THINGS ARE NOT GETTING BETTER

I had ear surgery about a month ago. The nurse assigned to prep me had been coughing continuously for about 15 minutes and then approached the bed. She reached for the IV kit and I had to stop her in front of several docs and ask her to wash her hands. She complied but apparently, it never occurred to her without my request.

At my follow-up appointment with the MD, he noticed the book website on my business card and asked about it. Following an explanation, he inquired as to how the hospital had performed prior to, during and after my surgery. I shared this experience with him. He replied, "We always struggle with this problem. That's why we have alcohol dispensers outside each room." I responded by saying, "And I'm sure you know that c. diff is not longer sensitive to alcohol." His eyes got big, as in "oops, she got me!" and he has since appointed me to the hospital's Otolaryngology Department's new Medical Advisory Board.

In last month's AARP bulletin, there was an article reporting out the results of a Case Western Reserve VA study:
Routine cleaning isn’t enough to protect you from C. diff. Researchers at Case Western Reserve and Cleveland VA Medical Center found that after routing cleaning at a hospital, 78 percent of surfaces were still contaminated. To kill the germ, you need to use bleach…

One study reported that 39 percent of medical personnel didn’t know that C. diff could be spread on stethoscopes, blood pressure cuffs and other equipment. About two-thirds of medical staff were unaware they should clean their hands with soap and water, because alcohol sanitizers don’t kill this superbug.

What can you do to protect yourself? Insist that everyone treating you clean their hands before touching you.

Clean your own hands thoroughly before eating. Do not touch your hands to your lips. Ask family to bring wipes containing bleach to clean the items around you bed.

When you leave the hospital, assume any belongings you bring home are contaminated. Do not mix clothes from the hospital with the family wash; wash with bleach. Regular laundry detergent does not kill C. diff.

If you are visiting someone in the hospital, be careful about eating in the cafeteria or a restaurant where the staff go in their scrubs or uniforms. These uniforms could be covered in invisible superbugs. More than 20 percent of nurse’s uniforms had C. diff on them at the end of a workday, according to one study.

AARP Bulletin, November 2008

Things are definitely NOT getting better!

CRABBY OLD MAN...

When an old man died in the geriatric ward of a nursing home in North Platte, Nebraska, it was believed that he had nothing left of any value.

Later, when the nurses were going through his meager possessions, They found this poem. Its quality and content so impressed the staff that copies were made and distributed to every nurse in the hospital.

One nurse took her copy to Missouri . The old man's sole bequest to posterity has since appeared in the Christmas edition of the News Magazine of the St. Louis Association for Mental Health. A slide presentation has also been made based on his simple, but eloquent, poem.

And this little old man, with nothing left to give to the world, is now the author of this 'anonymous' poem winging across the Internet.

Crabby Old Man

What do you see nurses? What do you see?
What are you thinking.....when you're looking at me?
A crabby old man, ...not very wise,
Uncertain of habit .......with far away eyes?

Who dribbles his food.......and makes no reply.
When you say in a loud voice.....'I do wish you'd try!'
Who seems not to notice the things that you do.
And forever is losing, A sock or shoe?

Who, resisting or not...........lets you do as you will,
With bathing an d feeding.....The long day to fill?
Is that what you're thinking?......Is that what you see?
Then open your eyes, nurse......you're not looking at me.

I'll tell you who I am,.........As I sit here so still,
As I do at your bidding, ..as I eat at your will
I'm a small child of Ten.......with a father and mother,
Brothers and sisters .........who love one another

A young boy of Sixteen.......with wings on his feet
Dreaming that soon now.......a lover he'll meet.
A groom soon at Twenty,.......my heart gives a leap
Remembering, the vows......that I promised to keep.

At Twenty-Five, now .........I have young of my own.
Who need me to guide ..And a secure happy home.
A man of Thirty, ...........My young now grown fast,
Bound to each other ......With ties that should last.

At Forty, my young sons have grown and are gone,
But my woman's beside me.......to see I don't mourn.
At Fifty, once more, Babies play around my knee,
Again, we know children ......My loved one and me.

Dark days are upon me. My wife is now dead.
I look at the future .............I shudder with dread.
For my young are all rearing......young of their own.
And I think of the years....... And the love that I've known.

I'm now an old man........and nature is cruel.
'Tis jest to make old age look like a fool.
The body, it crumbles..........grace and vigor, depart.
There is now a stone........where I once had a heart.

But inside this old carcass ..A young guy still dwells,
And now and again ......my battered heart swells
I remember the joys........... I remember the pain.
And I'm loving and living.............life over again.

I think of the years all too few......gone too fast.
And accept the stark fact........that nothing can last.
So open your eyes, people ......open and see..
Not a crabby old man. Look closer....see........ME!

AGE DISCRIMINATION IN EMERGENCY TRANSPORT

This was posted online today. The source was HealthDay News (http://health.usnews.com/articles/health/healthday/2008/08/18/older-patients-less-likely-to-be-taken-to-trauma.html)

"Older trauma patients are less likely to be transported to an official trauma center for immediate care than younger patients, a new study found.

The finding was based on a review of a decade's worth of Maryland's statewide emergency medical services (EMS) records. And it suggests that the difference in care first comes into play as patients reach age 50 and worsens again at age 70...

More patients older than 65 were undertriaged, or not taken to a state-designated trauma center, than were younger patients (49.9 percent vs. 17.8 percent).

After adjusting for other related factors, the researchers found that being 65 years or older was associated with a 52 percent reduction in likelihood of being transported to a trauma center. This decrease in transports was found to start at age 50 years, with another decrease at age 70.

'I'm not sure I would call it a bias, because that word has negative connotations, but in general, people do seem to have unconscious blind spots when it comes to the elderly,' said study lead author David Chang. He is an assistant professor in the department of surgery at Johns Hopkins School of Medicine and in the department of health policy and management at Johns Hopkins Bloomberg School of Public Health.

'So not only EMS staff but also those receiving patients at trauma centers are operating on subjective assumptions as to what elderly patients need, how aggressively they should be treated, and what hospitals can do for them, rather than on clear and standard protocol, codes and trauma recommendations,' Chang added. 'And as a result, as patients get older, they are less likely to get into a trauma center.'

Chang and his team reported their findings in the August issue of the Archives of Surgery."

While the author of the study may be afraid to call this discrimination, I'M NOT! I see this same age-related discrimination happening every day in the business world. My job seeking clients over 40 (and even more obviously over 50) absolutely MUST hide any indication of their age in order to even get an interview. Once granted an interview, there is often a statement made about them being "over qualified" as a way of turning them down for the job.

In the workplace, this discrimination occurs typically due to three assumptions:

1. older workers are inflexible and cannot "be controlled:"
2. older workers cost more and we can get the same work done for less; and
3. older workers will have health-related issues that will increase their absenteeism, decrease their on-the-job performance and raise our medical insurance rates.

In the general community, the job of an Emergency Medical Technician or Paramedic is a very emotionally and physically demanding job. I know. I was certified as an EMT in the mid 1970's. In support of my contention that this is a physically rigorous job, in an article entitled, "Physician versus Paramedic in the Setting of Ground Forces Operations: Are They Interchangeable?" (http://findarticles.com/p/articles/mi_qa3912/is_200703/ai_n18755588/pg_4), the author made the following statement - "Paramedics are generally more available than physicians and since their average age... is younger, they are generally more fit."

