People say that our mouth is a window into the health of our body and that our teeth are part of our public image. I have always tried to take good care of my teeth and have appreciated the contribution of every single one of them. Up to this recent ordeal, I had all my teeth and had been seeing the same dentist for the past 20 years. I do not have dental insurance and have paid all the dental expenses out of pocket. I did not even have my wisdom teeth extracted as an adult.
Then it happened: I had to have an upper right tooth filling done, and this tooth was next to a wisdom tooth. The upper right tooth somehow got cracked and infected. My dentist pounded on the tooth but could not extract it without removing the adjacent wisdom tooth as well. At one point, a root canal was recommended, but it would cost over a thousand dollars for a root canal. Of course, there would be a separate cost as well for the crown or cap. However, I had complete trust and confidence in my dentist since we had developed a relationship for many years. For regular dental care, he had even offered me discounts and a payment program for which I was appreciative, but when something unexpectedly occurred, no payment plan could amend the worries and insurmountable cost.
At the end, after lots of headache, heartache and money spent, I emerged with two fewer teeth. People may not think of losing a few teeth as a big deal, but if you have never lost a tooth in your adult life, it can be quite traumatic! People tend of think of the sick, the very young or the elderly as those who would lose their teeth. You feel weak and vulnerable. On the practical side, foods get trapped in the gap, space or hole created by the missing teeth. It changes the way you chew and eat and affects the teeth surrounding it. I’m now worried that I will wear out the left side of my jaw. However, more than anything else, I’m disappointed at my dentist’s cavalier attitude. I believe that dentists should not try to convince their patients to do something but should present options or choices and let the patients decide. Ultimately, it is the patient who will have to live with the consequences of the decision and pay for the costly treatment.
As a caregiver for her mother, Denise Weis understands the importance of quality and coordination within the health care system. Over the years, Denise and her siblings have created a system to coordinate care for their mother, who was diagnosed with congestive heart failure and also suffers from Alzheimer’s. “My mother is going to be 82 next year,” Denise said, “and I feel blessed that we still have her.”“I am more aware and concerned about the quality of health care because of the situation with my mother,” said Denise. Denise has been fortunate to have good experiences with health care providers, which she contributes to her ability to be proactive in her mother’s care and an advocate for her well-being. Denise is also aware of the critical need to preserve social safety net programs like Medicaid and Medicare. Without these programs, her mother would no longer be able to access her health care providers or afford the medications that help maintain her health.
In April 2011, Denise completed Lift Up Your Voice! with the PA CBC, a training that teaches people the basics of advocacy. Denise is a tremendous advocate and actively involved with CHC. In speaking about her role as an advocate, Denise stated there are no boundaries to what she can achieve: “I’ve done things that I’ve never dreamed I would do,” she said.
Since Lift Up Your Voice!, Denise has completed multiple visits to her elected officials both locally and inHarrisburg, joined several healthcare rallies (pictured), and created a t-shirt for a project that expresses the importance of home- and community-based services.
Jean Friday, who currently serves as President of the PA Alliance for Retired Americans, has spent several decades advocating for access to critical programs and services like affordable health insurance. In the early 1980s, it was a Reader’s Digest article entitled “ No More Free Lunch for the Middle Class.” that sparked Jean’s interest; several years later, with the Clairton Coke Works in a lockout, Jean found herself helping fellow union workers file for insurance benefits. Although Jean became a retired steelworker in 1990, she continued the advocacy: “It seems like I have always been involved in health care,” Jean said. Between 2002 and 2008, she served as a national board member with the Steelworkers Organization of Active Retirees (SOAR), and in 2004 joined the PA Alliance for Retired Americans (ARA), a grassroots movement to mobilize retired union members, older adults, and the community in social and economic justice.
In the midst of federal and state budget deficits, the future of safety net programs is at risk, along with the health and well-being of millions of older adults and persons with disabilities. In addition to programs like Medicaid and Medicare, the Affordable Care Act (ACA) also faces significant challenge with the upcoming presidential election, and testimony scheduled to begin before the Supreme Court this month.
