeth H. Bradley,Communications between Physicians and Family Caregivers about Care at the End of Life: When Do Discussions Occur andWhat is Said?Journal of Palliative Medicinevol.8.6 1176, 1185 (2005).


11/35

11

address these specific needs often provides little reimbursement to the physician for this effort.16

Most practices cannot afford to dedicate staff time to patient counseling or training for caregivers

and those that do call on personnel with competing clinical duties and inconsistent skills, which

compromises patient and caregiver education and makes reimbursement by insurance unlikely.16

Another major impediment to physician and caregiver communication is that caregivers

are unsure what to ask the physician because the caregiver often lacks experience with medical

care and illness. Unanswered questions and lack of understanding contributes to caregiver

distress and mistrust and can also cause medical errors and poor clinical care. One spousal

caregiver explains, Home caregivers dont know what they dont know. But I didnt know the

questions to ask the doctors, and professional caregivers dont know what youre ready to hear.3

Another caregiver says,

When [the patient] was in the hospital, they had a social worker, a pulmon ologist, andone of the head doctors, and we just talked to so many people. I cant even remember halfthe stuff we even talked about. It was just like we were bombarded. 11

A spousal caregiver asks, Why do I have to ask all of these questions to get an answer? Havent

[the physicians] done that before tobe able just to tell us what to do?11 Other caregivers are

worried about appearing to be ignorant and unqualified to take care of their loved ones if they

ask questions. A parental caregiver explains,

Medical terms, to us, are foreign. You dont necessarily understand and dont want to

show the doctor that youre ignorant, so 9 times out of 10 you say, okay, alright, uh

huh. Meanwhile, I dont understand a thing you just said.11

The fear of appearing ignorant is not motivated for selfish reasons; it is a constant worry of many

caregivers that, if their caregiving does not appear to be adequate, Adult Protective Services will

be notified by the physician or nurse and their loved ones may be forced to be in nursing home

care.11


12/35

12

For those who can afford at-home professionals or paraprofessionals, one in five users

expressed concerns about the quality of these services.15Caregivers who qualify for Medicare

can be provided paid home healthcare; however, recent changes to the system have drastically

limited those who qualify. 18There are now stricter definitions of homeboundness and medical

necessity and provisions now stress intermittent, rather than continuous, care for the patient.18

While aide services and help with activities or daily living were once readily available to any

Medicare beneficiary, the recent changes in the Medicare home health system provide

disincentives for agencies to provide these services.18These changes have dramatically reduced

the availability of Medicare as a dependable supplement to family caregiving and, while

Medicaid could fill this gap, it has failed to respond due to its strong nursing home bias. 18

Currently, there is a remarkable lack of attention given to obtaining and including patient

and caregiver perspectives on these issues.5This is particularly troubling because the best kind of

social policy in this area can be formulated if the State responds to what caregivers are saying

about the impact of societies changing demographic and healthcare environment on their lives.13

In my analysis below, I will theorize about why caregiversperspectives have been ignored and

argue why using the vulnerability analysis will lead to nationwide recognition of the importance

of caregivers and the need for state intervention in the healthcare system.

18Navale-Wallser, Maryam, Penny H. Feldman, David A. Gould, Carol Levine, Alexis N. Kuerbis & Karen Donelan, When the

Caregiver Needs Care: The Plight of Vulnerable CaregiversAmerican Journal of Public Health vol. 92.3 409, 413 (2002).


13/35

13

VULNERABILITY ANALYSISWe are beings who live with the ever-present possibility that our needs and circumstances will

change.19

Arguments about caregivers, the healthcare system, and the state are frequently structured

around the themes of individual autonomy, the private family, and caregiver personal

responsibility. Hardly any research concerning caregivers focuses on the role of the state and the

benefits of state intervention. Nor does the majority of research recognize that caregiving

responsibility is more than just an individual experience and caregiving provides benefits beyond

those to the family, but benefits to society as well. The vulnerability analysis offers all of these

arguments because it recognizes that caregiving is an experience that is unavoidable, universal,

and a societal asset. The vulnerability analysis recognizes the debt that society owes to

caregivers and the need for state regulation of the institutions that caregivers must structure their

lives aroundnamely, the healthcare system. When the vulnerability analysis is applied to these

issues, the burdens and responsibility of the caregiver will be alleviated because caring for

dependents is should not be the individual responsibility of a family member, but the collective

responsibility of society as a whole.

The vulnerability analysis concentrates on the structure that society has and will establish

to manage common vulnerabilities.19The term vulnerable is used for its potential in

describing a universal, inevitable, enduring aspect of the human condition that must be at the

heart of the concept of social and state responsibility.19Although the act of caregiving is

traditionally considered an individual or unique experience, it is actually universal and

unavoidable for most. Fineman explains,

19 Fineman, Martha Albertson. The Vulnerable Subject: Anchoring Equality in the Human Condition Yale Journal of Law andFeminismvol. 20.1 1, 24 (2008).


14/35

14

We may become caretakers even if we do not plan to. We might avoid having children

but all of us have parents, and many of these parents become disabled as they age andbecome dependent on their adult children. In addition, we ourselves might becomedisabledbecome the dependent rather than the caretaker in the caretakingrelationship.