The average age of a paramedic today is:

1. Oregon Office of Rural Health, 36 - 45 years old (http://www.ohsu.edu/ohsuedu/outreach/oregonruralhealth/providers/upload/2007-EMS-Poster.pdf);
   
2. University of North Dakota - 40.5 years old (http://ruralhealth.und.edu/pdf/remsifs2.pdf);
3. Canada, National Human Resource Review - 37.1 years old (http://www.jibc.ca/paramedic/forms/paraShortage_CallForAction.pdf);
4. University of Western Ontario - 36 years old (http://www.fims.uwo.ca/olr/Apr0407/paramedics.html);
5. A Comparison of Rural and Urban Emergency Medical System (EMS) Personnel: A Texas Study - "The urban EMP,more than rural subjects, was younger (mean = 36
   years)..." and "directors of EMS in urban settings can expect to manage a labor force comprised of married males (mean age = 37.0 years)" (http://pdm.medicine.wisc.edu/Volume14/Chng.pdf)
   

If you review the above averages, you see that they reflect an "average of averages" of about 38 years old, under the age at which discrimination is typically experienced but perilously close to becoming a recipient of that discrimination. My personal experience is that discrimination and change resistance increases at direct proportion to the approach of the discrimination in one's own life. Fear is a clear driver.

More from the article - "A follow-up survey of 127 EMS workers and 32 medical personnel (including doctors, nurses, and medical students) revealed that the top three reasons for not transporting an older patient to a trauma center were: a lack of sufficient training for handling such patients (more than 25 percent); not knowing trauma protocols (12 percent); and potential age bias (just over 13 percent)."

Give me a break! A lack of sufficient training for handling such patients???? Here are the statistics for emergency transport - "In 2003, patients arrived by ambulance for 16.2 million ED visits (14.2%)... Of ambulance-related visits, 39% were made by seniors..." (http://linkinghub.elsevier.com/retrieve/pii/S019606440501989X). That translates to 6,318,000 "senior" transports! Since seniors are the fastest growing age group in the US based on the influx of Baby Boomers, we are in trouble!

As for not knowing trauma protocols, if emergency tranport personnel do NOT know trauma protocols, they should not be emeregncy tranport personnel since that IS their job description!

In a second study published in the same issue of the journal, "a survey from the University of Connecticut School of Medicine found that trauma patients and caregivers alike seem to prefer palliative care, rather than aggressive critical care, if doctors believe that the latter is pointless."

In the seniorjournal.com website (http://www.seniorjournal.com/NEWS/Health/2008/20080818-SeniorsMuchLessLikely.htm), additional information NOT shared on the government web site from the original study includes the following statement, “'The problem of age bias raised in this study may negate efforts to improve clinical care for elderly trauma patients within trauma centers if the system as a whole does not function properly and deliver patients appropriately to needed resources,' the authors write. 'However, it may be difficult to change attitudes of age bias and may require a broad societal campaign.'"

I agree. This study result reveals another symptom of denial in the United States about which I have previously blogged. And, the very fact that the government website did NOT post the statement regarding the need for a "broad societal campaign" is also denial. If we don't address this as a society, not only is our own mortality at risk but so is that of our country.

PREVENTABLE ERRORS NO LONGER COVERED BY INSURANCE!

According to the Journal of the American Medical Association, 2008; 299: 2495-6, there are 8 things that must never happen to you in hospital because, if they do, "health insurers say they will no longer pay out... To give you an idea of the scale of the problem, around 2 million people get an infection every year while staying in an American hospital, and a further 100,000 will die as a result.

The eight ‘no payout’ errors relate to:

1. air embolism
2. blood incompatibility
3. catheter-associated urinary tract infection
4. decubitus ulcer (pressure sores)
5. vascular catheter-associated infection
6. surgical site infection
7. mediastinitis (infection of the chest area)
8. falls and trauma
9. objects left in the body after surgery.
   

And that’s just a start. The Centers for Medicare & Medicaid Services (CMS) are planning on adding a further nine errors, including the hospital-acquired killer infection C. difficile and deep vein thrombosis.

Aside from digging deep into health insurers’ profits, the errors are also going unchecked, and it’s almost as though hospitals and doctors are being rewarded for making them, the CMS believes" (http://www.wddty.com/03363800368870404399/doctor-errors-the-8-things-that-must-never-happen-to-you-in-hospital.html).

Of these eight problems, my husband suffered from five of them (3, 4, 5, 6, 8). Additionally, the "upcoming" denials around "hospital-acquired killer infection C. difficile and deep vein thrombosis" would also have lead to significant cost shifting to us since he contracted c. diff the first month of an 8-1/2 month hospital stay and wore "pressure boots" to prevent deep vein thrombosis for 6+ months. This means that, should his hospitalation have occurred after this ruling, we would be responsible for a sizable chunk of $1.75 million in claims since several of these "errors" occurred more than once, with catastrophic results.

How will the hospitals respond to this?

1. By addressing the issues, with huge costs associated with prevention? I'm doubtful since they have been aware of these preventable mistakes for some time and only the better institutions have done anything to address them. That means the brunt of the exposure shifts to us to prevent the mistakes through our diligence or pay the price in loss of health, life and/or financial stability.
2. By ignoring culpability? Since they maintain the records for every hospitalized patient, I can envision an escalation in battles and delays over record requests and legal wrangling requiring us to "prove" they were the cause. And.if there are no "baseline" records proving our patient did not have the condition upon admission, we are at a loss.
3. By admitting there is a problem (huh!!!) and backing off of both passive and active resistance to advocates? VERY doubtful as admission of responsibility implies a "less than perfect or desirable" institution, something they believe most patients would avoid. I can't even get hospitals to carry my book in their bookstore since it implies their "less than perfect or desirable" status.

Since hospitals today are using a "business model" to guide their practices, let's see what businesses have done when the finger of culpability has been pointed at them?

1. bankruptcy to avoid payout - Enron. "Over the past decade, Enron has been listed for numerous spills of hazardous materials on the Environmental Protection Agency's Emergency Response Notification System Database (EPA, ERNS, respectively). Substances involved in these spills include: natural gas, crude oil, asbestos, arsenic, polychlorinated biphenyls, isobutane, sodium hydroxide, ethane and various other chemical substances. In 1998 Enron subsidiary, Wessex Water, was ranked by the UK Environment Agency as the fourth worst polluter with five prosecutions resulting in total fines of £36,000 ($56,000). Environment Agency director of operations, Archie Robertson said, 'The companies included in our Hall of Shame have let down the public, the environment and their own industry' (http://www.foe.org/WSSD/enron.html);
2. catastrophically slow response and payout - 1989 Exxon Valdez oil tanker spill of more than 11 million gallons in Prince William Sound, Alaska. "What did the company do? According to most observers, too little and too late. The action to contain the spill was slow to get going. Just as significantly, the company completely refused to communicate openly and effectively" (http://www.mallenbaker.net/csr/CSRfiles/crisis03.html). The company is still appealing a $2.5 billion USD punitive ruling, and has not paid any damages yet" (http://en.wikipedia.org/wiki/Exxon_Mobil);
3. "we were just cutting costs" (Union Carbide Pesticide Plant in Bhopal, India in 1984 resulting in "23,000 deaths... In 1989 Union Carbide, which is now a subsidiary of Dow Chemical, paid the Indian Government £470m in a settlement which many described as woefully inadequate. In November 2002 India said it was seeking the extradition of former Union Carbide boss Warren Anderson from the US. Mr. Anderson faces charges of 'culpable homicide' for cost-cutting at the plant which is alleged to have compromised safety standards" (http://news.bbc.co.uk/onthisday/hi/dates/stories/december/3/newsid_2698000/2698709.stm);
4. government culpability and public futility - Love Canal Chemical Waste Landfill site, City of Niagra Falls, NY and Hooker Chemical and Plastics Corporation (now a part of Occidental Petroleum or OxyChem). "Throughout the ordeal, homeowners' concerns were ignored not only by Hooker Chemical... but also members of government. These opponents argued that the area's endemic health problems were unrelated to the toxic chemicals buried in the canal. Since the residents could not prove the chemicals on their property had come from Hooker's disposal site, they could not prove liability. Throughout the legal battle, residents were unable to sell their properties and move away... both the school board and the chemical company refused to accept liability... [and] considerable public resistance from residents within the community: the mostly middle-class families did not have the resources to protect themselves, and many did not see any alternative other than abandoning their homes at a loss" (http://en.wikipedia.org/wiki/Love_Canal);
5. it's apparently cheaper to pay than fix the problems - "For the fourth time in the
   past year, a Resurrection Health Care hospital has been cited for violations and fined by the federal Occupational Safety and Health Administration (OSHA)... OSHA determined "the employer did not ensure that appropriate procedures were adopted to minimize injury and loss of life and implemented in the event of an emergency." As a result of the findings, the hospital received six serious citations and was fined $13,000... The health and safety violations at St. Mary of Nazareth Hospital are just the latest in a recurring pattern at Resurrection Health Care facilities... all [have] been cited and fined by OSHA since 2003. 'The irresponsibility of administrators at St. Mary's and its corporate parent, Resurrection Health Care, endangers both patients and employees,' said Henry Bayer, executive director of the American Federation of State, County and Municipal Employees (AFSCME) Council 31" (http://www.reformresurrection.org/st.-mary-of-nazareth-hospital-fined-for-mishandling-chemical.html). And this is a hospital!!!
   

