Friday, June 25, 2010
Monday, June 21, 2010
- Patients may be simply too sick to attend meetings or actively pursue friendships with those walking a similar path
- Some diseases are so rare there are few patients to connect with and even fewer in a specific location
- If an illness can be contagious, a peer to peer meeting is potentially dangerous
- Family members may so overwhelmed with caregiving, they do not feel comfortable leaving the home for a support group or other peer support opportunities
A few months ago was the one year anniversary for the death of a beloved friend. Today I was thinking of her and missing her presence. On a whim, I decided to google her name. Being that she was a smart and active woman, there were lists of articles written about her and by her. Some had pictures and some had only her words. Through the tears in my eyes I felt the closeness I had been longing only a moment before. Here she was, in front of me, speaking through words of days past. It was as though we had been able to share a cup of coffee for just a little while. Somehow, with her image and language only a key stroke away, my grief was soothed.
I have been noticing other ways in which the power of the internet is gently influencing the grieving process. I am one of the millions of facebook addicts in this country and rely on it for way too much of my own socialization. For those who don't know, Facebook is an online networking site that makes it easy to keep in touch with hundreds of people at once, and yet somehow manage to create the feeling of closeness.
In the past year, I have had several facebook friends die. Because of the rules of facebook, the only person that can close down a facebook profile is the person themselves. This means when a person dies, the facebook page will remain. What I didn't expect was how people would continue to use that facebook page.
In all of the instances I have witnessed, people continue to write on the "wall" of the deceased person's profile. Sometimes they are sharing a funny memory the two had shared that made them smile that day. Some days they will express their deepest sadness and difficulties with getting through that day without the one they love. Other times, they will simply stop by and say "hi." In all of these postings, the grieving are speaking directly to the dead, without any sense of embarrassment or awkwardness. They are not talking about their loved one, they are talking to their loved one.
It is, in a way, the cyber version of a grave stone. A central place to go where a person's energy is stored and all who knew them are welcome to visit. It is a place to cry and share. It is a place to tell the ones we love we still care and they are not forgotten. It is, in my opnion, beautiful and unique. In a culture where we have so few ways to openly process our grief, there on facebook, we are loving those who left us behind.
I don't have profound words about the social implications of this new trend. I don't know really how it fits into our cultural grieving paradigm. All I know is that today I visited my friend on the Internet and it helped me feel close to her. When I go to the facebook profiles of those I love, I somehow feel like I am walking in the footprints they left behind. This, I think, is healing.
Sunday, June 20, 2010
Before I began my journey of political education, I had an image of what a professional lobbyist must look. This image likely came from various sources including media stories, Hollywood, legend and random stories I have heard in passing along the way. The characterization was not flattering and primarily consisted of men in suits with red faces doing dirty deals for questionable causes.
I have not spent much time in the political world but even a small amount of time is enough to see the corruption and disturbing practices of some individuals within the system. I am not naïve and neither is the American people; we know things in our government are not always just or pretty.
That said, I found my time with the professional lobbyists who were kind enough to let me shadow them to be both enlightening and inspiring. Dare I say I may not have had the whole picture when I had those ideas in my head? Dare I say the role lobbyists play in the ideals or the downfalls of our governmental processes are similar to the roles professionals play in medicine: there are some bad eggs but one bad apple should not spoil the bunch. Lobbyists with vision and integrity can be a vital and helpful part of the governmental machine. Likewise, lobbyists who use their talents and connections on behalf of less desirable issues, clients or agendas can be dangerous.
The role of the professional lobbyist is to be a paid intermediary. They arrange meetings on behalf of clients and speak with those in public office in an effort to move forward their client’s goals. What I did not understand before observing this world first hand was the wide variation in the type of lobbyists and how they work.
Industry lobbyists are professionals who only lobby for one group and organization. These lobbyists have one perspective, one point of view, on any given issue. An example of this is Jack, the lobbyist I shadowed who worked for the National Association of Social Workers. Jack himself is a social worker and therefore, as a lobbyist, was representing his own profession. This enabled Jack to bring a level of sincerity and integrity to his work because he understood the issues facing social workers first hand. In addition, the NASW has a clear message: to support bills that enable individuals to decide what is best for themselves. This clear message enabled Jack to lobby consistently for the same rights, policies and budget decisions without ever having to have a conflicting stance.