20

We all have a shared vulnerability meaning that no individual is completely independent or

autonomous which Fineman calls the fundamental human reality.21The realization that no

individual can avoid vulnerability, especially caregiving vulnerability, re-frames the

conversation of the healthcare system. Instead of asking what caregivers should do, the question

becomes how can healthcare become more responsive to the needs of caregivers and what role

can the state play in providing these resources and facilitating this process?

Currently, the state is cast as a default institution, providing minimal, grudging, and

stigmatized assistance should families fail [in caregiving].21Since the family is private and

responsible for its own dependents, state assistance is currently viewed as a failure and

deserving of condemnation.21Instead of being considered a private responsibility, the act of

caregiving should be seen as a public benefit. Both the patient and the caregiver should be

viewed as vulnerable subjects rather than autonomous and independent beings. Since it is the

states role to be responsive to and responsible for its vulnerable subjects, 19 the state is

justified in assisting caregivers who are lost in the bureaucratized healthcare system. The state

should facilitate the idea of the government, the healthcare system, and the caregiver working as

a team to provide for the best quality of life for the ill and disabled.

The reason why such little research has been done that concerns caregivers perspectives

and experiences with the healthcare system is largely due to the private nature of the family.

There has been little state involvement in the family because there is a contrast between public

20Fineman, Martha Albertson, The Autonomy Myth: A Theory of Dependency 10 (The New Press, 2004).

21Fineman, Martha Albertson, The Autonomy Myth: A Theory of Dependency 8 (The New Press, 2004).


15/35

15

and private domains, with the state cast as the quintessential public entity and the family cast as

essentially private.19Historically, society has viewed dependency and caretaking as the job of

the family, which is located within the zone of privacy, beyond the scope of state concern

absent extraordinary family failures such as abuse and neglect.19Therefore, because

dependency is rendered invisible within the family, it is mistakenly assumed to be adequately

managed by individual caregivers. 19

It would be beneficial to view this issue through the lens of the vulnerability analysis

because the analysis blurs the line between public and private by recognizing that the public

and private are merely constructs and that institutions always affect, and are affected by, other

institutions as well as by the individuals.22Instead of viewing caregiving as a voluntary, private

duty, the analysis uncovers that there are no other systems put in place to help these dependents

and the voluntary nature of this responsibility is more of a mandatory, societal duty placed onto

caregivers.21Rather than viewing caregivers as dependenton the healthcare system, caregivers

should be considered vulnerable to the system because vulnerability, as opposed to

dependency, is unable to be eliminated individually. Instead, since caregivers are vulnerable, it is

the state and its institutions duty to provide adequate assistance to their vulnerable citizens.

The state is the only realistic contender to assist those experiencing natural

vulnerabilities.19 The state not only determines how the family and institutions are created, but

also how they interact.22The process of creating institutions, like the healthcare system,

establishes the state as the ultimate public authority.19 Therefore, the state should assume

corresponding responsibility to see that the healthcare system operates in a way that is not only

22Fineman, Martha Albertson, Elderly as Vulnerable: Rethinking the Nature of Individual and Societal ResponsibilityElder

Law Journalvol.20.1 71, 113 (2012).


16/35

16

efficient, but also equitable.22 The state should compensate and lessen caregiver responsibility

through different programs, institutions, and structures.22

Vulnerability is universal while also particular through the individuals experienceof

vulnerability.19The particular experience of vulnerability is greatly influenced by that

individuals resources and social goods, such as wealth and education.19Current institutions,

especially the healthcare system, operate in economic terms of efficiency that rarely takes into

account the social goods and responsibilities that that institution owes to its consumers and

society, which are often unmeasurable.19Hospitals, clinicians, and home healthcare care

providers currently function in terms of maximizing profits and providing better healthcare

through expensive technology.6This is where the state has a unique opportunity to accomplish

more ambitious and immeasurable goals because the state, unlike some of its institutions, is not

concerned primarily with maximizing economic efficiency.19The goals of the state should be

providing education, training, and proper information sharing to caregivers, especially since the

healthcare system is currently unable to do so.

Another important aspect to the vulnerability analysis is that it points to the fact that the

social contract theorythe idea that caregivers are able to negotiate with the healthcare system

on equal termsis fundamentally flawed. Currently, caregivers are viewed as liberal subjects

that have the ability to negotiate contract terms with the healthcare system, assess different

available options, and pick out of an array of rational choices offered to them; thus, caregivers

are required to take personal responsibility for themselves and their dependents.19 In reality,

caregivers are rarely in the position to negotiate with the healthcare system because, even if they

are given many different medical options, they lack the education and the information necessary

to make the best choice. As explained above, caregivers automatically view the physicians view


17/35

17

as the correct assessment, even when the caregiver may suspect this opinion is wrong. Caregivers

are likely unaware of different medical options because they have no medical training and,

especially in emergent situations, caregivers are unable to analyze the best medical decisions to

make due to lack of time and stress. The idea behind the contract theory is that the caregiver is

presumed to have competence and culpability19and, without proper education and training,

caregivers lack competence to properly contract with the healthcare system, assuming that the

bureaucratic system lets the caregiver even have a voice in the decision for thepatients

healthcare at all.

The vulnerability analysis also identifies that institutions are vulnerable.

