Llewellyn Worldwide - Hospital Stay Handbook: Excerpt

An Advocate's
Perspective on Advocacy:
A View From the Bedside

Only a person who risks is free.
The pessimist complains about the wind;
The optimist expects it to change;
And the realist adjusts the sails.
-William Arthur Ward, To Risk

The very best place for a critically ill patient is in the hospital. The very
worst place for a critically ill patient is in the hospital.

It is a double bind of the worst kind, especially for family members of that
critically ill patient. Hospitals have become such frightening places for a variety
of reasons. Let's begin by looking at the economic factors that affect the cost
and quality of care.

Over the next twenty years, those of us who are baby boomers will strain an
already ailing system as we enter our senior years and require additional care,
adding 76 to 78 million potential patients in that time frame.1

Out-of-pocket healthcare costs are skyrocketing for all Americans, especially
those with low incomes and fixed-income retirees. These people cannot earn
more to offset the accelerating costs, and as a result they forego medicines and
treatment, compromising their health. Today, out-of-pocket healthcare costs average
19 percent of income for people 65 and over and almost 50 percent for
those on Medicare.2

Health insurance premiums paid by working employees have increased 73
percent since 2000, at a rate five times faster than workers' earnings have risen.

For the typical Fortune 500 company, the expense of employee health insurance
will zero out profits soon if nothing changes.3 Employees and employers face
tough decisions inside a healthcare system that is primarily employment-based.

The eighteen-month cap on COBRA benefits offered to departing employees
only compounds the problem. More and more workers are either losing coverage,
opting for catastrophic coverage only, or dropping healthcare insurance
altogether as a way of managing costs. The number of uninsured has grown by
more than one million people per year for the last five years.4 This trend leads
to later treatment of sicker people at higher, nonreimbursed costs.

Among industrialized nations, the United States spends more than twice the
average per-capita amount on healthcare. But the quality of that care does not
parallel the extra spending. These facts were noted in a Commonwealth Fund
report published online in September 2006:

• As a whole, the United States healthcare system falls short of the benchmarks
set by other industrialized nations, scoring just 66 points out of 100. As a result,
150,000 lives are lost and $50 billion to $100 billion are needlessly spent
each year.
• Preventive care, too, is underperforming, with only about half of U.S. residents
receiving the recommended care. This lack results in the onset of diseases and
conditions that could have been avoided or at least delayed. Type
2 diabetes is just one example.
• The United States ranks near the bottom on life expectancy and last on infant
mortality. Access to healthcare is unequal, often varying with factors
such as income and racial or ethnic group.
• U.S. healthcare costs are higher per capita than in nations such as Canada
that have universal coverage, ensuring coverage for all. Inefficiencies and duplication
of services are part of the problem, as illustrated by the slow adoption
of electronic medical record systems in the United States.5

What does all this add up to for us as healthcare consumers? Care that is not
optimal when measured against international standards, provided unequally at
ever-increasing cost, and aimed at treatment rather than prevention!
Economics aside, the more distressing reason for poor healthcare is the loss of
the concept of care. The American Heritage Dictionary defines care as “attentive
assistance or treatment to those in need.”6 Today, providing medical services to
consumers is a business-a business that, to the uneducated and the educated
alike, seems not to care at all about the human factors involved in the treatment
of the body and the spirit.

My husband was hospitalized for seven and a half months, six of which were
in intensive care and on life support. My motivation in sharing our experience
is not driven by a desire to lambaste managed care providers or to indict medical
insurance companies. Anyone who remembers how medical treatment was
provided just ten or twenty years ago can only be disappointed with the services
provided today. The healthcare system in the United States today is badly
broken and I, as a consumer, do not know how to fix it.

Given this healthcare environment, every patient runs extreme risks-in part
due to the low level of the type of care that has been historically provided by
nurses. In the spirit of cost containment, hospitals are notoriously understaffed.

I have personally witnessed a 1:16 nurse-to-patient ratio. How can any human
being, even with the best intentions, provide anything beyond the most basic
physical care to sixteen patients? For care partners (formerly known as nurses'
aides), the ratio can be even more lopsided.

A University of Pennsylvania study of 232,000 surgical patients at 168 hospitals
concluded that a patient's overall risk of death rose roughly 7 percent with
each additional patient (above four) assigned to the same nurse's care.7 So, for
example, on the day my husband experienced a 1:16 nurse-to-patient ratio, he
was 84 percent more likely to die.