These are just a few of the examples of business irresponsibility to which we have to look forward in the healthcare industry. I'd like to think that since hospitals are in the business of saving lives, they would not sink this low. However, since they have adopted the business model, we have no assurances...

Bottom line, GET IN THE HOSPITAL ROOM AND STAY THERE, 24/7! Life is too precious to subject it to this risk!

WE WANT WHAT WE WANT!

Here are some new statistics from Deloitte's 2008 Survey of Health Care Consumers:

• 93 percent of consumers say they’re not adequately prepared for future health care costs;
• 79 percent of consumers believe health care will be an important issue in the 2008 election;
• 46 percent described it as one of the top three issues that will affect their vote;
• 34 percent say they would use a retail clinic; 16 percent already have;
• 39 percent say they'd go abroad for treatment if quality was comparable and the cost was cut in half;
• 66 percent either strongly support (36 percent) or might support (30 percent) state-mandated health insurance;
  
• 60 percent want physicians to provide online access to medical records and test results, and online appointment scheduling;
• 1 in 4 say they would pay more for the service;
• 1 in 3 consumers say they want more holistic/alternative therapies in their treatment program;
• 3 in 4 consumers want expanded use of in-home monitoring devices and online tools that would reduce need for visits and allow individuals to be more active in their care;
• 66 percent strongly favor or lean toward state-mandated health insurance;
• 84 percent prefer generics to name-brand drugs;
• 29 percent support a tax increase to help cover the uninsured; another 37 percent say they would consider a tax hike;
• Only 52 percent of consumers say they understand their insurance coverage;
• 1 in 4 consumers maintain a personal health record.
  

According to Paul Keckley, executive director of the Deloitte Center for Health Solutions and co-director of the study, "American's no longer see themselves only as patients, but as consumers who want to take control of their health care,"

I hope so...

HOSPITALIZATION AND YOUR CREDIT SCORE

Last night, while relaxing, I read my monthly (June, 2008) Costco newsletter (The Costco Connection) in which I found the following headline, "Credit Check Could Make You Ill." In it, author and well known consumer credit advisor, David Horowitz, said the following...

"Many hospitals now investigate patient’s personal credit reports to figure out how likely they are to pay their bills. By accessing these credit reports, hospitals are peering at personal lines of credit, payment histories and debts. They say this helps identify which patients to pursue actively for payment because they can, in fact, afford to pay, which helps to minimize losses. They also claim it allows them to quickly identify which patients are eligible for charity care or assistance programs. If a hospital requests the information, be sure to ask them why and whether it’s absolutely necessary. Also, if a problem arises, make sure you ask how the hospital came by the information. By law, hospitals aren’t allowed to turn away patients in an emergency. And public hospitals (as opposed to private hospitals) are often required to give non-emergency care if it is considered medically necessary."

Guess what? I stopped relaxing and felt my blood pressure begin to rise...

I have often wondered why the hospitals in which my husband was treated were so incredibly aggressive in their debt collection practices when they had received virtually full pay from our insurance company on $1.75 million in claims. Finally, here is the answer! They came after us because we could afford to pay the difference!

• Another punishment imposed on working families who pay their bills and use money responsibly.
• Another example of rewarding poor behavior (irresponsible credit users) and punishing good behavior (responsible credit users).

I wish I could say this is atypical but, in my experience, it is not. Take heed, hospital-users. And, do you still think that healthcare is not a business???!?

THE FINAL SAY

In my business practice, I often find myself coaching individuals who insist on having "the final say." They are committed to the appearance and/or actuality of being in charge and often run their own company. Few, if any, apply this commitment to their personal life as it relates to end-of-life planning, even though this would preserve their right to have "the [FINAL] final say!"

Each year, we honor April 16th as National Healthcare Decisions Day. Healthcare decision documents are known by many names including:
• Durable Medical Power of Attorney - states that a designated person has the legal right to make healthcare decisions for me, should I become incapacitated;
• Living Will - specifies that extraordinary efforts not be used to prolong my life should I become terminally ill or unable to regain a meaningful quality of life;
• Power of Attorney - specifies the legal right to make non medical-related decisions for an incapacitated person, are necessary;
• Advanced Directives - a combination of the above documents;
• HIPPA Release Form - states that I understand the materials or data I am requesting will be released without protection by Federal Privacy Protection Regulations and includes a "hold harmless" statement.

I always send an email to my colleagues and friends on this day asking the following questions:
• Do you have an executed Durable Medical Power of Attorney?
• How many copies do you have and where are they stored?
• Who else has a copy?
• Are you confident your appointed healthcare agent will act as you wish rather than as they wish?
• Have you discussed your end-of-life wishes with this individual?
• Do you have a Living Will?
• Have you specifically addressed the issue of pain management as we must assume the pain stimulus is still present? (reference Oxford Textbook of Palliative Medicine, 2nd ed. 1999, pages 982-989)
• How many copies do you have and where are they stored?
• Who else has a copy?
• Does your primary care physician have a copy in your file?
• Does your primary care physician know how to reach your appointed healthcare agent?
• Have you discussed your end-of-life wishes with your primary care physician?
• Have you discussed end-of-life wishes with your family and loved ones?
• Do you have an executed HIPPA Release Form?
• How many copies do you have and where are they stored?
• If you are a DNR ("Do Not Resuscitate"), is your form in order, executed by your doctor and posted in a prominent place in your home? (the refrigerator door is commonly used)

These are not pleasant or easy issues to confront and there are no "right" answers, just "your" answers.

No one wants to believe anything bad could happen to them, the very issue that confronted the spouse and parents of Terri Schiavo, who at age 27, suffered a cardiac arrest, that lead to brain damage due to lack of oxygen. Her case went to the Supreme Court because she lacked these documents. Regardless of what course of action you believe should have occurred, the fact remains that this painful experience could have been totally avoided by her family and the county had she executed these two documents. Most importantly, all would have known that what was done was what she wanted.

Why do I feel so passionate about this subject? Although my husband survived catastrophic medical events during a 7+ month hospital stay, I entered his medical nightmare as "just a spouse," not as a person who had Durable Medical Power of Attorney. Talk about a case of the cobbler's children not having shoes! I was married to an attorney, who refused to deal with legal issues such as a Durable Medical Power of Attorney and a Living Will because "it was too upsetting to think about them."

It has been my experience that you run into two types of healthcare providers—
• those who appreciate your knowledge and wish to partner with you and
• those who do not.