19

Fineman

explains, Societys institutions cannot eradicate, and often operate to, exacerbate our individual

vulnerability . . . making reliance on these institutions particularly frightening.19 Caregivers

often have no other sources, outside of the healthcare system, for medical information and

assistance; therefore, they must rely on physicians and hospitals to provide for their needs.

However, the modern healthcare system is becoming more and more vulnerable with increased

physician workload, shorter hospital stays, and nursing shortages. It must also try to keep pace

with the emerging technology and increase in the number of aging baby-boomers patients.

Therefore, the state, being the only capable actor, must intervene to reduce these vulnerabilities.

Vulnerability can also provide positive aspects to society and, using the analysis, there

are many benefits to recognizing our shared vulnerability.22Vulnerability presents opportunities

for growth, creativity, and fulfillment. It makes us reach out to others, form relationships, and

build institutionsit can beembraced, not ignored.22 The vulnerability analysis has the

opportunity to bring together both caregivers and physicians through their shared goals as long as

each one recognizes the others vulnerability. Instead of shutting the caregiver out of medical


18/35

18

decisions and information, the physician could include the caregiver in the aspects of their loved

ones care through proper communication, respect, and care, which would facilitate a trusting

and more functional relationship. It is unlikely that this mutually-beneficial relationship could

form without state intervention.

Lack of access and availability of resources is one of the main reasons why caregivers are

vulnerable to the healthcare system. As Fineman asserts, it is through institutions that we gain

access to resources with which to confront, ameliorate, satisfy, and address our vulnerability22

and, under the vulnerability analysis, state-facilitated institutions provide physical, human, and

social assets and resources.

19

These assets serve as advantages, coping mechanisms, or

resources that cushion us when we are facing misfortune, disaster, and violence.19 Physical

assets are assets that impart physical or material goods through the distribution of wealth or

property.19 Human assets are innate or developed abilities to make the most of a given

situationthe accumulation of human capital or capabilities.19 Health and education are the

main assets in this category.19 Social assets are networks of relationships for which we gain

support and strength.19Cumulatively, these assets provide vulnerable individuals, like

caregivers, the resilience they require.19Since the healthcare system distributes societal goods, it

needs to be regulated by the state in order to create a fair and equal society that protects the

vulnerable. I will argue below that, through state intervention, the healthcare system can provide

caregivers all three types of assets.


19/35

19

ANALYSIS APPLIED AND POTENTIAL SOLUTIONSRepaying the Societal Debt

Fineman theorizes, There is a societal debt owed to caretakersowed by the whole of

society and its membersaccomplished through policies and laws that provide both some

economic compensation and structural accommodation to caretakers.20As explained above, the

state is the only entity that can appropriately compensate caregivers while also working towards

solving the disconnect between caregivers and the healthcare system. While I am unable to

provide for an ultimate solution to the fragmented healthcare system and or to the all difficulties

that caregivers face, I can propose social policy changes that will give caregivers the proper

assetsphysical, human, and socialin order to empower their important roles in the healthcare

system and in society.

First, I will briefly explain the programs already put in place to aid caregivers. In 2003,

the Older Americans Act (AoA) specifically acknowledged the critical role caregivers play in

societyby stating, Families, not social service agencies, nursing homes, or government

programs, are the mainstay of long-term care for older persons in the United States.23The

National Family Caregiver Support Program (NFCSP) was authorized by the AoA to support

family caregivers by offering the states the opportunity to provide for caregivers and, in 2005,

$163 million was allocated to the program.24There are no income requirements for the program

but states are required to give priority consideration to low-income, minority caregivers.24 The

funds allow states to provide information about caregiving services, assistance in gaining access

23Family Caregiver Alliance, Report to the National Center on Caregiving The State of the States in Family Caregiver Support:A 50-State Study(2004).

24Feinberg, Lynn Friss, Family Caregivers: the Backbone of Long Term CareMichigan Family Impact Seminars(National

Center on Caregiving, 2009).


20/35

20

to these services, individual counseling, support groups, and training, respite care and

supplemental services to complement family care.24

The NFCSP requires a 25% match which states meet using a combination of state general

funds, local funds, and in-kind distributions.24California, Pennsylvania, and Washington also

commit significant state general funds for explicit caregiver support programs that provide a

range of other services.24Michigan gives low-income persons who would otherwise be eligible

for institutional care Medicaid waivers that allow the recipient to choose out of many home and

community-based services.24Although these services are provided to the patient rather than the

caregiver, the waivers offer respite care and supplementary services like caregiver education and

training.24 In addition, Michigan uses consumer directionprograms that offer caregivers

maximum control of how, when and by whom respite care is provided and gives caregivers the

option of purchasing goods and services directly, rather than receiving them through an agency

that offers these services, which ultimately reduces caregivers out-of-pocket expenses.24 These

waivers also expand eligibility to include individuals whose income is up to 300% the standard

Medicaid eligibility.24

These programs show general promise as publically funded caregiving services are

increasing; however, access to these services is uneven within and across states.24Many of the

issues with these services are directly caused by the fact that the NFCSP is inadequately funded,

especially compared to Medicaid and other home and community-based services.24Also, states

have different perspectives on approaches to system development, the importance of home and

community-based caregiving services, and the integration of family caregiving programs into

these home and community-based services.24Recognizing family caregivers as consumers is a

new concept for many states.24In addition, state administrators lack adequate resources to meet


21/35

21

the range of caregiver needs which leads to gaps in caregiving services and a lack of options for

many caregivers, depending on where they live.24State administrators also often disagree about

how and to what extent service integration with other support programs for the elderly and

disabled persons should take place.24

The NFCSP seems to be the most useful for filling the gap by providing some support to

low to moderate-income families who are not eligible for Medicaid, but the program is grossly

lacking in funds and resources to reach out to all caregivers in every state.24 One of the major

reasons behind the lack of funding, besides the private nature of the family, is that a uniform

caregiver assessment is needed.