When I observed Jack, it was clear to me why he was a successful and effective advocate for both social workers and the people they serve. Jack is large in stature and larger in personality. He is both knowledgeable and quick minded. Partly because of his training and partly because of who he is, he has a natural and sincere interest in others and this reads clearly. Jack’s work has a firm foundation in the relationships he has formed. Representatives can trust him to be honest and consistent in his concerns and arguments. His combination of being no-nonsense, humorous and consistent makes him ideal for his role as industry lobbyist.
As Jack and I walked around the grounds of the various Legislature Buildings, he explained to me that the work he does happens in more places than the various meeting rooms. In fact, more often than not, by the time a bill gets to Committee, he knows what the vote will be because all of the real work takes place before the actual meeting. If Jack knows that his bill is going to be voted in the favor of his organization, he may not attend that committee meeting and, instead, track down more pressing business. It should also be noted that Jack had an unusual level of energy, as do many people in this line of work. At any given time, Jack might be watching and weighing in on as many as 30 bills.
Jack’s lobbying efforts happen whenever the opportunity presents itself. This means elevators, hallways, stairwells, and yes, even bathrooms. Whenever Jack can get a moment to talk to a resistant representative or a senate ally that needs to be informed of some problems on the horizon, he will take it. Life is that hectic in the political worlds, people are that busy, and the issues are that important.
So what kinds of things might you hear Jack saying in an elevator? He says one of his favorite opening lines is “OK, Representative, it’s time for you to get mad about this.”
Bottom line: It’s all about the relationships and seizing the opportunity
How do we build those relationships, you ask?
Legislative Liaisons: state employees who track bills similar to lobbyists but don’t have as much power as professional lobbyists
When people think of lobbyists, they are often envisioning contract lobbyists. These are the people and the firms that carry a load of clients with varying issues and perspectives. Often contract lobbyists are lawyers, but this is not always the case. I had the opportunity to sit down with the vice president of one of the biggest and most successful lobbying firms in Washington DC.
Side note: How did I get this chance, you ask? I’m glad you asked. This is an example of the power of “what’s the worst that can happen, they say no?” In my research, I found and joined a website called lobbyist.info. I took a stab in the dark and wrote to this faceless website, told them my project, and asked if they had any suggestions for a lobbyist I could shadow during an upcoming trip to DC. Would you believe they wrote back in less than 24 hours to say one of their board members had volunteered to meet with me, his name was Mike, and he would be contacting me. Who knew? Just goes to show, they can say no but they may say yes. Might as well ask, right?
Before I took my trip to DC, Mike and I had exchanged several emails and he seemed very casual and down-to-earth. Imagine my surprise when I arrived at his office and realized I had just walked into a real-life Hollywood set. The sleek office took up half of the eleventh floor with views overlooking Capitol Hill and the National Monument. When I told the receptionist who I was there to see she kindly motioned behind me and said “Are you Tiffany Christensen?” On a flat screen television behind me read “We welcome Tiffany Christensen.” This was the big leagues and I was wearing flip flops. Miscalculation of wardrobe, for sure!
When Mike came to greet me he was kind and, even in a full suit and tie, approachable. He began to show me around his office that had few corners and mostly curved walls leading us to various destinations. It would have taken me all day to find my way back to the receptionist. Immediately, Mike began to point to impressive and recognizable campaign displays hanging up. I don’t mean campaigns for candidates; I mean the campaigns you see in magazines and television advocating certain causes like preventing teens from becoming smokers and raising awareness about hepatitis C. These were not obscure. I recognized almost all of the campaigns.
I was confused. I thought I was visiting a lobbying firm but this sure looked like a marketing firm. Had I contacted the wrong people? Mike continued to explain the campaigns on the wall and the clients they designed them for. The Post Office, The Ronald McDonald House, and the YMCA were just a few. These were big clients with big agendas. This was a big firm with big ideas. I was looking at lobbying on a whole other level.