The real need for these documents occurs when you deal with the latter as I did in each of the four hospitals in which my husband was treated. Keep in mind that HIPAA privacy laws make it extremely difficult, if not impossible, for you to access patient information as an advocate without a Durable Medical Power of Attorney. When someone we care about is hospitalized, we are under enough stress without having to take on this additional burden.

DO THIS NOW! Don't put it off! If you need copies of these documents, here are three sources:

1. go to http://www.uslivingwillregistry.com/forms.shtm
2. go to a local hospital and ask the Legal or Patient Advocacy office for state-compliant forms;
3. visit http://www.caringinfo.org/stateaddownload and download free state-specific advanced directives.

A quote by Roy Walsh, psychiatry professor interviewed in The Search For Meaning by Phillip L. Berman, may explain how we continue to feed our denial. "You can see that basically our lives are, to a large extent, spent in avoiding confrontation with ourselves. And then you can begin to make sense of the enormous amount of our culture's daily activities, which attempt to distract us from ourselves, from deep reflection, from deep thinking, from existential confrontation. There's a wonderful phrase by the philosopher Kierkegaard, 'tranquilization by the trivial.' And I think our culture has mastered this better than any culture in history, simply because we have the wealth and means to do so."

Regardless of our cultural conditioning, I believe avoidance of this subject is also a direct result of fear:
• fear of the unknown;
• fear of talking about death;
• fear of the act of death;
• fear of reactions to our conversations

and on and on. Christian Nestell Bovee states, "We fear things in proportion to our ignorance of them." If true, then merely having these conversations and making these decisions should calm some of our fear. Not only are you doing yourself a service, you are sparing your family the agony of one of life's greatest and most difficult decisions.

You are also ensuring that you have "the [FINAL] final say!"

ON YOWN OWN BEHALF...

What five tips would you have for women to get the best possible health care possible and feel empowered with doctors?

1. Recognize that medicine is considered BIG business today and treat it as such. If you hire a contractor to do something for you in your home, you are paying their bill, directing their attention to your need(s) and requiring them to satisfy you in order to be paid. As such, you are the boss of that contractor. The same goes for a medical provider, whether that provider is a doctor, nurse, hospital, care giver or care facility. You are their boss. They work for you because you pay the bill. Therefore, they have an obligation to “satisfy” you regarding how you are treated. Unlike a contractor (for example, a plumber), they cannot always guarantee the outcome. But they can and should treat you in a way that enables you to learn what they are proposing and why. You have the right to expect good treatment. Anything less, dishonors you.

2. Do your homework! Recognize and give yourself permission to not understand everything you read. Anything you take away from your research gives you greater credibility. Research your:
• disease or condition;
• doctor(s);
• hospital and/or care facility;
• medication(s);
• recommended treatments and side effects.
Many times our powerless feelings are directly related to how much we know. By doing your homework, you will be more comfortable asking questions and the medical community will know they have an educated consumer and treat you as such. If they do not, find another care provider. You have a right to get answers to your questions. If your plumber refused to tell you what they were going to do, why and how much it would cost, wouldn’t you look for another plumber?

3. Propose a partnership with your doctor and tell them what that means to you. They are (or should be) practicing “patient-centered” medicine. That means that, as a patient, we must understand what is going on and participate in decision making. We can no longer afford to be passive and turn these decisions over to another. There are too many problems in and complications with healthcare. If your doctor:
• does not have time for questions;
• cannot or will not explain about your -
− disease or condition;
− medication(s);
− recommended treatments and side effects and/or
will not discuss
− his/her experience in treating it;
− why s/he is recommending a particular hospital and/or care facility,
find another doctor. You have a right to understand the proposed treatment.

4. Be prepared to explain all your present medical conditions and identify all your medications when you interact with the healthcare community. I recommend you create and carry with you at all times a document that lists the following:
• contact information;
• emergency contact and his/her information;
• known allergies;
• current medications, doses and frequency;
• current medical conditions;
• primary care physician and contact information;
• preferred hospital for emergency transport;
• insurance information;
• identify the existence of a Durable Medical Power of Attorney and/or Living Will and/or Advanced Directives.
If your purse looks like mine, you may wonder how all this will fit! You can shrink this information down to an 8-point font and fit it on a portion of a single piece of 8-1/2 X 11 inch paper. Place it where emergency personnel will find it easily and keep it current! When you visit a doctor, simply remove it from your purse and hand it to the intake person. You can’t believe how many, “WOW’s!” I’ve received using this procedure. Those “WOW’s” tend to open doors with doctors because, you are treating them as a professional by being medically professional yourself.

5. Be respectful and firm. The doctors with whom you are dealing have made a lot of sacrifices to appear in front of you today. They are well educated and it is this very education and knowledge that you seek. If you do not get an answer to your questions or receive an answer you do not understand, ask the doctor to explain it again and again until you understand. Many doctors are not used to this insistence and we have to train them. In many ways, this is the same method we use with our children. If our children do not do what we want, we encourage and/or consequent them until they do. If we allow doctors to avoid answering our questions, we are reinforcing bad behavior as well as our own poor self-esteem.

The saying, “Do onto others as you would have them do onto you” fits both sides of the patient/doctor interaction. Everything recommended here requires that you step into your power and take action. When we take action, we feel less anxious and begin to know that we have done everything we can on our own behalf. That’s called, “Living.”

Martha Graham, one of the best-known teachers and choreographers of modern dance, says it like this…
There is vitality, a life force, a quickening
That is translated through you into action,
And because there is only one of you in all time,
This expression is unique.

And if you block it,
It will never exist through any other medium
And be lost.
The world will not have it.
It is not your business to determine how good it is:
Nor how valuable it is: nor how it compares with other expressions.
It is your business to keep it yours clearly and directly,
To keep the channel open.

You do not even have to believe in yourself or your work.
You have to keep open and aware directly
To the urges that motivate you.

Let them motivate you on behalf of your own health!


© Jari Holland Buck - 2008, On Your Own Behalf

RESEARCH YOUR HOSPITAL

As good, compliant patients, we are accustomed to simply agreeing with the hospital recommended by our doctor without thinking. You need to THINK about it! In fact, you need to research every hospital prior to admission, unless you are in an emergency situation. HealthGrades, an organization that conducts research on hospitals and doctors and posts their results online, just released the following statement -

"Patients treated at top-performing hospitals were, on average, 43 percent less likely to experience a medical error compared to the poorest performing hospitals, according to HealthGrades' fifth annual Patient Safety in American Hospitals Study. The study, released this month, analyzed 41 million Medicare patient records from nearly all of the nation’s 5,000 non-federal hospitals.

HealthGrades researchers found that patient safety incidents cost the federal Medicare program $8.8 billion and resulted in 238,337 potentially preventable deaths during 2004 through 2006.With the Centers for Medicare and Medicaid Services scheduled to stop reimbursing hospitals for the treatment of eight major preventable errors, including objects left in the body after surgery and certain post-surgical infections, starting October 1, the financial implications for hospitals are substantial."

Th full report on this study is available as a PDF download free from http://www.healthgrades.com/

FAILURE TO COPE

“There are only four kinds of people in the world: those who have been caregivers; those who are currently caregivers; those who will be caregivers; those who will need caregivers.”

— Rosalynn Carter

We come to the work of caregiving without any training on how to be an advocate for our loved one OR how to care for ourselves while we do this. Since this is sacred work, it requires a connection to our self, our loved one, our families and friends, the healthcare community, our Higher Power and the universe. Many of us don’t understand this need or know how to expand our world in the midst of a medical crisis. Whether you are a seasoned or beginning caregiver, it is easy to set aside your own needs for another. No one wins when we do this.

Caregivers, by the very nature of their work, tend to be isolated and uncertain about whether they are “doing the right things” for their loved one. Additionally, while adults are provided many models about how “not to do” something, we receive little to no guidance about what “right” looks like!