24

Currently, approaches determining the needs of caregivers vary

greatly and, without a good assessment of caregiver needs, the majority of state-funded and

Medicaid waiver programs assess only the recipient of the services, and not the caregiver.24

Currently, only five states use a uniform assessment tool that includes the assessment in

caregiver needs.24In a recent fifty state survey, it was found that there is a monumental lack of

public awareness about caregiver issues and outreach to informal caregivers is severely

lacking.24

Another national program established by the National Association of Area Agencies on

Aging (AAAs) is called Making the Link. This program is designed to help agencies participate

in an innovative outreach program that includes educating physicians on how to engage in

primary care for caregivers, how to identify caregivers at risk, and how to encourage caregivers

to seek community-based services provided by the AAAs.23 Unfortunately, only one fourth of all

AAAs are currently participating in the program. 23

Current federal programs seem to be at odds with one another. As mentioned above,

Medicare is a major source of paid home healthcare in the United States and recent changes in


22/35

22

the system now provide disincentives for agencies to service individual caregivers.18 These

changes also limit eligibility of Medicare by constricting the definition of homeboundness

causing home health aide services to only be provided when there is a need for nursing-skilled

care.18State Medicaid programs have legal authority to provide long-term care and could fill in

the gaps of Medicares cutbacks, but Medicaid fails to do so due to its strong nursinghome

bias.18Also, many Medicaid programs are actively engaged in shifting as many home healthcare

costs as possible. 18

Another issue with the two federal programs is that Medicaid primarily pays for a

majority of home and community-based services, whereas hospital care is in the domain of

Medicare.25Caregivers utilize and have a need for both home services and hospital care;

however, since the two programs operate separately from one another, there is little incentive for

one program to invest money and services into interventions that are likely to save money or

provide resources that assist the other program.25 One study has shown that the tension between

the two programs can be alleviated though the waiver system, much like the one implemented in

Michigan; unfortunately, only one state has utilized this.24

Although there are downfalls to caregivers relying on the Internet for guidance, several

websites allow free and reliable medical information. One of these websites is MEDLINEplus,

which offers information on more than six-hundred medical conditions.16Using the Internet for

medical information has come to be known as information therapy,but this therapy has yet to

be developed into a useful tool that provides tailored, accurate medical information and

materials.14 These websites, although useful, are rarely organized to support caregiver decision-

25Covinsky, Kenneth E., Robert Newcomer, Patrick Fox, Joan Wood, Laura Sands, Kyle Dane & Kristine Yaffe, Patient andCaregiver Characteristics Associated with Depression in Caregivers of Patients with DementiaJournal of General Intern

Medicinevol. 18.12 1006, 1014 (2003).


23/35

23

making and are hidden in the mass flow of medical information that is currently available on the

Internet. 16

The American College of Physicians declared that the patient has the right to self-

determination, and the World Health Organization has stated that patient involvement in care is

not only desirable, but also a social, economic, and technical necessity.26United States

lawmakers have deemed is necessary to legislative that patients be informed of all treatment

options and medical information so that they can participate in their medical decisions.26 Two

important examples are the laws in eighteen states that require physicians to inform women

about all the treatment options of breast cancer and the similar laws for prostate cancer.

26

If

patient knowledge of all the relevant and necessary medical information is a right, then why isnt

it a right for caregivers to receive all of the information that pertains to their role in patient care?

As I explained above, the healthcare system as a state-created institution should provide

its beneficiaries with physical, human, and social assets in order to empower those who are

vulnerable to the system itself. This can only be ensured through state intervention. In order to

encourage state involvement, there must be a nationwide recognition of the value that caregivers

add to society and that benefits given to caregivers are actually benefits for everyone. Currently,

caregiving is the foundation of the nations long-term care system and an important component

to the United States economy, with an estimatedvalue of $350 billion in 2006.27This is as much

as the total expenditures for the Medicare program and more than the total spending for

Medicaid, including both federal and state contributions for medical and long term care. 27 This

26Guadagnoli, Edward & Patricia Ward, Patient Participation in Decision -Making Social Science and Medicine

vol. 47.3 329, 339 (1998).27Gibson, Mary Jo & Ari Houser Valuing the Invaluable:A New Look at the Economic Value of Family CaregivingAARP

Public Policy Institute(2007).


24/35

24

figure is also far more than the total spending of public and private funds for nursing home and

home healthcare.27

If the state does not respond to the needs of individual caregivers, then the nation will

continue to suffer productivity losses and increased healthcare costs. There are between twenty

million and thirty-eight million adult caregivers that provide an average of twenty-one hours of

care per week.27One fifth of the United States workers are informal caregivers and productivity

losses to U.S. businesses related to informal caregiving are estimated to be as high as $33.6

billion in 2004.27These losses are attributed to replacing employees, absenteeism, care crises,

workday interruptions, supervisory time, and unpaid leave.

