ENGAGE WITH GRACE: Za's Story

Engage with Grace from Health 2.0 on Vimeo.

Engage With Grace
By Alexandra Drane &
The Engage with Grace Team

We make choices throughout our lives -- where we want to live, what types of activities will fill our days, with whom we spend our time.

These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.



This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones "know exactly" or have a "good idea" of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.But our end of life experiences are about a lot more than statistics. They're about all of us.

So the first thing we need to do is start talking. Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences.

And we're asking people to share this One Slide - wherever and whenever they can.at a presentation, at dinner, at their book club. Just One Slide, just five questions. Lets start a global discussion that, until now, most of us haven't had.Here is what we are asking you: Download The One Slide and share it at any opportunity - with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them. Just One Slide, just one goal. Think of the enormous difference we can make together.

To learn more please go to www.engagewithgrace.org.

ENURGI GUEST WRITER SERIES

Recently, I have had a number of wonderful associations contact me about ENURGI. The response to our vision has been overwhelming. In many conversations, we have learned that there are thousands of highly specialized disease-specific organizations focused on providing support and resources for patients and loved ones. These organizations and their members have taught us that their conditions all have different caregiving requirements.

One very special organization, Mesothelioma.com, provides support and information for abestos exposure and mesothelioma cancer. The organization reached out to ENURGI because it has found that the disease, alone is not the battle. The caregiving duties and burdens can be just as tough.


Mesothelioma Paves Tough Road for Caregivers

Caring for anyone with a terminal illness is a tough gig. The physical strain of being the primary caregiver is complicated by the mental aspects of dealing with a loved one who’s dying. On top of that, financial issues often arise, adding yet more stress to an already overwhelming situation.

For families with a loved one who has been diagnosed with mesothelioma – an asbestos-caused cancer - the impact is often fast and furious due to the nature of the disease. Common among individuals – mostly men – who worked in such fields as construction, shipbuilding, plumbing, the railroad industry, or power and chemical plants, the disease usually hits individuals between the ages of 55 and 70 and is generally not diagnosed until it reaches its later stages. Most patients die within a year of diagnosis and, in the meantime, the symptoms of the disease are horrific. That means a rapid decline is imminent. For caregivers, it’s a very quick course in healthcare and stress management.

Being in the later stages of cancer, the mesothelioma victim will become quickly dependent on others, probably unable to work or even perform routine everyday tasks. He will no doubt be feeling many of the emotions that come with such a disease, like anger, denial, depression, and even guilt, so the caregiver will become counselor, trying to assuage those feelings while sometimes being the target for the anger. If the patient was the “man of the house”, the caregiver will become the financial wizard, figuring out how to juggle funds and deal with mounting medical bills. The mesothelioma caregiver will also become the nurse, dealing with myriad new medical terms, procedures, and other medical-related information essential to the patient’s well being. She’ll also be chauffeur, nutritionist, and a plethora of other things to the patient.

Faced with almost no warning that their loved one is dying of a disease that quickly destroys the body, the primary caregiver of a mesothelioma patient can burn out quickly. Because traditional cancer treatments have historically had very little positive affect on mesothelioma patients, the caregiver must stand by and watch their loved one slip away without much hope for improvement.

Every caregiver needs a break from this routine, but loved ones of mesothelioma patients often try to hold on to every last minute they are able to spend with the patient, especially since the minutes are few. But like the delicate flowers they are, caregivers – like patients – need to be well-tended. Family members must watch closely for signs of burn-out, stepping in whenever and wherever necessary. Just as the patient needs support, the caregiver also needs a counselor, nurse, financial wizard, nutritionist, and plenty of friends to lean upon during this trying time.

DIG DEEP: The Background Check, The Reference Check, The Family Check & The Gut Check

I thought yesterday's call from the in-house counsel of one of our partners was somewhat strange. We ended up having a great discussion (well as good of a conversation you can have with an attorney) about home health care and how the industry's lack of regulation was one of the primary motivators in building ENURGI. We talked about non-certified caregivers posting profiles on sites such as craigslist without any supporting documentation including references or background checks.