“Early on, I was skeptical of the ACA,” Jean said. “The scope was overwhelming, and people are often afraid of what they don’t understand.” It was not until Jean heard of a family with two young boys who were diagnosed as having Batten’s disease, an extremely rare genetic disease which can be fatal in the late teens, that she understood the potential impact of the ACA. Although the boys were covered by insurance, the expensive treatments were experimental and not covered expenses. Various groups were attempting to raise money for their treatments which could cost as high as $500,00. They needed insurance coverage to facilitate treatment and the ACA would provide the coverage they needed.
“We have become so divided with insurance coverage over the years,” Jean said, “but now we will finally have access to comprehensive coverage and benefits that will basically be the same for everyone.” Jean cited “education as the key to changing public opinion of the ACA: People who experience the benefits see that we need the law”, she said,” but with the majority of provisions on hold until 2014, a lot of people are still waiting to find out where they fit in. Imagine their surprise when they will no longer be denied coverage due to a pre-existing condition or face bankruptcy because of catastrophic health care costs.”
“The upcoming election will determine all of our social programs,” said Jean, “and if we don’t complain, they think we like it.” Jean stated the need to come together as a community on these issues, saying that sometimes we need to speak out and advocate for ourselves. “We have so many tools available to us today,” she said, “there are so many ways to get involved, and it gets easier as you do it.”
As a person with a disability, Sue Etters understands the importance of dignity and respect within the health care system. In December 2009, Sue was struck by a car, an accident that required hospitalization and several months in a nursing home. According to Sue, steps taken by both the hospital and the nursing home helped make her transition back home successful. A comprehensive discharge plan helped Sue learn about shower benches, hand-held nozzles, and a walk-in tub, all of which help Sue remain independent and living in her own home.
Many patients like Sue depend on comprehensive and coordinated care to transition successfully and avoid re-admission. Nearly 20% of all Medicare patients are re-admitted to the hospital within thirty days of discharge (www.CommunityCatalyst.org), many times because care was not coordinated properly or the patient did not understand the discharge instructions.
Sue credits her success to the fact that care was centered on her needs, and the treatment plan presented in a format she could understand: “It really made me feel like they cared,” Sue said, “showing compassion and concern for the patient is so important.” Sue also credits her successful transition to the comprehensive discharge plan: “They told me about different devices they had for the disabled that I honestly did not know about,” she said. Post-discharge, patient surveys completed over the phone by a nurse tracked Sue’s progress and also contained questions about the quality of her care.
Sue is a tremendous advocate and actively involved in the PA Campaign for Better Care. Sue completed the Lift Up Your Voice! advocacy training in June 2011 and, since that time, joined the monthly Campaign calls, wrote a Letter to the Editor that was published in the Pittsburgh Post-Gazette, visited her local elected officials, and created a t-shirt for a project that expresses the importance of home– and community-based services.
Until 4 years ago, Chari was a healthy and active 67 year-old who was passionate about advocacy and her community. Chari describes her experience in the health care system as a four-year journey that started with a fall at the grocery store and ended in a nightmare she is still struggling to accept today. “I was at the store,” Chari said, “when I started to feel dizzy and fell. They took me to the hospital, where I went into emergency surgery to repair a hole in my heart.”Chari described a quick recovery, saying she was back to her busy schedule in just a few weeks, though she noticed feeling unusually tired and worn out. “My recovery never really progressed past that point,” Chari said, “and I started to worry that something else was going on.” A primary care physician (PCP) diagnosed Chari with Type II Diabetes, and told her the condition could be monitored to control the dizziness and fatigue. With her health continuing to deteriorate,Chari sought a second opinion and said she could not believe it when she finally found a medical professional who would take her concerns seriously. Nearly two years had passed between the initial fall at the grocery store and the diagnosis Chari received with the new PCP: Hypertrophic Cardiomyopathy. “My heart was severely enlarged,”Chari said, “and was not able to adequately pump blood, which caused the dizziness and weakness.” With medication and a new PCP to monitor the condition,Chari scheduled an appointment with a cardiologist and slowed down the pace of her daily schedule while she waited. “I was scared and I was exhausted,” she said. “One day, I was at the store and I had to sit down in the middle of the aisle. I was so tired, and I just could not get back up.”