27

Caregiving is also very taxing on

caregivers themselves as it affects their mental, physical, and emotional health.27 Placing the

entire burden on individual caregivers leads to even more healthcare costs because caregivers are

more likely to eventually need caregiving themselves.27

Informal caregiving delays and prevents the use of nursing home care. The highest

predictor of nursing home entry is high caregiving stress, which is preventable with state

intervention.27 Caregiving by adult children also has been shown to reduce the likelihood that the

recipients of the caregiving will have Medicare expenditures for nursing home care and home

healthcare.27Without the contributions of caregivers, both the state and federal health and long-

term care budgets would be overwhelmed by the needs for services.27 In addition, the nation

would not have a sufficient supply of direct care workers to replace informal caregivers.27

Recognizing the benefits that caregivers provide society indicates that state intervention is not

only justifiable, but the ethical responsibility of the responsive state.

First, the state needs to provide caregivers physical assets through the healthcare system.

The current funding for the NFCSP is $162.4 million, which is one twentieth of one percent of


25/35

25

the economic value of caregiver contributions.27Given that caregivers provide an extensive

economic benefit to the nation, coupled with the fact that there is a deficiency in U.S. production

because of the nations reliance on individual family caregiving, the state should direct more

funds to the NFCSP program in order to make it effective and equitable. Also, physical assets are

mainly distributed through tax and insurance programs.19Caregivers should receive a tax credit

for the services that they provide for their dependents in order to offset the vast expenses

caregivers incur throughout the year.22The AARP also suggests that there should be a permanent

payment of family caregivers through consumer-directed models in publically funded

programs.

27

These models would be similar to the Michigan waiver program that would allow

caregivers to choose the type of services to fit their individual needs and would even offer

services that are not provided under the traditional Medicaid programs, such as respite and

caregiver education and training. 27

Once these programs receive proper funding, the state should provide caregivers with

human assetsmainly caregiver training and educationthrough an implementation of funding

to agencies that provide these services and establishing new programs that reach out to isolated

caregivers. Since caregivers are usually involved in the medical care of their dependents, but are

often without guidance or training, proper education from the healthcare system is needed.

Without training, caregivers may unwittingly compromise the quality and effectiveness of the

medical care of their loved ones. Formal education from physicians or nurses has proven to be

the most effective training mechanism for preparing caregivers for their role.23Training from a

healthcare professional could establish a beneficial relationship for both the caregiver and the

professional because formal training increases healthcare compliance, decreases staff time spent

on dealing with caregiver errors, and gives the healthcare system an enhanced reputation as a


26/35

26

caring practice which fosters trust in the system.23Since most insurance and healthcare plans

rarely provide adequate reimbursement for these training services,23the state should offer its own

reimbursement or tax incentives for health professionals who provide caregiver training.

The state should also consider implementing programs that reimburse preventative home

visitsa service that has proven to be helpful to caregivers in other countries.28When a

physician or nurse visits the caregivers home to train and observe the caregiving environment,

they are better able to engage in risk-identification and personal caregiver training.28This

reduces the financial and mental burden s of caregivers and provides the best quality of life for

the patient because the physician or nurse is able to correct the medical, functional, psychosocial,

and environmental aspects of their care.28 Since these visits would be costly and time-consuming,

the state should provide economic incentives to health professionals who provide these services

and the state should establish agencies that offer these services exclusively.

The primary care physician is the caregivers link to a wide range of health and social

services, but physicians are failing to communicate the availability and benefits of these

services.1 One way to solve this problem is for the state to provide economic incentives for

agencies to participate in programs like Making the Link, which educates physicians on

caregiver needs and the existence of support systems.4 If physicians are educated on the

importance of these services, they are more likely to communicate this to their patients and

caregivers. Also, the more these community-based services are utilized, the more likely it is that

other agencies will be encouraged to participate in these programs and provide caregiving

services, which would reduce the geographical limitations of these programs.

28Stuck, Andreas E., Matthias Egger, Andreas Hammer, Christop E. Minder & John C. Beck, Home Visits to Prevent NursingHome Admission and Functional Decline in Elderly People: Systematic Review and Meta-regression AnalysisJAMA: The

Journal of the American Medical Associationvol. 287.8 1022, 1028 (2002).


27/35

27

For physicians to properly educate caregivers, they must be able to view the caregiver as

a partner in the patients healthcare. The state needs to encourage the healthcare system to move

away from the biomedical model of patient care and recognize that patients are not autonomous

beings. Rather, a family-centered approach that includes caregivers in the medical team would

provide better healthcare to the patient and bridge the gap between physician and caregiver

communication. The state also needs to fund research that is focused on caregiver perspectives in

order to discover what services or programs would be the most useful.