The same study identified such ratios as a cause of job burnout and dissatisfaction
among nurses. And the consequences add up to a critical nursing shortage,
a problem that is only growing. The Health Resources and Services Administration
(HRSA) projects a shortage of one million nurses by 2020.8 The
U.S. Bureau of Labor Statistics projects the same shortage by 2012.9 Either way,
U.S. hospitals are in trouble. What is behind this nursing shortage? The factors
include:
• Short staffing and work environment. Between 1980 and 2000, nursing ranks
shrank by 20 percent because of mandatory overtime, overwork due to staffing
shortages and rising patient counts, increased stress, lack of support from
hospital management, and other factors affecting the quality of work life.10

• Job dissatisfaction, even among young nurses. Overall, more than 40 percent
of hospital nurses reported dissatisfaction with their jobs. Among those under
30, one out of three was planning a job change in the next year, according
to a study released in the Journal of the American Medical Association.11
• Low pay. Pay is directly tied to the number of nurses found in hospital settings.
As pay stays flat, more nurses choose less stressful environments such
as doctors' offices.12
• An aging and retiring workforce. Nurses are baby boomers, too, and one
survey reported that 55 percent of nurses plan to retire between 2011 and
2020.13 Their average age is rising, too: it was 46.8 in March 2004.14
• Fewer nurses entering the profession. Nursing schools turned away 32,617
qualified applicants in 2005.15

So what does this mean for us? Lower quality of care, longer emergency room
wait times, cancelled elective surgeries due to short staffing, greater likelihood of
mistakes, older nurses with heavier patient loads. Clearly, things are not getting
better. In fact, understaffing is already affecting patient outcomes. Since 1996,
24 percent of hospitals' reports of patient deaths and injuries were affected by
low nursing staff levels, according to a report from the Joint Commission (formerly
known as JCAHO, the Joint Commission on Accreditation of Healthcare
Organizations).16

What about doctors? Today, many doctors are severely overworked because
the only way they can cover their expenses is to take on additional patients.
Why? Because insurance carriers have created the concept of preferred providers,
thereby enabling them to heavily discount doctors' fees (up to 50 percent).
The result is that doctors need to treat up to twice the number of patients they
previously treated to achieve the same financial return. Additionally, Medicare
is not keeping up with the rising cost of healthcare, leading many doctors to
refuse to treat Medicare patients.

And then there are the hospital administrators, who are driven by the numbers
as surely as any CEO in the private sector.

Those who work in the U.S. healthcare system see these problems every day,
of course. But people within a system, even when they hate the system, are often
reluctant to change it-a human fact I have seen countless times in my work
as an organizational consultant. With the status quo, at least people know how
to operate and respond. Anything new requires a new behavior. And that takes
extra effort, something most healthcare providers find almost impossible, given
the stress of their daily workloads. Although most of them might agree in principle
that the system needs changing, that new behaviors are needed, they may
naturally resist change. But as healthcare consumers and patient advocates, we
can push for change, push for that extra effort, and get better care-even in the
current healthcare setting.

That is the subject of this book. Through my own story as a patient advocate-
often painful but always educational-this book illustrates many of
the flaws and dangers of our healthcare system and shows how to navigate it
as safely as possible. Changing the system feels overwhelming and impossible.
So let's assume the status quo and focus on protecting our loved ones and ourselves.
We can do this by taking personal responsibility for minimizing the risks
to the patient due to inadequate care. How do we do this? By adding another
layer of care: by coordinating and/or providing bedside advocacy twenty-four
hours a day, seven days a week. Of course, advocates needn't exhaust themselves
into burnout, ignoring their own needs. Share the responsibility among several
people, as many as necessary for the sake of everyone's health. But I do strongly
recommend the full-time presence of a family member or friend for every patient
in a hospital. I had no previous experience doing this. But as I plunged
ahead, I learned some very important lessons about what it took to keep my
husband alive.

What does advocacy look like? Many advocates have gone before us, and we
can learn from them. Patient advocacy is supported by AARP (formerly known
as the American Association of Retired Persons) and the National Patient Safety
Foundation (NPSF). The first part of this book is tactical, outlining fourteen
key recommendations for patients and their advocates. In many cases these are
lessons I learned the hard way. The second part of this book discusses advocacy
and caregiving from a philosophical perspective; it also offers guidance on handling
the financial matters that often accompany medical care. In the “Lessons
in Advocacy” section you will find the NPSF's “Consumer Fact Sheet: The Role
of the Patient Advocate,” reprinted with permission. The NPSF website, and
the others recommended in this book's “Resources” section, will provide you
with more tools and knowledge to help you step into this new role.