After a tour of the office, Mike and I sat down to look at a pile of client studies he had pulled for me. He went through each example and explained the client, the intention and the resulting action. The kind of representation his company provided varied.
Fill in examples here
There were consistencies between the techniques of Jack and Mike. They shared some of the same frustrations and some of the same love for the role they got to play within our political system. They both said the same thing to me several times:
“You, the constituent, have more power than I do.”
Whether you are working in a smaller setting, a large corporate setting, or somewhere in between, first person narrative still trumps all. Mike sites the main barrier to having that narrative heard is the fact that there are so many voices, it can be hard to break through the masses. This is part of what Mike’s firm specializes in. To remedy this, they have created a training center for people to come and learn how to present themselves at press conferences, on CNN, and any other large scale forum. They train everyone from CEO’s of major corporations to patients like me.
At some point during my talk with Mike, I began to feel both excitement for the impressive work that I was seeing in front of me and discouraged that this kind of lobbying skill was reserved for larger fish. Mike addressed this by encouraging me to approach firms like his. He repeatedly asked me to “not write it off” but instead ask for help. If there was a compelling story, a policy that needed addressed, or some other valuable message from a small organization or individual, Mike believes firms like his might be able to help. One way they could do this is by doing the work pro-bono and another way is to scale back the effort where it may not be a full out marketing campaign but the connections could be used to distribute important information, press releases etc.
I like Mike’s suggestion and I have another of my own. If I were to take away the glossiness of the campaigns I saw at Mike’s office, there would still be an essential, effective core. These campaigns were not just veneer, they were smart, concise, and clear. They took time and preparation. Whether they were letters, press releases, or large television campaigns, they were not off the cuff. They took in to consideration their audience, the political climate of that moment, and the emotional hook. When I walked away from the campaigns, there was never any question about what “the ask” was, either to the general population or to a particular political figure.
Bottom Line: We may not all be able to hire big firms like Mike’s. That doesn’t mean we can’t think like them. Make relationships the foundation of your advocacy efforts and then design a clear, memorable, and well-thought out campaign. We may not have access to industrial printers but we can all be prepared and clever in our presentation.
The Dark Side of Professional Lobbying:
If you ask a lobbyist why the profession has such a bad reputation, they will likely tell you that they are misunderstood. For those that have integrity and a true respect for the process, this is true. However, lobbyists did not get a bad reputation for no reason. There are some questionable lobbying practices and some that are simply corrupt.
Perhaps one of the more commonly known, and widely disapproved of, lobbying practices is called “the junket” which is an excursion for the purpose of pleasure at public expense. Junkets might include all-expenses-paid conferences in luxurious locations, or expensive meals and wine. An example of this kind of extravagance is Mr. Tom Delay’s many trips paid for by various organizations. These include: 10 days in Kona, Hawaii in 2002, in which the American Association of Airport Executives reimbursed him for $5,967.28, a trip to Singapore in 2001 in which The Heritage Foundation reimbursed Mr. and Mrs. Delay’s for $8,428, and the same year the National Center for Public Policy Research paid for his and his wife’s visit to Scotland that same year with a reimbursement of $28,106.
Large organizations set aside great sums of money to fund lobbying efforts. As an example, The Pharmaceutical Research and Manufacturers of America had $150 million budgeted for 2004. It is easy to see with these examples why the public looks down on the lobbying profession. While the practices may be tolerated, they clearly carry with them an air of bribery. With such lavish gifts, it is only logical to conclude that government officials would be unable to make objective decisions in the face of such gifts.
In 2007, the Honest Leadership and Open Government Act was passed to try an address some of the corruption, like the examples above. Here are a few key points of the law as found on commoncause.org:
Prohibiting Gifts by Lobbyists
- Prohibits lobbyists from providing gifts or travel to Members of Congress with knowledge that the gift or travel is in violation of House or Senate Rules.
Full Public Disclosure of Lobbying Activity
- Requires lobbyist disclosure filings to be filed twice as often, by decreasing the time between filing from semi-annual to quarterly.