Recently, the UK has taken a patient-centered approach to healthcare and implemented

legislation that enables increased patient, caregiver, and public involvement in medical decision-

making.29This approach has allowed physicians, patients, and their caregivers to work together

as a healthcare team.29The patient and caregivers are given access to the patients medical

records and the physicians assessment of their health and illness, which has facilitated open

communication and dialogue between the team members.29 The UK also offers educational

programs to help patients and their caregivers understand chronic illnesses better and programs

that encourage clinicians to share information with the caregivers.29There is some fear that the

teamwork approach will cause physicians to delegate more responsibilities to the caregiver than

he or she can handle;29however, with adequate state agencies in place to assist the caregiver, it is

unlikely that the caregiver will become overburdened. This practice is still in its beginning stages

of implementation, but it has already helped in eliminating the adversarial relationship between

caregivers and physicians and has created more respectful and trusting relationship.29

Another proposed solution includes an aspect of caregiver participation called clinical

monitoring where nurses educate caregivers in hospital protocol and procedures so that

29Sang, Bob, Choice, Participation and Accountability: Assessing the Potential Impact of Legislation Promoting Patient andPublic Involvement in Health in the UKHealth Expectationsvol. 7.3 187,190 (2004).


28/35

28

caregivers can make up for the current deficiencies in the healthcare system like nursing

shortages, medical errors, and inadequate hospital discharge instructions.6 The caregiver could

also provide additional monitoring assistance for the patients health during hospitalization and

help to ensure that information crucial to the patients care is not lost between handovers of

nursing staff.6 Clinical monitoring may improve the accuracy of communication between

caregivers and healthcare providers, reduce clinical errors, and provide helpful interventions and

aide in the patients care.6 However, proponents of clinical monitoring have stressed concerns

that, by identifying the deficiencies in the healthcare system, caregivers will be less likely to trust

the system and clinical monitoring would actually foster a more adversarial relationship between

the caregiver and physician.6At the same time, clinical monitoring may also allow for a more

trusting relationship between physicians and caregivers because caregivers will be aware of the

unavoidable shortcomings and vulnerabilities of the healthcare system, and will be less likely to

blame the physician and hospital staff for circumstances beyond their control. Clinical

monitoring may lessen caregiver frustrations and create a more open and honest dialogue

between caregivers and physicians.

Some U.S. communities have created decision-counselors who offer caregivers services

that clinicians cannot such as providing the best educational resources for patients and caregivers

without interference of competing agendas and specialty bias.6 Decision counselors guide

patients and caregivers in recognizing and applying their personal preferences to their care.6

These counselors are not clinical experts; rather, they function as highly-skilled knowledge

brokers who coachpatients and their caregivers to become engaged in their care, to understand

their personal preferences, and on how to act as patient advocates.6One example of an agency

that offers decision counseling services is Health Dialog in Boston, Massachusetts where


29/35

29

counseling is provided to patients through their employers or healthcare plans.6Health Dialog

furnishes health-coaches who motivate patients and caregivers to participate in treatment

selections, prepare for discussions with their physicians, weigh the implications of healthcare

options, and translate decisions into actions.6If the state, rather than individual employers or

insurance agencies, provided these services, then all caregivers could benefit from these third

party interventions. One potential downfall to this program is that decision counselors may

undermine or take the place of the family physician, who is the medical expert and closest to the

patients case;6however, if the physician is offered a state-provided incentive, like a tax credit, to

work with these counselors and the family, this fear may be eliminated and decision counselors

could be a great benefit to the healthcare system.

Social assets are networks of people that gather together to gain resilience in times of

vulnerability.19 Caregivers can be provided social assets by the state through community-based

programs, but these programs need to be holistic in their services and take into account the

personalized needs of caretakers. There is evidence that family support networks reduce

healthcare resource utilization and the presence of informal support systems may retard patient

institutionalization.1 A number of community-based programs have shown positive results.1

Currently, the most widespread community-based programs are in the form of support groups,

which improves caregiver socialization and knowledge, but does not effectively reduce caregiver

burden or stress.1 Individual counseling has only shown marginally better results than support

groups.1 Educational programs featuring only a presentation of information does not attract, nor

positively affect, caregivers.1 Nursing interventions could provide specialized education and


30/35

30

symptom management for patients and their caregivers but research on these interventions is

deficient because the nursing shortage has made these interventions a rare occurrence. 30

Caregiving training programs that have both behavioral management and social skills

aspects to the program decrease caregivers objective burdens and increase their attitudes on

asking for help, no matter the socio-economic status of the caregiver.31Even though most

psycho-educational interventions, like ones that teach problem solving and stress reduction

skills, do help to reduce caregiver burden, these interventions have yet to be effectively realized

in community-based programs.32The ineffectiveness of these programs could be because of the

deficiency in funding, lack of caregiver awareness about the existence of these programs, or

simply because the most effective services have not yet been identified because of the absence of

research. The state should fund research that focuses specifically on caregivers perspectives on

the healthcare system in order to grasp exactly what type of services caregivers need and what

community-based services or the healthcare system is lacking. Since current research seems to

ignore the views of individual caregivers, this funding could prove to be especially advantageous

on how to properly utilize state funds for these community-based programs.

Thus, the vulnerability model shows that the state needs to play a more active role in

paying back the societal debt it owes to its caregivers. The state should provide physical assets to

caregivers such as additional funding to the NFCSP program, tax breaks for caregivers, and

consumer-directed programs. The state should provide human assets to caregivers by investing in

programs like Making the Link, which educates physicians on how to identify the needs of

30McMillan, Susan C., Interventions to Facilitate Family Caregiving at the End of LifeJournal of Palliative Medicinevol.8.1

132, 139 (2005).