A good first step into advocacy is to set your intention. In my own spiritual
practice, how I do what I do is not nearly as important as setting my intention
clearly and simply. Intention then drives every subsequent step I take on
behalf of my patient. When healthcare workers are faced with a committed
person's intention, they understand. They may not like it, but they understand.
Their response may be very different when faced with a challenge that is not
grounded in intention: in my case, the best interests of the patient. After all,
how can healthcare workers object to what is in the patient's best interest? That
is their job. When in doubt about what to do, lead with your intention.

Follow your intention by educating yourself, acting with courage, taking risks,
and collaborating with family, friends, and healthcare providers-all in service
of full-time advocacy. Without the full-time presence of an advocate for every
patient in a hospital, I believe there is a very good chance mistakes will be made.
Some of these mistakes could cost your loved one his or her life or health. Remember
what the statistics showed us: U.S. healthcare is not optimal, it is provided
unequally at ever-increasing costs, and it is aimed at treatment rather than
prevention. Its systemic problems result in a greater likelihood of mistakes, poor
staff-to-patient ratios, longer emergency room wait times, cancelled elective surgeries
due to short staffing, and so on. These are the very issues we must prepare
to address and prevent on behalf of our patient.

Please join me as an advocate at the bedside. Let your heart and mind be
filled with this simple intention: “everything in the best interest of my patient.”
Remember, we do this for love.

Jari Holland Buck

1 William D. Novelli, “Beyond Fifty: America's Future,” speech given at the City Club of Cleveland,
July 20, 2001, http://www.aarp.org/about_aarp/aarp_leadership/on_issues/aging_issues/a2002-12
-31-novellicleveland.html.
2 Ibid.
3 National Coalition on Health Care, “Health Insurance Cost,” National Coalition on Health Care,
http://www.nchc.org/facts/cost.shtml.
4 Steven Reinberg, “U.S. Health-Care System Scores a D for Quality,” HealthDay News, Sept. 20,
2006, <http://www.medicinenet.com/script/main/art.asp?articlekey=64267>.
5 Ibid.
6 The American Heritage Dictionary of the English Language, 4th ed., s.v. “care.”
7 Linda H. Aiken et al., “Hospital Nurse Staffing and Patient Mortality, Nurse Burnout, and Job
Dissatisfaction,” Journal of the American Medical Association 288, no. 16 (Oct. 23, 2002), http://
jama.ama-assn.org/cgi/content/full/288/16/1987.
8 U.S. Department of Health and Human Services, Health Resources and Services Administration
(HRSA), “What Is Behind HRSA's Projected Supply, Demand, and Shortage of Registered
Nurses?”, HRSA Bureau of Health Professions, http://bhpr.hrsa.gov/healthworkforce/reports/
behindrnprojections/index.htm.
9 American Association of Colleges of Nursing, “With Enrollments Rising for the 5th Consecutive
Year, U.S. Nursing Schools Turn Away More Than 30,000 Qualified Applications in 2005,” http://
www.aacn.nche.edu/Media/NewsReleases/2005/enrl05.htm.
10 Susan Jacoby, “The Nursing Squeeze,” AARP Bulletin, May 2003.
11 U.S. Department of Health and Human Services, Health Resources and Services Administration
(HRSA), “HRSA Responds to the Nursing Shortage: Results from the 2003 Nursing Scholarship
Program and the Nursing Education Loan Repayment Program, 2002-2003,” HRSA Bureau of
Health Professions, http://bhpr.hrsa.gov/nursing/2003NELRPNSPRTC/Chapter2.htm.
12 American Federation of State, County and Municipal Employees, “Low Nurse Wages and Nurse
Shortages: Cause and Effect,” http://www.afscme.org/publications/10951.cfm.
13 American Association of Colleges of Nursing (AACN), “Fact Sheet: Nursing Shortage,” March
2007, http://www.aacn.nche.edu/Media/FactSheets/NursingShortage.htm.
14 U.S. Department of Health and Human Services, Health Resources and Services Administration
(HRSA), “Preliminary Findings: 2004 National Sample Survey of Registered Nurses,” HRSA
Bureau of Health Professions, http://bhpr.hrsa.gov/healthworkforce/reports/rnpopulation/
preliminaryfindings.htm.
15 The American Association of Colleges of Nursing, “With Enrollments Rising for the 5th Consecutive
Year, U.S. Nursing Schools Turn Away More Than 30,000 Qualified Applications in 2005,”
http://www.aacn.nche.edu/Media/NewsReleases/2005/enrl05.htm.
16 U.S. Department of Health and Human Services, Health Resources and Services Administration
(HRSA), “HRSA Responds to the Nursing Shortage.”