While I was a successful advocate for my husband during his protracted illness and hospitalization, I was an unsuccessful caregiver. What do I mean? I didn’t pay attention to the first and last recommendations in my book, Take Care of Yourself. It was only after five years of solo caregiving that I took stock of my own health and discovered:
• 100 extra pounds on my body in all the wrong places;
• high blood pressure that was not being controlled by three medications;
• extremely high triglycerides; and
• metabolic syndrome, a precursor to diabetes.

In order to address these urgent health issues, I had to completely remove myself from any caregiving and focus solely on myself, the result of which was a divorce. While I am much healthier today, in retrospect, I know now that my failure to attend to my own issues is very common among caregivers.

Today, my now ex-husband l and I are renegotiating our relationship as we finally acknowledge that we are no longer the same two people that entered the hospital almost seven years ago. How were we different?
• Bill was physically debilitated and mentally impaired. He expected “full” recovery in spite of being told otherwise. I other words, “my husband survived, the man I married didn’t.”
• I had terrible PTSD, jumped at any and every sound and was so hypervigilent that there was no humor left in me. And, truth be told, I was now used to being totally in charge.

Bill’s illness created his differences. I created mine. How did we get here? While Bill was hospitalized, I had nursing help to care for him. He was monitored 24/7 and someone else cared for the house. Once I brought him home, there was no help and I asked for none. I thought I could do it all. No machines monitored him, I did. I heard him begin to seize from another part of the house when he fell off the bed. I knew he was running a fever again when I thought to check it.

I took care of house, pets, finances (including $1.75 million in medical expenses), scheduled and transported him to copious medical appointments, managed prodigious amounts of complex medications, modified the house to accommodate his disability, carried his wheelchair everywhere, pushed him up the steps, required him to accept accommodations (like a gate belt) that he philosophically didn’t believe he needed. His resistance to this accommodation resulted in Bill falling and breaking his feet 3 times.

What is the difference between a healthy caregiver and a loving family member? Unless a family member approaches caregiving with a commitment to care for their own health FIRST, they will become an unhealthy caregiver and potentially, in the case of marriage, a soon-to-be ex-family member. How does this happen? I went from loving wife to mother to jailor. I did this, not him. While my intentions may have been laudable, my actions were based on fear, fear that he would “die” on my watch. Clearly there was a little ego in my actions, as well.

Mary Robinson Reynolds named my failure this way, “If a chick is helped out of its shell, it will die. If a butterfly is helped out of it’s cocoon, it will die. The gift, or the service you can provide to humanity is to let the struggle take place, as with your own struggle to not over-do or over-give for people. Miracles happen when people get so in touch with their desires that they start asking for what they want. When they do this, they start sending new vibrations out. Miracles happen when we decide it’s OK to not struggle or suffer any more. There is nothing valiant about suffering.” And I suffered because I did not ask for what I wanted. I did not ask for help… I struggled with where Bill ended and I began. And today, I know that what I experienced is normal and I have forgiven myself for my failure to cope.

If you have any doubt about the “normalcy” of my failure to cope, consider these statements from experts in the field.
• Suzanne Mintz, president and co-founder of the National Family Caregivers Association, states that “Spousal family caregivers' risk of depression is six times greater than that of non-caregivers... And, they are less likely to reach out for help... To protect their health… family caregivers to spread the work load. Caregiving is much more than a one-person job... Often… caregivers do not want to ask for or take help..." (2/10/08 HealthDay News).
• Adults who care for a sick or disabled family member “often have medical problems of their own, lack health insurance and are stressed by medical bills. 45 percent of the caregivers have one or more chronic health problems, compared to 24% of those who are not caregivers. It looks like they are having a difficult time." (8/24/05 HealthDay News).
• "The added responsibility that someone has after a loved one leaves the hospital can lead to feelings of isolation, increase depression, and make them not eat as well as they should," explained lead researcher Dr. Lori Mosca, director of preventive cardiology at Columbia University Medical Center in New York City.
“Depression often helps boost the health risks associated with caregiving... In fact, measures of psychological strain were significantly higher among study participants with depression and low social support, she said. We don't know if high caregiving strain leads to depression, or if depression increases the sense of strain." (3/12/08 HealthDay News).

What did I learn from my caregiving experience?
1. Nobody is super man or super woman. We all have feet of clay and need help when we move into situations like this that are so far outside our experience base.
2. There are organizations that can help you sort through these issues. Check out www.hospitalstayhandbook.com for a list.
3. Caregiving statistics repeatedly predict the pattern I experienced, with the same outcome - death of relationship and/or disability/death of care provider.

What can I share with others who have or will experience caring for a family member or friend? If you take apart the word, “stress,” from which we surely suffer, there are answers for us all.
S Support system; friends, family, healthy people
T Talk; self-talk, talk with others
R Rest, relax; practice deep breathing, visualization
E Exercise; do something physical to relieve tension
S Self-care
S Stay in the present; avoid “what ifs?”

These suggestions are just the beginning. There are many more things you can and should do for yourself.

According to Dr. Martha Daviglus, a professor of preventive medicine and medicine at Northwestern University, Chicago, and a spokeswoman for the American Heart Association, “The link between caregiving and increased cardiac risk seen in the study was predictable, … We see the same burden in caring for someone with any kind of serious disease." (3/12/08 HealthDay News).

Whether it is a physical or emotional “broken heart,” all caregivers suffer. There are thousands of books and articles on this problem and yet, caregivers continue to struggle. I am not so blind as to believe any story will save the day. If, however, I reach one of you who struggles, with love, to care for another, it is enough. Be kind to yourself. Stop judging the inadequacy of your efforts. You are not failing your charge, just yourself.

Roderick MacIver, artist and founder of Heron Dance says the following. I agree. “We each have a spiritual current that runs through our lives--a river. Connected to that current, our work, our life, has power… When you turn your back on the current of your life, you are on your own. You are coming at life believing that you are strong enough, powerful enough on your own… Being in touch with the spiritual current means first being able to listen to oneself, being in sync with oneself. Work of the spirit requires strength of spirit.” (Heron Dance, Issue 13, 1996).

And strength of the spirit requires a connection to our self. Check in with that beautiful face staring back at you in the mirror…

THE "GOOD" VISITOR

What should visitors know about visiting a patient in the hospital?

1. Do not come to the hospital if you are sick. This includes diarrhea. Patients already have compromised immune systems due to their injury, illness or surgery. They also have to “fight off” hospital-acquired infections to which they are exposed such as MRSA (Multi-Resistant Staphylococcus Aureus) and C. diff (Clostridium Difficile). If you are ill, send your presence in spirit, by phone, through friends or prayer.
2. Wash your hands for at least 20 seconds with soap and warm water before entering any patient room and upon leaving any patient room. Hand sanitizers are not enough! According to the Mayo Clinic, “Alcohol-based hand gels, which are commonly used in healthcare institutions, may not effectively destroy C. difficile spores.” There are many, many risk factors associated with these and other hospital-acquired infections, risk factors that involve hospital procedures and personnel, building environmental factors as well as factors surrounding severity of illness. While hospital attention to minimizing risks can play a big role in the frequency of hospital-acquired infections, these are things over which we have no control. We do have control over our our efforts, efforts which serve both the patient and the visitor. Therefore, scrupulous hand washing by everyone is your only hope for protection.
3. Sanitize the bottom of your purse or bag as well as the bottom of your shoes before contact with anyone following a visit to the hospital. Also, change out of and launder any clothing that may have touched the patient such as a tie. Do so before you enter your home or the patient’s facility. MRSA lives on skin and survives on objects and surfaces for more than 24 hours. C. diff spores survive up to 70 days. Infection rates continue to increase, as do deaths from hospital-acquired infections. This is especially important if you live with someone or visit someone who is:

• immune-compromised;
• on kidney dialysis;
• struggling with a serious underlying illness such as inflammatory bowel disease or colorectal cancer;
• taking antibiotics or over-the-counter antacids;
• recovering from abdominal surgery;
• recently discharged from a hospital; or
• living at an extended care nursing facility.
  