31Robinson, K. & K. Yates. Effects of Two-Caregiver Training Programs on the Burden and Attitude Toward HelpArch

Psychiatric Nursing vol.8.5 312,319 (1994).

32Reinhard, Susan C., Barbara Given, Nirvana Huhtala Pelick & Ann Bemis, Patient Safety and Quality: An Evidence-Based

Handbook for Nurses 14 (Agency for Healthcare Research and Quality, 2008).


31/35

31

caregivers and direct them to already-existing agencies . The legislature could encourage

patient-centered services, like the services provided in the UK, where the patient, caregiver, and

physician are considered a healthcare team. The state should provide compensation or

reimbursement for caregiver training done by healthcare professionals and should set up services

that are accessible to all caregivers, regardless of their individual insurance plans. The state

should fund further research on proposed solutions such as clinical monitoring and decision

counselors to decide if these proposed solutions should be executed through the legislature. The

state should provide social assets by funding research that takes into account individual caregiver

views of the healthcare system and community-based services, since the current services are not

providing for all of the needs of caregivers. The state should find effective community-based

services that bring together caregivers and provide education, training, counseling, and other

services. Viewing caregivers and their dependents as vulnerable subjects establishes that these

responsibilities are the responsibilities of the responsive state, and not of the individual

caregivers. Employing these procedures is necessary in order to build caregiver resilience and

empower their role within the healthcare system and society.

CONCLUSION

The current state of the healthcare system places caregivers in a uniquely vulnerable

position in society. Because caregiving is considered a private, voluntary duty of the family, little

is being done by the state or the healthcare system to alleviate the burden placed on the

caregivers, even though caregiving provides extensive benefits to the nation as a whole. To make

matters worse, the current healthcare system is dissuaded from reaching out to individual

caregivers and healthcare professionals are especially ignorant of the needs of caregivers, even

though they seem to be the only group in society capable of assisting them. Caregivers are


32/35

32

ignored not only by society, but by the medical field, which has not only caused tension between

physicians and caregivers but has also caused medical errors and a deterioration of the quality of

life in patients.

One way to empower caregivers and to help them overcome their state of vulnerability is

to view the issue of caregiving using the vulnerability analysis. The vulnerability analysis points

to the fact that we are all vulnerable and it is through our shared vulnerability that we are able to

reach out and help those in need. Caregiving will be an inevitability for most and, by recognizing

this experience as universal, society will be persuaded to find more effective solutions to the

current problems affecting caregivers in the United States. The vulnerability analysis stresses

that the state is the only actor that can improve its institutionstwo of the institutions being the

healthcare system and the family. It is time that caregiving become a mutually beneficial

relationship between the state and the family, as well as the family and the healthcare system.

One can only speculate as to how Donnas quality of life would have been changed if

Dan had received education, aid, and respect from the healthcare system. Or, if the state had

intervened and lessened Dans burden, would the tension between him and Donnas doctors have

been eliminated? Although these aspects would not change the fact that Donna would probably

not have survived Multiple Sclerosis, it is clear that she did not have to suffer through the

medical errors caused by the lack of communication between the healthcare system and her

caregiver, like the painful bedsores that eventually caused her death. Both Dan and Donna were

vulnerable subjects in need of a responsive state because the healthcare system had failed them.

It is time that the state take a more active role in supporting caregivers and uncover the silenced

voices of caregivers in our nation in order to prevent family tragedies like mine.


33/35

33

BIBLIOGRAPHY

American Medical Association, Report to Group on Science, Technology, and Public Health,

Physicians and Family Caregivers: A Model For Partnership(1993).

Cherlin, Emily, Terri Fried, Holly G. Prigerson, Dena Shulman-Green, Rosemary Johnson-Hurzeler, &Elizabeth H. Bradley, Communications between Physicians and Family

Caregivers about Care at the End of Life: When Do Discussions Occur and What is Said?

Journal of Palliative Medicinevol.8.6 1176, 1185 (2005).

Coleman, Eric A, Carla Parry, Sandra Chalmers, & Sun-joon Min., The Care Transitions

Intervention: Results of a Randomized Controlled Trial,Arch Intern Med.Vol.166.17 1822,

1828 (2006).

Covinsky, Kenneth E., Robert Newcomer, Patrick Fox, Joan Wood, Laura Sands, Kyle Dane &

Kristine Yaffe, Patient and Caregiver Characteristics Associated with Depression in

Caregivers of Patients with DementiaJournal of General Intern Medicinevol. 18.12 1006,

1014 (2003).

Davis, Rachel E, Rosamond Jacklin, Nick Sedalis & Charles A. Vincent, Patient Involvement in

Patient Safety: What Factors Influence Patient Participation and Engagement?Health

Expectationsvol.10.3 259,267 (2007).

Donelan, Karen, Craig A. Hill, Catherine Hoffman, Kimberly Scoles, Penny Hollander Feldman,

Carol Levine & David Gould, Challenged to Care: Informal Caregivers in a Changing Health

SystemHealth Affairsvol.21.4 222,231 (2002).

Entwistle, Vikki. Nursing Shortages and Patient Safety Problems in Hospital Care: Is Clinical

Monitoring by Families Part of the Solution?Health Expectationsvol.7.1 1, 5 (2004).