On Mother’s Day,Chari attended a football game with her 10 year-old grandson. He scored a touchdown to win the game, and Chari jumped up to cheer and run down the field, not knowing how that day would end up changing her life. Halfway down the field, Chari started to feel dizzy and weak, then experienced a heart attack that caused her to fall, breaking her leg in several places as she hit the field. On the way to the hospital,Chari experienced an additional period of cardiac arrest, and upon arrival, taken into emergency surgery to install a pacemaker. “Most of the details are still hazy,” she said, “but later I was able to read through my medical report to find out exactly what happened: I had been in recovery only a short time before I started to code, at which point they started a second emergency surgery to put in the defibrillator. I went into a coma, and woke up nearly one week later to my daughter’s voice telling me to open my eyes. I could not talk, and had no idea what had happened. My leg was in a cast, and I was told that they had also found renal failure and damage to my liver and lungs.”
One moment, Chari was delighted and celebrating with her grandson, and the next she was in the hospital with a week of blank time. “I was so worried about the mud on the field,”Chari said, “that was what I kept thinking while in my hospital bed: that I had just been hoping not fall in the mud while jumping and running down the field.” The next couple of days, Chari said she was scared to move or breathe with the scar on her chest a constant reminder of how fragile her heart had become. “I can still feel the outline of the box and the wires,” she said, “and even today I still get scared and panic when I think about what happened.” At that point,Chari had spent a week in recovery and started to make progress. She was told an additional surgery was needed to fix the break in her leg, and with a steel plate and twelve screws in place,Chari got ready to leave the hospital and start rehabilitation.
With a detailed discharge plan and specific instructions about medication and physical therapy,Chari was told to expect four to six weeks at the post-hospital center.Chari was excited to heal and get back to her life, but it would be September, nearly four months later, when she would be healthy and stable enough to leave. “The experience caused a scar,”Chari said, “not just physical, but on my heart, and on my mind.” While at the post-hospital center,Chari developed a constant pain in her back and was also concerned about an ache in her leg, but was told she was fine and had nothing to worry about. Nearly one week later, staff continued to ignore the pain, and Chari called 911 on her cell phone. At the hospital,Chari was told she was severely dehydrated and her kidneys had started to shut down. She spent several days in the hospital with IV fluid and antibiotics, at which time her orthopedic doctor also stopped by to check on the progress of her leg: “I instantly knew something was wrong because of his face,”Chari said. “He told me that the sutures had been scheduled to come out nearly two weeks ago, but were still in my leg. Not only that, but I had developed a staph infection.”
“I knew I was not receiving the care I needed, but I had nowhere else to go,”Chari said. “So I went back to the post-hospital center, again with a detailed and specific discharge plan. I hoped the quality of my care would improve because of the incident with the hospital, but it did not. I went eleven days without a bath, was not taken to the bathroom when I asked, and started to notice that my leg wound was being ignored.” One day, Chari insisted that her leg needed to be properly bandaged and cleaned. The night nurse took off the bandages and looked down; with a shocked expression, she told Chari she could see the hardware in her leg and a hole in the ankle: “I started to panic, and asked to go back to the hospital. They told me it was not necessary, but I demanded it.” While at the hospital, Chari had a total of four surgeries to fix the damage to her leg. Because the staph infection had progressed, Chari was told she could potentially lose her leg. Luckily, she said, they were able to save the leg and also completed a surgery to fix the hole in her ankle. While Chari had initially expected only four to six weeks in the post-hospital center, she now faced an additional ten weeks of antibiotics, rehabilitation, and physical therapy.
Today, despite the fact that Chari still faces struggles with her recovery, she continues to be a strong advocate and active in her community. In the midst of everything she experienced, Chari was able to recognize how quality and patient-centered care helped support her recovery. Not only were medical staff available, at every step they told her what would happen and why; the discharge plan was comprehensive and clearly communicated; and the care was truly focused on Chari and her needs. The quality of care Chari received with her PCP and at the hospital was a stark contrast to the horrors endured at the post-hospital center, and it is that experience that Chari holds onto today.
Since taking on the role of caregiver for my aging mother, I have noticed a breakdown in communication between hospital systems and long-term care facilities. I have often found myself attempting to sort out my mother’s record of care because the hospital or care facility failed to contact any doctor not affiliated with the institution. In the beginning, we had a primary care physician who was kind and careful with my mother. On several occasions, he sat down with me to identify the specialists we needed to speak to and even told me what questions to ask when we got there.