Later that evening, my husband was sitting at the counter as he does religiously every night reading the days Wall Street Journal, when an interesting headline caught my attention: "Case of Abuse By Home Aides Draws Scrutiny." The first two sentences were equally attention grabbing: "In late 2006, 85-year-old Priscilla Stovall, a bedridden survivor of three heart attacks, was killed in her Clovis, Calif., home. Her killer: the aide hired to help her around the house."

The article was frightening. An incapcitated, elderly woman. A home health aide. A theft. A murder. A poor background check by the home health agency.

Hmmm. I wonder if that is what prompted the lawyer's call?????

The WSJ article highlighted stories about caregivers with criminal pasts working for agencies, stealing from their patients and committing other acts of elder abuse. It provided advice on how to best screen candidates, what questions to ask prospective home care providers and listed information links for conducting background checks on caregivers.

My advice to anyone searching for a caregiver to take care of themselves or a loved one: start with the background check and go much deeper. Background checks should be the start, not the final approval in deciding on whether to hire a caregiver.

Background Checks: Running a background check should be the initial step in your interview process. Background checks vary and there are different levels of how "deep" into a persons background you can review.

Always search state, federal, county and local records in both civil and criminal courts.

Reference Checks: Checking prior patients that have been cared for by a caregiver candidate is invaluable. A MUST! This is your chance to get first hand knowledge about the caregiver. After a 10 minute conversation with a former patient, you will surely gain great insight about your caregiver.

Talk with past patients. Ask questions -- tons of them. Ask questions about quality of care, ability, knowledge, skill, friendliness, warmth, and punctuality.

Family Checks: Visit with families of patients. Ask questions -- tons of them.

How did the caregiver interact with family members? Did the caregiver communicate well with family members about the patients care? Did the caregiver involve families in the treatment and care plans of the patient?

The GUT Check: I must admit, I am one of those people who always conducts a thorough GUT check on all of life's major decisions. I do this last, after all of the objective information is gathered, analyzed, pondered, twisted and turned.

The GUT check confirms what you already know OR tells you something is amiss and you step back. If you have done all of the above and something still seems a little "off," you are probably best to continue looking.

I also hope the WSJ article serves as a call to action for everyone in healthcare to take notice of the duty we have in protecting our elderly population. That is why when I started ENURGI, we began with creating a national caregiver database. A year ago we envisioned a centralized location for credentialing of caregivers and posting background checks and references.

Today we have over 1.5 million records of licensed caregivers and over 10,000 registered users posting caregiver profiles, background checks and references. We are on our way.

In memory of Priscilla Stovall, I hope to get there even faster.

Mommy, where is your picture?

"Mommy, where is your picture?"

That was the first question my four-year-old daughter asked as I showed her some caregiver profiles posted on ENURGI. She was right -- Where was my profile?

So, I thought this week I would share with you a little bit about myself.

About Me: Chiara Bell, Founder & CEO, ENURGI

I am married to an amazing man named Kevin. We live in Singer Island, Florida with our two daughters, Chiara (4) and Julianna (10 months). We have a big, brown, chocolate lab, Kaena, who spends most days with my retired in-laws.

I realized in the middle of my second year at law school, I did not want to be a lawyer but continued on, graduated and took the NYS bar so my parents wouldn't be disappointed in me. I think they still are.

I have worked in health care since 1998 and have "moved on" twice -- probably because of my inability to stop challenging the status quo.

I always felt that we (the health care companies I worked for) under valued and under appreciated caregivers.

Unemployed and three-months pregnant, I interviewed with a home health care company to provide HR consulting services. I desperately needed the job and started immediately.

Two months later, I started ENURGI out of my four-year-old daughter's butterfly filled bedroom. Hannah Montana is quickly taking over the space.

