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Patient Agitation in Alzheimer’s Disease: Implications for Patients and Caregivers

Real World Health Care recently sat down with Anton Porsteinsson, MD, Department of Psychiatry, University of Rochester School of Medicine. Dr. Porsteinsson is the Director of the University of Rochester Alzheimer’s Disease Care, Research and Education Program and has devoted his career to the care and study of individuals with memory disorders. Following up on his recent randomized clinical trial of citalopram, we discussed why it’s important to focus on treatments for AD-related agitation — both for AD patients and their caregivers.

Real World Health Care: Why is it important to study agitation in patients with Alzheimer’s disease?

Anton Porsteinsson, MD, University of Rochester School of Medicine

Anton Porsteinsson, MD, University of Rochester School of Medicine

Anton Porsteinsson: Agitation is quite common in people with AD. It has a huge impact on their quality of life, as well as their family members’ and caregivers’ quality of life.

RWHC: Prior to your CitAD Randomized Clinical Trial, why had previous pharmacological treatment options been deemed unsatisfactory?

AP: A number of medications have been studied over time for this condition, including atypical and conventional anti-psychotics and mood stabilizers. But the efficacy they showed, if any, was modest at best. At the same time, these medications have serious potential complications such as increases in cerebrovascular events, sedation, falls, Parkinsonism and even increased mortality.

RWHC: Your trial focused on patients receiving psychosocial intervention. Why is psychosocial intervention important for AD patients?

AP: Medications should rarely be the first line of treatment for AD patients. Not everyone needs to be treated with medications. That’s why it’s important to evaluate the root cause of the agitation problem. Is the patient agitated because of something going on in his or her environment? I remember a situation from a few years ago when I was seeing a summertime spike in agitation-related consultations from patients in a particular nursing home. It turns out the nursing home didn’t have air conditioning. So it’s not surprising patients were bothered and agitated. In AD cases, agitation may have as much to do with your roommate as your receptors.

Psychosocial intervention helps to channel nervous energy and restlessness by involving patients in something purposeful, or even giving them some sort of outlet, like an area to pace around where they are safe and not in anyone’s way.

RWHC: The trial also focused on the effects of citalopram on caregiver distress. Why is this an important area of study?

AP: Caregivers, who are often family members with little or no medical training, may not understand what is going on with their loved one. They may take the patient’s behavior personally, which can cause a great deal of stress. Even if you’re a saint, it can build up and take a lot out of you.

Providing care for someone with AD is very hard under the best of circumstances. It’s even more difficult when the patient is verbally or physically aggressive, uncooperative, or agitated. Caregivers need advice, support and tools to help them handle the situation. They need to learn to give themselves breaks, that it’s OK not to be perfect, and that help is available for them. I find that a lot of caregiver stress is alleviated when, as health care providers, we listen to them and take their concerns seriously.

Caregivers need to know that agitation in AD patients is common and that there are ways to deal with it. Providers must connect them with resources like the Alzheimer’s Association and community agencies. We need to help alleviate their concerns about finances. And we need to help them set up a working plan on how to deal with their situation — to bring order to the chaos.

RWHC: How will the results of the CitAD Randomized Clinical Trial inform your future AD research?

AP: This trial was extremely educational for the research community. It was one of the first studies to show that a medication was effective in multiple ways — both on a clinical scale in reducing agitation among patients and in reducing caregiver distress. We also found efficacy for other AD patient behaviors like anxiety, irritability and delusions or hallucinations.

On the flip side, we discovered some complications. Citalopram has been used widely for decades with vulnerable populations. But in the last five or six years, it’s been found to not be as safe as once thought. It has the traditional SSRI side-effects of mild gastrointestinal distress and mild sleep pattern disturbances. But it also has been found to have an impact on cardiac conduction, especially in higher doses. In fact, when we were about three-quarters of the way through the study, the FDA suggested that, for people older than 60, there should be a dose limit of 20mg per day.

We confirmed this finding in our study. We also saw a drug placebo difference on a cognitive measure, the MMSE (Mini Mental State Examination). It isn’t clear if this was due to baseline differences between the two groups and drift toward the mean, as the placebo group improved on the MMSE and the drug group saw a modest decline, or if it was a true modest cognitive toxicity. Until proven otherwise, we have opted to assume this is a potential side effect and we warn against it.