What top 3+ things should hospital visitors leave at home?

1. Complaints. You are there to support them. Having an upsetting conversation with doctors or family members in the presence of your loved one, even when they are heavily sedated, can have extremely negative consequences. So can whispering when the patient believes something is being withheld. State everything in the positive.
2. Plants and flowers for ICU patients. They are not allowed as they grow mold and some patients have allergies to them.
3. Questions about the patient’s condition. Use the services of www.caringbridge.com. The purpose of this organization is to allow all friends and family with Internet access updated on the condition of the patient and needs of the family. With the assistance of caringbridge.com, the family can set up a blog and make comments/requests as well as expressions of gratitude. There is no reason 24/7 advocacy needs could not be placed on this blog, asking for assistance. These postings eliminate the need for the family to personally contact everyone in their network whenever there is a change. It also gives those friends and loved ones who have an interest in specifics the information they crave without bothering the family.
   

What top things can families or visitors do to improve the “care” of any hospitalized patient?

1. Ensure that someone is with the patient, in the room, 24/7. This means twenty-four hours a day, seven days a week. The patient needs a guardian. Maintain that post or pass it to someone else. This is especially true in Intensive Care. A-W-O-L could mean D-E-A-D.
2. Ask the patient if s/he has executed a Durable Medical Power of Attorney and a Living Will, also called Healthcare Directives. If not, help the patient complete them. If you need copies of these documents, go to the Legal or Patient Advocacy office in the hospital secure the forms. No one wants to believe anything bad could happen to them, the very issue that confronted the spouse and parents of Terri Schiavo whose case went to the Supreme Court because she lacked these documents. Regardless of what course of action you believe should have occurred, the fact remains that this painful experience could have been totally avoided had she executed these two documents. With these documents in place, everyone including the medical community, will know the desires of the patient. This action spares the patient’s family from the agony of one of life’s greatest and most difficult decisions. Place copies of each document in the Care Team Notebook and give a copy to the legal department of the hospital.
3. Create a Care Team Notebook. By asking friends, neighbors and family to assist in advocacy, you not only reduce the family‘s personal burden but also benefit from “new eyes.” This notebook will passively “coach” advocates in what should be observed and, as necessary, negotiated with hospital care providers. In order to stay organized and keep track of everything, set up this Notebook prior to or immediately upon hospital admission if your patient’s stay is expected to be anything more than a short, overnight visit! In that way, you are ready to request help whenever well-meaning and caring individuals ask what they can do. It should include:

• Sign-up Sheets – in which you place a sheet of paper for each day with four-hour shifts. Make sure that you do NOT have a change in personnel at the same time there is a shift change at the hospital! This is a particularly vulnerable time for your patient and you want to ensure the uninterrupted presence of an healthcare monitor;
• Doctor Visits – in which you ask each care team member to record every doctor visit/outcome that occurs during their shift;
• Procedures – in which you ask each care team member to record any procedures done and the expected and actual outcomes;
• Notes – in which you ask each care team member to record any observations during their shift;
• Questions – in which each care team member lists any questions they have for medical personnel for future shifts;
• Outside the Hospitals Tasks and Chores – in which you list things that need to be done to keep your family and household functioning, divided into categories such as personal care for your loved one, transportation, household chores, childcare, etc.;
• Legal Documents – including a copy of the Durable Medical Power of Attorney and Living Will; and
• Emergency Contact Information – for the family, the advocate(s), for the trusted medical advisors as well as for key medical personnel. For downloadable forms, visit www.hospitalstayhandbook.com.

How can families/friends better coordinate hospital visits?

1. Honor the visitation hours and policies, especially in the Intensive Care Units (ICU’s). Visits should be staggered and not exhaust the patient. There are good reasons for limiting the number of people in the patient’s room at any one time.
2. Ask the assigned advocate to manage the flow of visitors. Have visitors contact the advocate ahead of time and determine when the best time is to visit. Patients get tired, even when there is not a lot of activity. So do family members who have to answer questions over and over again.
3. Find out when nursing shifts change and procedures are scheduled and avoid these hours. Some hospitals/units even disallow visitors during these vulnerable periods of time.
   

What top things can families or visitors do to make hospital staff jobs easier?

1. Offer to assist the nursing staff. There is a tremendous shortage of nurses that is only going to get worse as “baby boomer” nurses continue to retire. Many things can be done by a visitor to assist the nurse such as securing bedding, running errands for the staff or patient, filling water pitchers, assisting with patient food intake, notifying the nurse when alarms sound (do NOT touch the equipment!), securing supplies, etc.
2. Give the family members a break! They get tired and crabby, too, making the nurse’s job harder to handle. Do not step into this role without learning what needs to be done or attended to while you are taking the family member’s place if they are operating as the advocate.
3. Learn to speak “hospital” speak, even just a little. Machines have names. So do nurses. Doors will open—with the doctors, with the staff and with the patient, who will want to understand what is happening or what has happened to him or her. Calling people and things by their right name supports speedy and compassionate care.
   

Any other hospital visitation dos and don'ts?

1. Take care of yourself. You are of no value to a family member or friend if you go down for the count. Sacrificing your own health for another is not what anyone who loves us would want us to do. Drink lost of water before and after your visit.
2. Manage your own stress, about the patient as well as about your personal fear of hospitals, disease and death. If you can’t, don’t visit. World-renown shaman, Sandra Ingerman, says that “All healing is done by creating space from the heart. Anxiety occurs when you are in a state separate from spirit. If you can’t get emotionally detached, you can’t let spirit through.” This cannot be done when you are operating out of or spilling fear.
   

WEEKEND ADMISSIONS

Today in HealthDay News, the following article was posted...

Your chances for surviving a cardiac arrest are 13.4 percent worse if you are admitted to the hospital on the weekend versus a weekday, according to new research.

Even after taking into account factors such as hospital size and location and the person's age, gender and other illnesses, the lower survival rate remains the same.

"A higher death rate among patients admitted on weekends may be due to lack of resources for treating cardiac arrest," study author Richard M. Dubinsky, of the University of Kansas Medical Center in Kansas City, said in a prepared statement.

The findings come from researchers analyzing a national database containing a 20 percent sampling of all U.S. hospital admissions for cardiac arrest from 1990 to 2004. The analysis included 67,554 admissions. During cardiac arrest, the heart slows or stops working, and brain death can occur in just four to six minutes.

In my book, I talk about the risks of nights, weekends and holidays. Now we have proof!

SHIFT HAPPENS...

“Shift Happens” has been posted on the wall of my office for many years. As a change management consultant, I placed it there as a reminder that the work I do within organizations and with executives occurs, oftentimes, at a snail’s pace. Frequently, I have to recall that this is NOT about crossing things off my “To Do” list, as so many corporate planners would have me believe…

Never in a million years would I have believed that I would play a role in “Shift Happening” within the healthcare system. But then, paradigm pioneers, as the business guru, Joel Barker, would call us, rarely set out to “change the world.” We simply “see” things happening and try to understand what, if anything, we can do to address them.

That is exactly what I set out to do when my husband, Bill, got sick. He went from “vertical” to “horizontal” in less than 12 hours, spending 6-1/2 months in four different hospitals, 5 of which were on full life support. My story in NOT about what happened to him but rather, about the "Shift that Happened” to me while caring for him inside today’s healthcare system.