Today, I do not feel that the care my mother receives is coordinated. We see several doctors and always have a lot of questions, like why her physical therapy was terminated, how progress in her treatment was monitored, and who made the actual diagnosis of her dementia. I have learned an important lesson: that YOU are the only one who can advocate for your loved ones. So, I was a pushy broad when I needed to be and I figured out how to advocate for my mother.
I have also learned the value of care that is coordinated between doctors and also health systems. You need to know the questions to ask and who to speak to, especially with teams of doctors and separate institutions that provide care. I did not think my mother’s care was centered on her, just like I do not feel my care is centered on me. Health care seems to focus only on what it takes to make money and what keeps the institution in control. We need to keep the individual in mind, and take steps to be sure that they are informed, consulted, valued, and understood.
Barbara became a full-time caregiver for her husband. This is Barbara’s story, as told by Joyce Schlag, LCSW.
In 2007, I became a full time caregiver for my husband of 30 years. He suffered a series of strokes. There was no one to help with his daily care needs. I left my full time job to be his caregiver and thus lost my own health insurance. My husband needs assistance with all of his personal care, help with his medications and mobility. He depends on me to take him to his doctors’ appointments, to give the doctor information about changes in his condition, and to ask questions when further information is needed.
Two years ago, I took my husband to a stroke support group. We met with other stroke survivors and their caregivers. At first, I only noticed the survivors and not the people providing their care. At a certain point, I looked across the table and realized that caregivers are separate people who have their own needs, some which are similar to mine and other needs specific to their situation. I realized that some of the caregivers could be going through even more than I. Until then, I didn’t even identify myself as a caregiver. After that, I was able to tell myself and others, including my husband’s doctors, “I am his wife and his caregiver.” This was my starting point for forming a caregivers group.
As I focused more on what caregivers need, I decided that we need some time to break away from the survivors, to share time together, and to figure out how we can take care of ourselves. As caregivers we need to recognize our own individual needs. This is especially important when our day to day experience is filled with thinking about and anticipating our loved ones needs. The group gives us the opportunity to share our ideas and get encouragement to pursue our own goals. It’s not selfish to do the things we like to do or to share our thoughts and feelings with others. Barbara advises caregivers, “You can be a caregiver and still be the person who you are. In the end, both you and person you are providing care for will benefit.”
“I dread being in the hospital, that’s why in 2009 when I acquired a MRSA infection in my leg, I was so happy that I would be able to remain in my home and still receive treatment,” Janet Evans, a Lift Up Your Voice graduate, shared with the CHC staff. “It’s horrible when I have to spend time in a hospital. I have a hard time doing certain things on my own and without my special medical equipment like my remote control bed and accessible bathroom I have a really difficult time.” Understanding Janet’s situation, her doctors worked with her to quickly get the infection under control in a few days, and then were able to send her home with the help of a visiting nurse. The visiting nurses assisted Janet with her bandages and cleaning her leg on a regular basis for almost four months. “The nurses kept in direct contact with my foot doctor and everything was taken care of right away. If I needed something I just asked. My pharmacy even delivers my prescriptions right to my home. I try to teach others to speak up! It is important to let your doctors and nurses know what your needs are so that they can help.
At age 52, Dan had his right hip replaced due to bad arthritis. The operation left him with foot drop. After a short stay in a rehab hospital and time, he gradually regained a good percentage of motion in his foot . Seven years later in 2007, after the right hip replacement, he underwent a left hip replacement.
In March 2010, a routine follow-up visit started a year long ordeal that has taught him resilience and survival in our complex health care system. During this visit, Dan told his doctor about a small swelling, a slight discomfort in the left hip. His doctor felt the swelling through his jeans and told him that it was probably bursitis. Dan checked the internet and after a little research believed it could be bursitis. However, when the abscess quickly grew to the size of a softball, he returned to his doctor who admitted him to the hospital the following day for a surgical debridement (removal of the dead tissue).
Dan was hospitalized 2 additional times for surgical debridements and IV antibiotics. Home life became a maddening routine with the PICC line—a kind of tunneled IV line in the upper arm, oral antibiotics, wound care and working the wound vac, whose constant beeps and alarms seemed to baffle the home nurses. Writing in his notebook and charting progress on his illness preserved Dan’s sanity and kept him focused on the day-to-day details of his treatment. His home nurses didn’t seem to understand the operation of the wound vac and didn’t feel that it was their responsibility. Dan eventually changed home nursing service to ease the wound vac and other problems. Doctors were debating on causes of infection and the treatment of the infected hip.