For our next study, we considered testing a lower dose of citalopram (20mg daily), but then we found that the active isomer of citalopram (S-citalopram) seemed to be better correlated to benefits seen in the study, while the inactive isomer (R-citalopram) more correlated with the adverse effects. S-citalopram is available as a generic drug, approved for depression and anxiety. We intend to study that drug further.

RWHC: What are some other areas of AD research you’re currently involved in within the URMC Memory Care Program? What do you see as your most promising area of research?

AP: We have a broad portfolio of research programs at URMC. We’re one of the more active academic-based clinical research programs in the country. Currently, we’re conducting two behavior-focused studies. One is ongoing and is based on positive findings on dextromethorphan hydrobromide and quinidine sulfate, with a new formulation that uses less quinidine. We’re also looking at methylphenidate for treatment of apathy in patients with AD.

We’re also investigating new imaging techniques and various biomarkers to improve our ability to identify those at risk. And, we’re working to find better ways of monitoring the progression of the disease and response to treatment through the ADNI study, which just received a fourth wave of funding.

Other areas we’re investigating include prevention studies with people who are cognitively normal, but who have elevated beta-amyloid or genetic biosignatures that indicate future pre-disposition. We’re looking at a passive and active vaccine against amyloid production. And we have a number of different studies on the prodromal stage of AD, working with beta secretase inhibitors that block the production of beta-amyloid.

It’s actually a very exciting time in Alzheimer’s disease research. We’re seeing improved funding from federal sources and a rejuvenation of interest from the pharmaceutical industry. I’m quite optimistic that in the next five to ten years, we will make substantive progress in terms of our ability to limit AD. I think it’s overly optimistic to expect a cure in that timeframe, but we can certainly make a dent, particularly from an early intervention standpoint. Treating this disease early is the critical factor.

With Great Health Comes Great Responsibility

Accountability. As children, we are taught that our actions have consequences and that we must be responsible for our own behaviors if we are to live as free and independent adults.

Linda Barlow

Linda Barlow

This simple life lesson has been shaping the healthcare landscape for some time now as hospitals, individual clinicians and other healthcare providers face increasing requirements to participate in Accountable Care Organizations and provide performance measures indicating accountability for patient outcomes—efforts that have successfully improved the quality of care for many. But what about the patients themselves?

“The greatest untapped resource in healthcare is the patient,” says Don Kemper, MPH, Founder and CEO of Healthwise, a non-profit organization with a mission to help people make better health decisions. “The time has come for people to ask more of themselves in managing their health.”

According to the authors of a report of the American College of Cardiology/American Heart Association Task Force on Performance Measures, patient participation and engagement are integral to the success of any treatment plan–a position echoed by the American Medical Association and the Institute of Medicine.

So how can we, as consumers of healthcare services, be more accountable for our own care? The authors of the ACC/AHA report suggest that “the general framework of shared accountability is predicated on partnerships between patients and clinicians, in which patients play an active role in setting goals, making treatment decisions and assessing outcomes. Ideally, patients would be aware of what to watch for, contact their clinicians when symptoms arise, learn about their condition and what they can do to improve their health, implement agreed-on treatment plans and lifestyle changes, and follow up with their clinicians to assess outcomes and adjust the treatment plan.”

“Developing a trusted relationship is key,” adds Nancy Carteron, M.D., HealthWell board member, rheumatologies, and autoimmune disease specialist at California Pacific Medical Center in San Francisco and Associate Clinical Professor at the University of California at San Francisco. “Patients need to feel heard, but from a physician’s standpoint, the limited time they have with patients can make that hard to accomplish, especially for complex illnesses. It may require the provider to restructure its practice. And if the patient does not feel their best interest is being served, they should try another provider or system.”

Healthwise’s Kemper suggests that patients focus on “patienthood”—the self-management behavior that ensures we either give to ourselves or get from others the care we need to best manage our health risks and medical problems.

“Each of us falls somewhere on the continuum of patienthood,” Kemper says. “The extremes can range from annual tooth brushing to self-surgery, but most of us fall well in the middle. And for most of us, it’s possible to do more for ourselves, especially with the right information, tools and expectations.”

“We should feel accountable for asking questions anytime we don’t understand our options, anytime we think something may not be right with our care, and anytime we have an idea for how we might contribute to the care,” Kemper adds. “And we should be accountable for adhering to any self-care plan we have agreed to follow—or to report why we have veered away from it.”

Are you someone who has started to take more personal accountability for your own care? Tell us what you’ve done to be a healthier, more involved patient. Are you a healthcare provider who has seen an improvement in patient outcomes when the patient is highly involved in his or her own care? Share your stories with us in the comments section.