- Requires lobbyist disclosures in both the Senate and House to be filed electronically and requires creation of a public searchable Internet database of such information.
- Increases civil penalty for knowing and willful violations of the Lobby Disclosure Act from $50,000 to $200,000 and imposes a criminal penalty of up to five years for knowing and corrupt failure to comply with the Act.
- Requires the Government Accountability Office to audit annually lobbyist compliance with disclosure rules.
- Requires lobbyists to certify they have not given gifts or travel that would violate Senate or House rules.
- Requires the disclosure of businesses or organizations that contribute more than $5,000 and actively participate in lobbying activities by certain coalitions and associations.
New Transparency for Lobbyist Political Donations, Bundling and other Financial Contributions
- Requires disclosure to the Federal Election Commission when lobbyists bundle over $15,000 semiannually in campaign contributions for any federal elected official, candidate (including Senate, House and Presidential), or leadership PAC.
- Requires lobbyists to disclose to the Secretary of the Senate and the House Clerk their campaign contributions and payments to Presidential libraries, Inaugural Committees or entities controlled by, named for or honoring Members of Congress.
Prohibited Use of Private Aircraft
- Requires that candidates, other than those running for a seat in the House, pay the fair market value of airfare (charter rates) when using non-commercial jets to travel. (This affects senate, presidential and vice-presidential candidates)
- Requires candidates for the House to comply with rule XXIII (15), which prohibits use of non-commercial aircraft.
Toughening Penalties for Falsifying Financial Disclosure Forms
- Increases the penalty for Members of Congress, Senior Staff and Senior Executive officials for falsifying or failing to report financial disclosure forms from $10,000 to $50,000 and establishes criminal penalties of up to one year of imprisonment.
As my lobbyist guide, Jack, told me “You win some and you lose a lot.” This is not a perfect system, far from it, but that does not mean it is not worth your time and effort. Even against big companies or fancy corporate lobbyists, the patient voice can still prevail.
The Patient Experience, Front and Center, Inspires Change
In the 1960’s and early 1970’s patients with kidney disease requiring dialysis were struggling. This expensive treatment was not covered by Medicare and had to be paid for by private insurance or out of pocket. In 1971, serious policy debates focusing on national health insurance were underway in both Congress and the
White House. During a Congressional Committee Meeting, The National Association of Patients on Hemodialysis (NAPH) was allowed to speak about the importance of insuring people receiving dialysis.
Despite urges not to by several kidney organizations, the vice-president of NAPH chose to take his dialysis treatment in full view of the committee before the meeting officially began. He was accompanied by a reluctant physician there to safe-guard the treatment and the patient. The press discovered this story and made the dramatic event known to the general public.
Some believe this brave display influenced the decision to create the Medicare ESRD (End Stage Renal Disease) Program; giving dialysis patients meeting Medicare criteria the coverage they need for treatment. Others believe the testimony of a parent of a hemophiliac child made a greater impression on congress. Either way, the fact remains: the patient and family voice was a catalyst for change on the national level
Thursday, June 17, 2010
The Chain of Command in hospital and clinical settings can be very confusing. Traditionally, the official descriptions of healthcare hierarchy is separate for nurses, physicians and other professionals. However, it benefits the patients to understand where these professions might fall together. This graphic is not based on scientific data but rather observations and opinions of professionals working in healthcare and from those receiving care. This chart is primarily modeled for teaching institutions.
Do you know the roles of all of the people (and others) included in this chart? If not, here are some definitions that may be some help.
Healthcare Administration: leaders who oversee the administration of hospitals, hospital networks, and health care systems.
Some of the titles you may recognize for the administration include: Chancellor, Vice Chancellor, President, Senior Vice President, Chief Executive Officer, Dean, Executive Director, Chair
Attending: an authorized practitioner of medicine, as one graduated from a college of medicine or osteopathy and licensed by the appropriate board. This includes:
Surgeons: a physician who specializes in surgery
Hospitalists: A physician, usually an internist, who specializes in the care of hospitalized patients.