Four months later, the infectious disease specialist prescribed Zyvox, an expensive oral antibiotic. His orthopedic doctor advised continuing with an IV antibiotic, Vancomyacin. Dan yielded to his infectious disease doctor and went with the Zyvox. He experienced some of the side effects, rashes, nausea and neuropathy. His feet and legs were getting numb after several months on this medication. The neuropathy still affects him.
At one point, he had difficulty walking, due to shortness of breath. He saw a cardiologist, who prescribed a Holter to monitor his cardiac system and a stress test. He was diagnosed with atrial fibrillation. Now, Dan is on doxycycline, and it appears that his infection is under control. Perhaps one day, he could get off antibiotics.
As a result of Dan’s hospital experience he realized how important it is to become a consumer health advocate. He actively participates in CHC’s Healthy Hospitals work group that is focused on decreased hospital readmissions and developing consumer advocates. His advice to patients is “to take notes when they are seen in the outpatient or inpatient settings, to keep a notebook to write down dates, time, names of doctors, nurses, reasons, types of medication given, tests ordered, etc., and to have a friend or family member present at all times.” When patients are at an appointment or in the hospital and don’t feel well or when they are medicated, Dan suggests that doctors write down the explanation and plan of treatment so that patients could read or refer to them later. These seem like simple, common sense advice, but in the fast-paced, protocol-laden, priority-jumbled health care system, patients/consumers do need to take these basic steps to look after themselves. Dan hopes that this chapter of his life is coming to a close– the hip infection, the antibiotics, the doctors, hospital, and testing!
Expectations! Great expectations! Health care on a certain level is played out as a series of expectations; expectations delayed, fulfilled, or disheartened.
Beverly is a veteran of diabetes, battling its symptoms for almost 20 years. Recently she had fallen and developed leg and ankle pain so she went to her usual hospital to be checked out. She did not eat and did not take insulin that morning. She expected her leg to be examined and an x-ray, ordered, and she did receive that care. She was told that nothing was broken, but no specific diagnosis was given. She had history of gout, but this did not appear to be gout, perhaps because it was bruised. She was given a pill for pain, was told that it was Tylenol but different from the Tylenol she normally took at home. She expected this hospital to have all her records since she had been coming here for years. Uncertain whether it was due to the comfort of that thought or the effect of the medication, she fell into a deep sleep.
Six hours later, after having gone to the ED to have her leg checked out, Beverlywoke up dazed and confused. It felt like someone had turned on the faucet, like buckets of water poured over her head. Sweat kept coming down her face, her neck, and body. She just remembered the emergency room staff running in, and it was not until a nurse with a glass of orange juice urging her to drink and someone yelling blood sugar of 30 that it dawned on her that she had just experienced a hypoglycemic episode. As she recovered from this dreamless nightmare, still amazed that her body could produce so much sweat, she recounted the few prior hypoglycemic events that she had previously experienced, but nothing like this one. Even though she was a known patient at this hospital and her records were available—thick stacks of chart that she was known for and the understanding that “everything is in the computer,” everyone forgot that she was a diabetic. Things do get crazy in the ED, and sometimes patients are left alone for a long time or forgotten. She now wonders if they ever checked her records.
Beverly was admitted overnight for observation, got an IV in her neck for hydration, and was discharged the next day. A home nurse promptly made a house visit, followed by a physical therapist. She was even referred to a dietician and received all the attention for her diabetes that she did not expect—a blessing in disguise. Since discharge, she has learned to increase protein in her diet, and her blood sugars have been in good range. Her ankle has turned more black and blue since the ED visit, so perhaps she did injure it somehow. It is a reminder of the fateful ED visit and hospital where unexpected things often do happen. Patients likeBeverlynaively expect familiarity, having had meaningful interactions with the system personally, structurally, and virtually (EMR speaking), but the health care system has, on more than one occasion, failed on these 3 levels despite safeguards. To some clinicians,Beverlyis an older diabetic woman with particular leg pain; to others, she’s a lady with ankle sprain or one of many faceless patients or statistics admitted through the ED with unexpected outcomes and complications. Beverlyprefers the first scenario–an individual with unique circumstances and needs, seeking attention and treatment in an impersonal sterile technological setting that many patients such as she has come to accept as an extension of her medical home.