I still work out of my daughter's room until the clock hits 8PM; then I just lug my laptop into the living room and continue plugging away.

I sleep in my running clothes three days a week so that I can roll-out of bed the next morning for my 5:00am group runs.

I tend to be messy. Once a day I can be seen searching for my car keys, cellphone, wallet or blackberry. Usually they are found at the grocery store or in my daughter's crib.

I want to help families and patients ease the burden of finding care for a loved one.

I want to help caregivers earn freedom, respect, confidence and quality pay.

I want to change home care in such a way that is empowering for both patients and caregivers.

I just came across the above speech given by Eva Vertes at the 2005 TED conference and was literally blown away.

At the age of 15, Eva began researching the impairment of the nervous system on fruit flies for a high school science fair project. In her abstract, Eva explained that when a patient is affected by Alzheimer's, neuron's in the brain are depleted rapidly due to cell death, which is often referred to as "apoptosis." Apoptosis is a type of cell death in which a series of molecular steps in a cell leads to its death. This is the body's normal way of getting rid of unneeded or abnormal cells.

Apoptosis is often triggered by beta-amyloid, a toxic protein fragment that accumulates in the brain of Alzheimer's patients. Eva theorized that preventing this form of apoptosis could potentially prevent the onslaught of Alzheimer's. In her research, she focused on certain properties of a compound called RPI-069. After a series of experiments, she tested her theory and demonstrated that the RPI-069 protein was able to reduce the apoptosis by an average of 60%. Eva's results were groundbreaking and could possibly lead to new therapies and potentially, a cure for Alzheimer's.

I was amazed by Eva for the obvious reasons: age 15, discovering potential cure for Alzheimer's, 1st place in international science competition, etc. But as I watched her speech, I loved her refreshness and her confidence in not having all the answers. Most importantly, I was inspired by her ability to look at scientific problems through a different lens.

What if we applied Eva's approach to caregiving and patient care?

4.1 MILLION RATINGS TO GO - ENURGI LAUNCHES CAREGIVER RATINGS

It seems that everyone is chasing after doctor and hospital ratings. From Revolution Health to Yelp, consumers are encouraged to rate hospitals and physicians in their communities. Hospitals and physicians are the two obvious providers to rate in our healthcare system. However, I think we have left out, the largest and, arguably the most important members of the healthcare profession --- nurses, certified caregivers and home health aides.

Let’s compare the numbers.

Today, there are approximately 4,927 community hospitals and an average of 800,000 licensed physicians in the United States. Comparatively, there are 1.4 million Registered Nurses, 749,000 Licensed Practical Nurses, and 1.8 million certified nursing assistants, home health aides and non-certified caregivers.

That is roughly 4.1 Million members of the healthcare community that we have left out.

All of us have been cared for, in one way or another, by a nurse or nurses’ aide. There is a group of nurses at Strong Memorial Hospital in Rochester, New York, who I credit with saving my brother’s life when he was on a vent in their transplant unit. There is Jacqui, who practically delivered my second daughter. My husband and I still talk about Jacqui whenever we dive into the story of Julianna’s birth with family and friends. She was everything you would want in a caregiver – smart, knowledgeable, easy to talk to, soothing, helpful and kind.
Jacqui and the nurses at Strong Memorial Hospital would have five stars under their profile picture – if there were a way for me to publicly rate them.

I have also had the unfortunate encounter with caregivers who should not be, in my opinion, in the healthcare profession. I left my OB/GYN six months pregnant with my first daughter when his nurse told me I was overreacting to nightly nose bleeds, insomnia and bouts of hysteria. “Your just pregnant, deal with it,” was her advice. In my caregiver review, this nurse would have very few stars.