Early in his disease, I decided to stay at the hospital, 24/7. He was so catastrophically ill that we faced daily, sometimes hourly, crises as every organ in his body failed, some more than once. In order to understand what was happening, I watched everything, asked lots of questions, did research and took lots of notes. All of these actions helped, but none more so than my 24/7 presence. I began to understand the different types of things that occurred during
• the days vs. the nights
• the weekdays vs. the weekends
• non-holidays vs. holidays
• routine shifts vs. shift changes.

I observed and noted when family members of other patients were present and when they went home. I also watched the patients of those family members die in their absence on more than one occasion. The patient families around Bill and I were present during “typical business hours,” early weeknights and for short amounts of time during the day on weekends. My experience bore out the following:
• the most “seasoned” nurses typically worked during “typical business hours,” 8:00 a.m.–5:00 p.m. These in demand nurses are usually the ones with the most tenure and choose their schedules. Seasoned, however doesn’t necessarily mean “the best;”
• less “seasoned” nurses worked on nights, weekends and holidays;
• staffing shortages frequently occurred on nights, weekends and holidays and errors went up when there were “temps” in the nurse positions. They didn’t always know the hospital protocols or who to go to for help;
• fewer nurses were available on nights, weekends and holidays;
• fewer care partners (nurse’s aids) were present on nights, weekends and holidays;
• fewer doctors were in the hospital on nights, weekends and holidays;
• in private hospitals, the doctors that were present on nights, weekends and holidays were frequently the partners of the treating physicians (often, not my choice in care providers), acting in a “substitute” capacity. In public hospitals, the doctors that were present on nights, weekends and holidays were a resident that, according to Wikipedia, are a “physician who has received a medical degree or diploma… and is composed almost entirely of the care of hospitalized or clinic patients, mostly with direct supervision by more senior
physicians… during which the physician is trained in a sub-specialty” [http://en.wikipedia.org/wiki/Residency_(medicine)]. Neither set of doctors knew Bill’s case nor were they willing to make treatment interventions. They were most likely to stabilize or to put stuff off until their partner or supervising physician could come in. And, in the case of the residents, they were “learning” on my husband;
• medication problems more often happened on nights, weekends and holidays; and
• medication problems went unresolved more frequently on nights, weekends and holidays.

During nights, weekends and holidays, I observed and involved myself actively in the following events:
• Bill’s primary IV line was pulled out by a rotating bed and he was without three medications that were keeping him alive for 4 hours while I fought with the “head” nurse to bring in the specialist needed to reinsert the line;
• Bill was denied kidney dialysis due to an “equipment shortage;”
• the pharmacy, on three separate occasions, did not have his prescribed medication and the Pharmacy Manager had to wait until morning to “order” it from someplace else;
• Bill experienced a 16:1 patient to nurse ratio for 12 hours, 2 of which the nurse was off the floor due to a patient code;
• nurses who were not accustomed to caring for Bill and his complex medical situation tried to give him his medications by mouth three times while he was NPO = nothing by mouth.” Had they succeeded, his disease would have re-started and he would have died;
• family members were “mugged” entering or leaving the hospital;
• personal items were stolen from patient’s rooms;
• Bill was denied the rotating bed that helped him avoid bedsores;
• medication had to be couriered from another local hospital during an emergency because of a shortage in the hospital where Bill was a patient;
• three out of Bill’s four codes occurred at night and were handled by (fortunately, very competent but “luck of the draw”) agency nurses who were not employees of the hospital;
• a nurse “forgot” to give Bill his routine pain medication because she was not accustomed to the method in which it was being delivered;
• the partner of the treating cardiologist during his first visit with Bill told me that he had been “misdiagnosed” and preceded to offer a “new” and terrifyingly dire diagnosis that was wrong and unsupported by the facts;
• a monitor alarm was mis-set, allowing Bill to slip into sinus ventricular tachycardia (SVT) without the nurse being alerted. I had to notify her;
• a 10-minute delay in response to an ICU alarm during a shift change that required me to stand outside Bill’s room, gowned, gloved and masked and holler at the top of my lungs for assistance.

Do you think there is any corollary to these observations and experiences and the absolute fact that hospitals recommend that we, the family members of their patients, go home, get some sleep and care for ourselves during nights, weekends and holidays? I DO and so should you!

What can we do to change the healthcare system today? As family members and advocates, we represent a huge force with whom the healthcare system must eventually reckon. However, will that happen soon enough for you and your loved ones? The choice I made was a simple one – care for my husband. When the surgeon to whom we attribute his survival visited Bill, Bill thanked this skilled physician for saving his life. What was this doctor’s response? “I didn’t save your life. Your wife did.”

How did I react to this information? My 24/7 commitment grew stronger every day until I finally brought Bill home. Yes, he survived against staggering odds. Yes, without the skilled and dedicated healthcare workers’ expertise and caring, Bill would never have made it. But, if I had to choose what caused Bill to survive at an emotional level, I would have to pick the 24/7 presence of his family. And that presence during nights, weekends, holidays and shift changes can and did cause the healthcare system to “function” differently. Why? Because I required that they treat me as part of the healthcare team.

Changing healthcare as a whole is simply too overwhelming for most of us to even consider. However, if, one-by-one, we make our presence known and do not capitulate to the apparently well-meaning requests to “go home,” we are a formidable force on behalf of our loved ones and cannot be ignored. Clarissa Pinkola Estes says it best. “In any dark time, there is a tendency to veer toward fainting over how much is wrong or unmended in the world. Do not focus on that. There is a tendency too to fall into being weakened by persevering on what is outside your reach, by what cannot yet be. Do not focus there. That is spending the wind without raising the sails. We are needed, that is all we can know. And though we meet resistance, we more so will meet great souls who will hail us, love us and guide us, and we will know them when they appear. Didn't you say you were a believer? Didn't you say you pledged to listen to a voice greater? Didn't you ask for grace? Don't you remember that to be in grace means to submit to the voice greater?” (http://www.ahpweb.org/articles/donotloseheart.html)

As a change management consultant, I know “I am responsible for the input. I am not responsible for the outcome.” As a family member, I know I only want what is best for my family. I ensure my input is included and that my hospitalized family member receives the best possible treatment with the 24/7 presence of someone who cares, even in the face of resistance by the healthcare community. Nights, weekends, holidays and shift changes are risky times for hospital patients. Doesn’t it make sense that we stand guard against that risk?

Our journey and the journey of healthcare in the United States runs parallel and we are the agents of change, but not unless we step into our power. That is always how Shift Happens!

NATIONAL HEALTHCARE DECISIONS DAY

This is your public service message for the day...

April 16th is National Healthcare Decisions Day. Do you have an executed Durable Medical Power of Attorney? Do you have a Living Will? Have you discussed these issues with your family and loved ones? These are not pleasant or easy issues to confront and there are no “right” answers, just “your” answers.

No one wants to believe anything bad could happen to them, the very issue that confronted the spouse and parents of Terri Schiavo whose case went to the Supreme Court because she lacked these documents. Regardless of what course of action you believe should have occurred, the fact remains that this painful experience could have been totally avoided had she executed these two documents. Most importantly, all would have known that what was done was what she wanted.

DO THIS NOW! Don’t put it off! If you need copies of these documents, here are three sources:

• go to http://www.uslivingwillregistry.com/forms.shtm;
• go to a local hospital and ask the Legal or Patient Advocacy office for state-compliant forms;
• if you are a Kansas or Missouri resident, contact me at jari@majesticwolf.com and I can forward you sample forms.

Keep in mind that HIPAA privacy laws make it extremely difficult, if not impossible, for you to access patient information as an advocate without a Durable Medical Power of Attorney. Not only are you doing yourself a service, you are sparing your family the agony of one of life’s greatest and most difficult decisions.