“I am blind and of course I can’t drive. With the impending Port Authority budget cuts there will be no bus transportation where I live inMt.Washington. Access fairs are going up to $6.30 minimum to go anywhere. I am living on SSDI income and work at a part-time job. I have multiple degrees, but my education does not help in this situation. I don’t know how I am going to manage to get the things that I need to stay healthy.”
After the passing of her parents, Angela inherited their home inMt.Washington. At that time, there were several shopping districts and seven local pharmacies in her neighborhood. Now, bars have taken over the shopping areas leaving Angela with a forty-five minute walk to the only grocery store on the Mount, Foodland. “Getting my medicines is a serious problem. My local Rite Aid always has a long wait (Access will not wait for me!) and no prescription delivery services. My other option is to use the Medicine Shop that has limited hours and extremely costly medicines. Because I am faced with the Medicare donut hole where I have to pay for my prescriptions on my own, this is an issue. My only choice is to pay Access $16 dollars round trip to take me to the Costco at the Waterfront where I can get my Asthma inhalers. I have no choice, it saves me $100 each month! I just have to worry about Access showing up for my trip.”
Angela stated “It feels like I am living in hell. Soon there will not be any bus transportation and I will have to walk ¾ of a mile to get to the Trolley stop. I am blind. I don’t know how I will make it. I might have to move from the house my parents left for me. Rent is unbelievable in places likeOaklandor Shadyside where there is adequate bus service. I really don’t know how I could ever afford it or what I will do.”
Most sore throats are caused by a viral infection, and most children recover from them uneventfully, without much recall, but Michelle’s memory of a four year-old child’s battle with strep infection haunts a lifetime. When her mother’s concerns were not taken as something more serious, that sore throat turned out to be rheumatic fever. Michelle remembers the prolonged hospitalization, “walking like a duck,” gastrointestinal side effects, psoriatic-like skin rash and the chorea. It took her over a year to recover, and this is the short version. It seems as if the phrase “the doc did not listen” echoed as the unfortunate series of events snow balled and crashed upon her fragile childhood.
Fast forward 14 years later to high school, a little cramp in her calf muscles mysteriously turned into muscle atrophy and 6 months in a wheelchair. Michelle still has vivid memory of her dad carrying her down 2 flights of stairs and spending close to 2 weeks in the hospital. Certainly there were MRI and muscle biopsy among other tests, which were all a blur compared to the phrase “waiting to hear back”–something that was uttered again and again from her primary care physician. Communication between her PCP in Johnstown and the specialists in Pittsburgh was piecemeal and scattered, which resulted in a long waiting game. She had some physical therapy but no other specific treatment. No one could provide a diagnosis or any explanation to what had happened. No doctor attempted to coordinate her care or to get everyone involved in her care altogether.
Michelle relocated temporarily to her grandmother’s house because it was easier in her one-level home. For a young girl suffering from some unknown malady that relegated her to a wheelchair, the starring and the gawking of strangers and familiar faces became just painful reminders of the failings of our health care system. The school made extra accommodation for her wheelchair in order for her to study in the cafeteria or the library, and she attended summer school to graduate in time! Against all odds she survived her senior year and even made it to the prom, out of her wheelchair and under the watchful eyes of her parents. Michelle recovered from the rheumatic fever and the near paralysis, but it was the interaction with the health care providers that has left an emotional scar even though the physical healing had long begun.
“That which does not kill us makes us stronger” and “To live is to suffer, to survive is to find some meaning in the suffering.” Michelle has really taken those two quotes to heart. Certainly these experiences have made her stronger and more resilient. She learns to ask questions and not wait but call. She advises others to ask their doctor directly; then ask the office manager if you don’t get the answer you need. Also, you should try the health insurance company and another round of calling the office manager, doctor and health insurance company if needed. As your own advocate, it is acceptable to look for another doctor or another practice. As a patient advocate and having worked with doctors, Michelle believes that doctors as a whole are good patient advocates, but they need a supportive team or staff to be able to get the job done!