When Jari Holland Buck's husband became seriously ill, she stayed by his side and bravely fought for his life. Her steadfast attention to detail-questioning caregivers, researching medicines, and providing a positive, spiritually rich environment for healing-produced a medical miracle: his survival.
The author's vivid experiences form the basis of this guide to becoming a patient advocate. Her life-saving lessons will help you choose the best hospital, develop a partnership with caregivers, prevent medical mistakes, and avoid caregiver burnout. Along with practical advice for enforcing patient rights, executing power of attorney, and avoiding inappropriate hospital charges, the author also explores how to bolster the body, mind, and soul of a critically ill loved one through prayer, positivity, and spiritual healing.
"A must-read for any family caregiver. Jari Holland Buck dramatically brings to life challenges that family members face when a loved one is in the hospital. She proves that with a little knowledge, a lot of love, and by relentlessly asking questions, you can ensure that your loved one receives the best the health care system has to offer and truly become a respected member of the health care team." Gary Edward Barg, Editor-in-Chief of Today's Caregiver magazine
"I found Jari's book the best of the lot. It is written in a way that the reader can envision each crisis clearly. It is a first-hand account of what can go wrong in any hospital. It is not overshadowed by anger but gives a realistic account of the facts. I especially appreciated the checklists she created to help families and patients to not forget the steps that are needed to improve patient safety and the quality of care. I encourage patients, families, and medical professionals to read this valuable book." Douglas Hall, principal PULSE of Florida (Patient Safety Advocate)
|Publisher:||Llewellyn Worldwide, LTD.|
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About the Author
Jari Holland Buck is an Organizational Consultant with more than 20 years experience in retail, wholesale, discount, high technology, manufacturing and service-related corporations. She specializes in leadership and organizational development, team-based interventions, employee involvement strategies in traditionally non-employee involved activities, executive coaching, career consultation and labor/management partnerships.
She founded The Holland Group in 1986 and changed the name to Majestic Wolf Consulting in 2001 to reflect a shift in both personal and professional demeanor.
During her corporate career she held positions in all departments and at all levels of organizations from sales clerk and the first ever female Management Trainee for Montgomery Ward to National Director of Training for Target Stores. As a consultant, her work has taken her to both traditional and creative clients, unionized and non-unionized environments and the public and private sector.
Read an Excerpt
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
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
3 National Coalition on Health Care, “Health Insurance Cost,” National Coalition on Health Care,
4 Steven Reinberg, “U.S. Health-Care System Scores a D for Quality,” HealthDay News, Sept. 20,
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://
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/
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://
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
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/
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,”
16 U.S. Department of Health and Human Services, Health Resources and Services Administration
(HRSA), “HRSA Responds to the Nursing Shortage.”
Table of Contents
A Doctor's Perspective on Advocacy: A View from Above the Bed xi
A Patient's Perspective on Advocacy: A View from the Bed xiii
An Advocate's Perspective on Advocacy: A View from the Bedside xvii
Read Me First, Read Me Often: How to Use This Book xxv
Our Story: One Day, After Lunch 1
14 Key Recommendations
Take Care of Yourself 17
Taking Care of Me 26
Choose Your Hospital with Awareness 29
Gathering Information From/About Your Doctor 40
Gathering Information About Your Hospital 41
Hospital Evaluation 43
Pick the Days of Your Stay Carefully 47
Take Legal Steps to Ensure the Patient's Wishes Are Honored 53
Preparing Legal Documents 60
Read and Use the Patient Advocacy Statement 61
Assume Your Loved One Can Hear Everything, so Speak in the Positive 73
Educate Yourself 77
Ask About Every Medication, Injection, and IV Solution 81
Understand Every Procedure Used or Denied in Treatment 89
Procedure Preparation 97
Keep Track of All Supplies and Services, Warranted and Unwarranted 99
Arrange for 24/7 Coverage 101
Care Team Notebook 105
Take Care of Yourself 123
For a Deeper Understanding
Lessons in Advocacy 131
Lessons in Caregiving 157
Lessons in Money Matters 165
Afterword: Life and Spirit: The Next Six Years 173
Patient Forms 187
Sample Durable Medical Power of Attorney Form 188
Sample Living Will Form 189
Sample Out-Of-Hospital "Do Not Resuscitate" Order 190
Instructions for First Responders/EMS 191
Sample Anatomical Gifts Form 192
Sample Power of Attorney Form 193
Sample HIPAA Waiver 194
Hospital Forms 195
Sample Patient Advocacy Statement 196
Sample Medical Information and Privacy Statement 200