Sub-Specialists: a physician whose practice is limited to a particular branch of medicine or surgery, especially one who, by virtue of advanced training, is certified by a specialty board as being qualified to so limit it
General Practitioner: a physician whose practice consists of providing ongoing care covering a variety of medical problems in patients of all ages, often including referral to appropriate specialists
Fellow: General Surgeons & Internal Medicine physicians training for subspecialties
Chief Resident for Surgery or Medicine: a senior resident physician who acts temporarily as the clinical and administrative director of the house staff in a department of the hospital.
Resident: a graduate and licensed physician receiving training in a specialty with 3-4 years experience, depending on area of study
Physician Assistant: certified by an appropriate board to perform certain of a physician's duties, including history taking, physical examination, diagnostic tests, treatment, and certain minor surgical procedures, all under the responsible supervision of a licensed physician
Nurse Practioner: authorized to practice across the US and have prescriptive privileges in 49 states. NPs also take health histories and provide complete physical examinations; diagnose and treat many common acute and chronic problems; interpret laboratory results and X-rays; and provide health teaching
Intern: An advanced student or recent graduate who assists in the medical or surgical care of hospital patients and who resides within that institution in the first year of residency
Charge Nurse: the nurse assigned to manage the operations of the patient care area for the shift. Responsibilities may include staffing, admissions and discharge, and coordination of patient care.
Nurses (RN): a graduate nurse who has been legally authorized (registered) to practice after examination by a state board of nurse examiners and who is legally entitled to use the designation RN.
Nurses (LPN): graduate of a school of practical nursing who has been legally authorized to practice as a licensed practical or vocational nurse (L.P.N. or L.V.N.), under supervision of a physician or registered nurse
Most of the above definitions were provided by:
For these and more clarification about professional titles visit this website
Monday, June 14, 2010
A Need for Change Comes with Some Ramifications:
A 15-month study by an Institute of Medicine (IOM) committee reviewed the relationship between residents' work schedules, their performance and the quality of care they provide.
"The Institute of Medicine study provides the clear evidence to prove what we have long-believed is true—fatigue increases the chance for human error," said AHRQ Director Carolyn M. Clancy, M.D. "Most importantly, this report provides solid recommendations that can improve patient safety, as well as increase the quality of the resident training experience."
After this study, changes were made.
1. Limiting the resident’s work week to 80 hours
2. Limiting continuous time on duty to 24 hours (with 6 additional hours to complete all tasks)
3. Requiring 24 consecutive hours off out of every 7 days
While this structure seems perfectly logical and reasonable to the average person (80 hours a week is s till a lot!), this is major change in the ways hospitals and medical training centers have traditionally done business. This new rule has not been easy to implement. There are issues this new rules brings up that may not be obvious to patients and families. Here are a few:
1. Because increasing patient loads, the reduction in residency work hours has forced programs to create new and inventive ways to schedule patient coverage. This is not always as reliable as everyone would like it to be.
2. While patients and families understand the dangers and difficulties that come with residents working long hours, in some circumstances, the new rules may cause friction between staff and patients/families. The reduction in hours means more faces coming and going which feels like less consistent care.
3. These rules impact the medical schools as well. Because of these changes, it may be necessary to increasing the length of residency training as well as the number of medical residents. This would represent a major financial burden to an already strained healthcare system.
So, once again we see, it’s not as simple as it seems.
This very logical and humane decision is an obvious benefit to both the physician in training and the patients. This change signifies a dedication to decreasing medical error but does not come without its own set of complexities and organizational re-arranging.
As patients and families, we are most often experiencing healthcare within the walls of a clinic or hospital room. What we may not be able to see from the exam table or hospital bed is the large picture. Even when a non-controversial decision is made, it may have unpredictable fallout. The cause and effect can be extremely challenging to manage.
It is our job to keep providing feedback, keep letting the leaders know what is working and not working, while remaining aware that it may not be as simple as it seems. When the system isn’t working, we have to keep finding ways to have our voices heard and keep squeaking until we get the grease. Ideally, we will remain aware that Rome was not built in a day and view System Advocacy as a long-term project. Partnering with a whole system can require patience but when policies are implemented that make our care better and safer, I hope you’ll feel like it was worth the wait.