How is it that the largest segment of healthcare professionals, who provide a majority of the direct, hands-on patient care have been left out of the health 2.0 ratings explosion? These 4.1 million nurses and nurse aides have greater daily contact with patients than anyone else in the hospital, nursing facility or home care setting. They perform clinical procedures, assess patient conditions, and monitor patient stability. They take vitals, change dressings, bathe, feed and turn patients. They communicate with family members and answer questions often with the push of a button. They provide companionship and assistance in the comfort of a patient’s home. They cook, clean and monitor medication intake.

Even though nurses, certified aides and para-professionals provide care to millions of patients annually, consumers have yet to be provided with a tool for rating these caregivers. Although most providers evaluate nursing staff and some are subjected to government regulatory review, they do not actively seek caregiver ratings for all staff. Furthermore, providers operating in the face of a significant nursing shortage, sometimes accept mediocrity in order to maintain compliance with mandated staffing ratios. Private providers even have more leeway in turning a blind eye at poor caregivers in order to keep the doors open and profit margins up.

An open source model for reviewing and rating nursing personnel is desperately needed. Not just for families and patients, but for caregivers as well. Talented caregivers should have a platform for marketing their skills, building a network of referrals and leveraging their abilities in this demanding labor market.

When I built ENURGI, the vision was to empower patients and families in need of home care to connect with local caregivers. We have since built the first, national caregiver database with an open platform for connecting and managing caregivers at home. A key feature of this platform is caregiver ratings. Patients and families can rate their caregivers based on quality, dependability, expertise and punctuality.

Initially, our ratings were open only to ENURGI patients who had actually hired and received care from ENURGI caregivers. The reasoning was that we wanted ratings submitted by patients who could objectively assess the quality of caregivers on the site. Since our launch, families, patients and co-workers across the country have urged us to open the ratings to anyone. Patients sent us emails asking whether they could rate caregivers who previously took care of them. Co-workers who work or worked with ENURGI providers asked to submit ratings on behalf of their colleagues.

The power of an open, caregiver rating system can be illustrated by a recent encounter with someone who did not find her caregiver on ENURGI. Rather, a woman who had recently lost her mom sent an email asking how she could post a profile for the caregiver that had taken care of mom. When I spoke to her, the woman explained that she wanted to help the caregiver find another job because she was one of the most “amazing caregivers” she had met. She emphasized that “anyone searching for someone to help them care for a loved one” should be lucky enough to have this caregiver. “Now that my mom has passed, I want to help her find another job. She is family.”

With that conversation, we decided to open up the ENURGI caregiver ratings. Family, friends, employers, and colleagues can now search on ENURGI and rate a caregiver that they know.

ENURGI is breaking new ground today. All of us should begin acknowledging the largest and perhaps the most important members of the healthcare ecosystem – our nurses, certified home health aides and home care professionals.

CONVERSATIONS BUILDING ENURGI

Where have we been, you may ask? It certainly has been a long time since my last post, but we decided that the most important thing in 2008 was to have as many direct conversations with our users as possible. For the past few months we have been talking with patients and caregivers across the country, getting insight and feedback about ENURGI. It is these conversations that have essentially shaped our focus these last six (6) months.

We have some amazing stories of caregivers and patients connecting on ENURGI --- but I will save that for another post as you will be hearing from me each week as we move forward!

Two of the more exciting features now on ENURGI leverage instant communication through mobile and video technology. ENURGI users can now reach out to one another very quickly through ENURGI mobile. And caregivers can start to really market themselves directly to patients with ENURGI Video.

ENURGI MOBILE
This great idea came from our caregivers. We were curious about the slow response time of caregivers when a patient expressed interest in their profile. Sometimes, it was a day or two before anyone responded to a patient inquiry.

In a conversation with several caregivers we learned that they do not necessarily check email as they were so busy working and taking care of their families. One caregiver told me that she would rather receive a text message when someone was interested in her services -- In that conversation, ENURGI Mobile was born.

Now caregivers and families can sign up for ENURGI Mobile and receive text messages anytime a member reaches out to a family, patient or caregiver. Caregivers can also receive alerts when a new job is posted in their community. So if you haven't already, login to your ENURGI account and sign up for ENURGI Mobile.