NIGHTS, WEEKENDS AND HOLIDAYS

This past week, there were a number of news stories highlighting an article posted in the February 20th issue of the Journal of the American Medical Association. In it, researchers verified that "hospital patients who have the misfortune of suffering cardiac arrest [and stroke] at night or on the weekend are less likely to survive than those who have a heart attack during weekdays or weekday evenings... The immediate cause of poor survival on nights and weekends may be one of timing: either there is a delay getting critical procedures or a delay in diagnosing the cardiac arrest in the first place. 'We're literally talking about a difference in seconds, which makes a significant impact,' said Beth Mancini, associate dean of Undergraduate Nursing Programs at the University of Texas at Arlington. "It's time for hospitals to look critically at their processes'... Overall survival was 14.7 percent for nights/weekends, and 19.8 percent for weekdays."

These findings certainly validate my personal experience. Over the eight months of my husband's hospitalization, virtually every time there was an emergency on a "night, weekend or holiday," problems arose. Two of the most notable problems included:

• refusal to call critical personnel at home on Thanksgiving;
• 1 nurse to 16 patient nursing coverage on Mother's Day.

While neither of these or any other "night, weekend or holiday coverage" cost my husband his life, many could have had I not provided 24/7 advocacy coverage. One of the most interesting things about "night, weekend or holiday coverage" is that these are the times when nursing staff inevitably tell you to "go home and rest." Given the above findings and my experience, these are the times where we need to be absolutely certain there is someone present to be with the patient. While nurses are caring individuals and undoubtedly mean it when they encourage you to "get rest," this is NOT the time to do so! Stand your ground and stay by your patient's side during these periods of vulnerability else your rest cost your patient his/her life."

HIS HEALTH AFFECTS MY HEALTH

According to an article posted on HealthDay News for Sunday, February 10, 2008, "having a husband or wife who needs to be admitted to a hospital with a serious illness poses health risks for the partner." Well, duh! (but it's nice to have it validated by statistics). "The culprit: The stress and upheaval the partner experiences while enduring the hospitalization of an ailing husband or wife... Overall, [the] study found that a spouse's hospitalization boosted the risk of a man's death by 22 percent compared with the death of a spouse. A husband's hospitalization increased a woman's death risk by 16 percent.

Some diseases posed more of a burden than others. For example, a woman's hospitalization for stroke, congestive heart failure or hip fracture raised her husband's death risk by 6 percent, 12 percent and 15 percent, respectively. Similarly, a man's hospitalization for colon cancer did not significantly influence his wife's death risk, but other diseases did have a major impact.

A spouse's hospitalization for dementia proved most stressful, raising risk of death 22 percent for men and 28 percent for women... In fact... having a demented spouse is as bad for you as having a dead spouse.

The study also identified certain time frames during which caregivers are particularly vulnerable, including immediately after a hospitalization and again three to six months into the illness.

The findings should frighten family caregivers... but more importantly, hopefully, help them give priority status to their own health needs."

There are lessons in these findings for those of us who care for a spouse or significant other.

1. We must pay attention to our own health first. Most of us get here when all else is resolved. To do so, threatens our own health and no one who loves us would want us to go down for the count while caring for another.
2. We must ask for help. We need the help as much, and sometimes more, than the patient. The patient has his or her health care providers focused on them. Who is focused on us?
3. We must take time for ourselves, without which we have few resources to assist us in dissipating our stress. Whether the time is for a hot bath, a massage, meditation, prayer, exercise, reading or any other "time out," these few moments of peace and solitude are critical to our survival.

Suzanne Mintz, president and co-founder of the National Family Caregivers Association, in response to the findings states that, "Spousal family caregivers' risk of depression is six times greater than that of non-caregivers. And, they are less likely to reach out for help, she said. To protect their health, Mintz urges family caregivers to spread the work load.

Caregiving is much more than a one-person job, especially when both the family caregiver and the care recipient are elderly... Often, spousal caregivers do not want to ask for or take help from their grown children, but that really is the first place we should all turn."

TAKE CARE OF YOURSELF!

WHAT IS YOUR TRUTH?

I received a wonderful quote today that I want you to hold close to your heart. When we care for another, it is easy to forget who we are. Know this...

__________

"What is your truth? Ask your heart, your back, your bones, and your dreams. Listen to that truth with your whole body. Understand that this truth will destroy no one and that you’re too old to be sent to your room.

Move into your truth as though it were an old house. Walk through each room. See, hear, and feel what it is to live there. Try to love what you find, and remember the words that come to you as you explore.

If you embrace it, if you are faithful to it, your truth will reward you with unimaginable freedom and intimacy with yourself and others. You won’t land in a world made to order; some people in your life may not like what you write. But those who remain will be allies, people who breathe deeply and listen. It will feel good to be seen completely and loved as you are. As Natalie Goldberg said after her friend found and read a piece of work-in-progress that she had left out from the day’s writing, 'I feel good because I don’t care that she sees how I really am. I’m glad. I want someone to know me.'”

— John Lee from Writing from the Body, excerpted in Art as a Way of Life

THE DISEASE CALLED DENIAL

On Monday, I returned home from doing three book signings and a conference in Orlando, Florida. One of my book signings was in a Barnes & Noble where, over the course of two hours, I watched this scenario play out over and over again –

• consumer walks in door
• consumer sees table and poster announcing book signing
• consumer reads title of book, Hospital Stay Handbook
• consumer quickly looks away and make a beeline anywhere other than to my table.

This confirms what I discuss in my book, our culture is BIG TIME illness and death adverse. The only people who have engaged me in discussion over the last two years have been folks who have experienced a hospital stay. They want to know:

• did I do right by my patient?
• what else could I have done to support their health?
• what could I have done to keep myself together?
  

and they want to share space and understanding with someone who has been through the same challenges.

The problem with this approach is that there are many things that can and should be done PRIOR to any hospitalization! And, if you wait to learn about these things at the time hospitalization occurs, not only may it be too late but you, as an advocate, may not be in a calm place emotionally, due to the stress of caring for someone you love. Delaying "enlightenment" is typically not in anyone's best interest.

So, if you have not learned about what to expect during a hospitalization, do so now. Hospital Stay Handbook is a good place to start. If you have not taken the actions you need to take to protect yourself and your loved ones, do so now. Maintaining your equilibrium during hospitalization is much easier if you are prepared. Do yourself and your loved ones a favor, GET READY NOW! Don't perpetuate "the disease called denial..."

STRAIGHT TALK ON CAREGIVING AND SELF-CARE

No one ever taught me how to be a caregiver... I responded from my heart when my husband became ill and it served me well while he was hospitalized. The same response almost killed me when I returned home and spent the next five years helping him regain his strength and his life.

When people used to tell me to "take care of myself," I dismissed the thought. However, it is the best piece of advice I can offer in regards to caregiving. If you are willing and ready to place yourself first, then join me as we explore tactical methods of caregiving and self-care in the midst of one of life's greatest challenges. If you are not willing or ready to place yourself first, you have two choices:

• join me to learn about the price you will pay; or
• ignore this plea for your health and life and pay the price.
  

There really is no other choice. Know that I understand your decision. I've been there and made both choices, and paid the price for both choices. I make no judgment. Just remember, there are no "free lunches" in this life...

On this blog, we will explore recent medical advances, terminology, resources, legal information and coping strategies. Let's engage in dialog around what we know about caregiving. Whether your perspective is as a:

• paid professional;
• volunteer;
• loving family member;
• friend;- newcomer; or
• long time provider,
  

we have all adopted coping strategies" to assist us, some productive and some destructive. Understand that what we "know to do" at a "head" level often does not translate into action when it involves ourselves and those about whom we care. This is especially true for professionals who make their living giving care and then fail to care for themselves and apply what they know when the crisis comes home.

You are wise about what works for you in life. Share your wisdom with all of us as we struggle to hold onto ourselves while holding another in sickness and/or injury.