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.