Entwistle, Vikki A., Michelle M. Mello & Troyen A. Brennan. Advising Patients About Patient

Safety: Current Initiatives Shifting Responsibility,Journal on Quality and Patient Safetyvol.

31.9 483, 494 (2005).

Family Caregiver Alliance, Report to the National Center on Caregiving The State of the States

in Family Caregiver Support: A 50-State Study(2004).

Feinberg, Lynn Friss. Family Caregivers: the Backbone of Long Term CareMichigan FamilyImpact Seminars(National Center on Caregiving, 2009).

Fineman, Martha Albertson, Elderly as Vulnerable: Rethinking the Nature of Individual and

Societal ResponsibilityElder Law Journalvol.20.1 71, 113 (2012).

Fineman, Martha Albertson, The Autonomy Myth: A Theory of Dependency 8 (The New Press,

2004).


34/35

34

Fineman, Martha Albertson, The Autonomy Myth: A Theory of Dependency 10 (The New

Press, 2004).

Fineman, Martha Albertson. The Vulnerable Subject: Anchoring Equality in the Human

Condition Yale Journal of Law and Feminismvol. 20.1 1, 24 (2008).

Gibson, Mary Jo & Ari Houser Valuing the Invaluable: A New Look at the Economic Value of

Family CaregivingAARP Public Policy Institute(2007).

Guadagnoli, Edward & Patricia Ward, Patient Participation in Decision-Making Social Science

and Medicinevol. 47.3 329, 339 (1998).

Herbert, Randy Scott, Richard Shulz, Valire Copeland, & Robert M. Arnold. What Questions

do Family Caregivers want to Discuss with Health Care Providers in Order to Prepare for the

Death of a Loved One? An Ethnographic Study of Caregivers of Patients at End of Life

Journal of Palliative Medicine vol. 11.3 476, 483 (2008).

Johnstone, M. & O. Kanitsaki. Engaging patients as safety partners: some considerations for

ensuring a culturally and linguistically appropriate approach,Health Policyvol.90.1 1, 7

(2009).

Levine, Carol. & Thomas H. Murray, The Cultures of Caregiving: Conflict and Common Ground

among Families, Health Professionals, and Policy Makers 2 (The Johns Hopkins University

Press, 2004).

McMillan, Susan C., Interventions to Facilitate Family Caregiving at the End of LifeJournal

of Palliative Medicinevol.8.1 132, 139 (2005).

Mitnick, Sheryl, Cathy Leffler, & Virginia L. Hood, Family Caregivers, Patients, and

Physicians: Ethical Guidance to Optimize Relationships, Journal of General Internal

Medicinevol.25.3 255, 260 (2010).

National Alliance for Caregiving and AARP, Report for MetLife Foundation, Caregiving in the

U.S. (2004).

Navale-Wallser, Maryam, Penny H. Feldman, David A. Gould, Carol Levine, Alexis N. Kuerbis

& Karen Donelan, When the Caregiver Needs Care: The Plight ofVulnerable Caregivers

American Journal of Public Health vol. 92.3 409, 413 (2002).

Rabow, Michael W., Joshua M. Hauser, & Jocelia Adams. Care at the Close of Life: Evidence

and Experience. 28 (American Medical Association and McGraw-Hill Education, 2009).

Reinhard, Susan C., Barbara Given, Nirvana Huhtala Pelick & Ann Bemis,Patient Safety and

Quality: An Evidence-Based Handbook for Nurses 14 (Agency for Healthcare Research

and Quality, 2008).


35/35

Robinson, K. & K. Yates. Effects of Two-Caregiver Training Programs on the Burden and

Attitude Toward HelpArch Psychiatric Nursing vol.8.5 312,319 (1994).

Roper Starch Worldwide, Inc., Report to The Alzheimers Association,Alzheimers Disease

Study: Communication Gaps Between Primary Care Physicians and Caregivers (2001).

Sang, Bob, Choice, Participation and Accountability: Assessing the Potential Impact of

Legislation Promoting Patient and Public Involvement in Health in the UKHealth

Expectationsvol. 7.3 187,190 (2004).

Snyder, Lois, American College of Physicians Ethics Manual: Sixth EditionAnnals of Internal

Medicinevol. 156.1 73,104 (2012).

Stuck, Andreas E., Matthias Egger, Andreas Hammer, Christop E. Minder & John C. Beck,

Home Visits to Prevent Nursing Home Admission and Functional Decline inElderly People:

Systematic Review and Meta-regression AnalysisJAMA: The Journal of the American

Medical Associationvol. 287.8 1022, 1028 (2002).

Vincent, C.A. & A. Coulter, Patient Safety: What About the Patient? Quality Safety Health

Care vol.11 76, 80 (2002).

Woolf, Steven H., Evelyn C.Y. Chan, Russell Harris, Stacey L. Sheridan, Clarence H. Braddock

III, Robert M. Kaplan, Alex Krist, Annette M. OConnor, &Sean Tunis, Promoting

Informed Choice: Transforming Health Care to Dispense Knowledge for Decision Making

Annals of Internal Medicinevol.243.4 293,300 (2005).

Law and Vulnerability Analysis

Documents

Transcript of Law and Vulnerability Analysis