ENURGI VIDEO
We have also integrated a video display feature where caregivers and families/patients can submit a videography of themselves. A caregiver can produce a video further enhancing his/her ENURGI profile. A family member can add video of a loved one so that caregivers can get a sense for a patient's care needs.

As ENURGI grows, we see a lot of exciting ways to leverage the video communication for training and educating members of the ENURGI community.

ANDREW OLMSTED'S FINAL POST

"What I don't want this to be is a chance for me, or anyone else, to be maudlin. I'm dead. That sucks, at least for me and my family and friends. But all the tears in the world aren't going to bring me back, so I would prefer that people remember the good things about me rather than mourning my loss. (If it turns out a specific number of tears will, in fact, bring me back to life, then by all means, break out the onions.) I had a pretty good life, as I noted above. Sure, all things being equal I would have preferred to have more time, but I have no business complaining with all the good fortune I've enjoyed in my life. So if you're up for that, put on a little 80s music (preferably vintage 1980-1984), grab a Coke and have a drink with me. If you have it, throw 'Freedom Isn't Free' from the Team America soundtrack in; if you can't laugh at that song, I think you need to lighten up a little. I'm dead, but if you're reading this, you're not, so take a moment to enjoy that happy fact."

Major Andrew Olmsted was killed in Iraq on January 3, 2008. He was an avid blogger and left his final post with a friend should he never return.

I have been pretty consumed lately, focusing long hours, days and weekends on ENURGI. Every thought has had some thread of what is happening with ENURGI -- talking to caregivers, registering families, pitching VC's, building partnerships, changing design colors.....non-stop.

Yet, when I read Andy's Final Post, I was shaken back to reality. I was brought back to understanding this life and what is important.

Please take the time to read the entry. Everyone should.

RUNNING AND WALKING FOR YOUR HEALTH

I never really exercised until May 2003. Although I swam competitively as a child, I always felt pretty clumsy and, well, uncoordinated. This coupled with my "social calendar" caused me to rarely engage in daily exercise. I also had the benefit of fairly good genes so I always maintained a nice body weight and could easily fit into my size 4 jeans.

That was until my first pregnancy in which I gained about 40 pounds. Losing the baby weight was a struggle, until I started to run. Since then, I have ramped up my running. I became a part of a great running group, ran in several half-marathons and completed the Chicago Marathon in October 2006. On Saturdays, our running group runs a nice 10 1/2 mile loop along the water in Juno Beach, Florida. During the week we run on bridges, along trails and at a high school track for a tough speed workout.

And I have never felt better mentally.

I tell this story because the medical journal Neurology published a finding last week demonstrating that exercise may prevent serious diseases associated with aging, including Alzheimer's. Monitoring the exercise habits of 749 men and women over a four year period, participants who had the highest level of walking were found to have a 27 percent "lower risk for developing vascular dementia than those people who walked the least."

A 2004 study published in the American Journal of Epidemiology similiarly showed that regular physical activity may actually lower the risk of Alzheimer’s disease. During the five-year study, Canadian researchers followed more than 4,600 people age 65 and older. At the start of the study, participants did not suffer from Alzheimer’s disease or any other cognitive impairments. Results showed that regular physical activity lowered the risk of Alzheimer’s disease by as much as 30 percent.

These studies have sparked a sharp debate regarding the ability to control and/or prevent debilitating diseases such as Alzheimer's through good diet and daily exercise. Science has not identified the primary root for Alzheimer's and I agree, we cannot place false hope that a balanced diet and exercise will shield us from the ravages of the disease as we age.

As researchers continue their work in studying and understanding Alzheimer's, the best we can do is resolve to maintain a healthy lifestyle. So in this New Year, go for a run. Take a walk with your kids. Join a gym. And enjoy the immediate benefits no matter what may happen in the long run!