Patient of the Month Revisited: Charles Fazio’s recovery from heart bypass surgery, kidney failure, and financial crisis

Real World Health Care is on its summer break. During this time, we will be revisiting some of our Patients of the Month. Please enjoy these inspiring stories from the patients we serve.

Charles Fazio wasn’t sure how he could survive another health crisis.

Charles Fazio

Just three years after his four-way heart bypass surgery, he developed end stage kidney failure. In the worsening economy, he had lost his job as a traffic signal technician in Norfolk, Virginia and had since become too sick to work. On top of his serious health problems, Charles’ financial worries were overwhelming.

“It was like after having all of these other things happen, now I have to deal with this, too,” said Charles. “It was a big shock.”

Charles’ disability benefits had not begun to come in and he had to sell off his possessions to afford his medical expenses. Eventually, he lost his home and found himself homeless for several days.

“One night I stayed in my mom’s nursing home. I went in to visit her and I pretended like I just fell asleep in the chair next to her,” Charles said.

In short, it had been a rough few years, to say the least.

Charles was treated at Sentara Norfolk General Hospital and received dialysis for a year and a half at the Virginia Commonwealth University (VCU) Medical Center. Completing the process for Medicare allowed him to afford his dialysis treatments and living expenses.

Then, one day in 2012, Charles’ regular doctor appointment morphed into an overnight kidney transplant. “I was scared to death,” Charles said. “I didn’t know what to expect. I had read up on everything thoroughly, but when the time comes, you really just have to face it.”

By 4 o’clock the next day, he had a transplant kidney.

Charles continued treatment and testing at the VCU Medical Center after his operation. His recovery went smoothly, but he still required numerous medications and immunosuppressants. Again, he couldn’t afford the copays.

That’s when doctors and social workers introduced Charles to the HealthWell Foundation, a nationwide non-profit providing financial assistance to insured patients who are still struggling to afford the medications they need (and sponsor of this blog).. Charles was given a grant that enabled him to afford his medications.

“The grant I got from [HealthWell] took a lot of worry off of my back, a lot of tension,” Charles said.

With his financial stress reduced, Charles was better able to emotionally cope with his condition. “The help I got from Norfolk General, the VCU and [HealthWell] was the turning point for all of my frustrations, for feeling sorry for myself,” he said.

Now, Charles is doing quite well. At a recent annual check-up with his doctors at the VCU, his blood tests came back looking good. His transplant kidney is holding up well and his medication is stable. “You never know how you’re doing, even though you’re dieting and doing what your doctors are telling you,” he said. “In the back of your mind you’re asking, ‘How am I doing?’ and only a doctor can tell you.”

“But they said I’m doing well, and I feel good too.”

Charles is optimistic that his series of unfortunate events may now be in the past. He is recovering well and doing his best to stay healthy in his eating habits and his lifestyle. “When the weather’s nice, I try to take a walk once a week, and I hold on,” he said.

One step at a time, Charles. We’re all glad you’re here.

Categories: General

Patient of the Month: Alex Defio Shares His Story for Men’s Health/Cancer Awareness Month

Alex Defio did not feel sick on the day he was told he was going to die.

A construction worker and amateur poker player, he considered himself a generally healthy individual. On this day, however, Alex was being dealt a hand that no one should ever have to play; he was diagnosed with stage IV stomach and liver cancer. It was terminal.

Alex Defio

Alex Defio

Alex remembers the doctor advising him – coldly – to return home and seek hospice care for the remaining months he had to live. “It knocked me out. I couldn’t believe anyone was talking to me that way,” Alex recalled. “When you know you’re going to die, when someone tells you the time of death, that is very scary.”

Like many cancer patients, Alex felt fine until he began chemotherapy. Bed-ridden for months, he could no longer work. Although he had been receiving financial assistance from his home state of Arizona, the budget for his program was soon cut.

Alex was able to access social security, but it did not cover everything. He watched his money run out knowing that he would be unable to cover his medical expenses. He tried turning to non-profits and charities, but to no avail. “I’d spent most of my life donating to various [charities] and organizations, but when I went looking for help, everyone told me that I had such a rare cancer that nobody collects money for it,” Alex said. “Every place I went – and I went everywhere – could not give me any help.”

After two years struggling to put what little money he had toward his medical expenses, Alex sought help from his oncologist, Dr. Rakkar.

Dr. Rakkar introduced him to the HealthWell Foundation, a nationwide non-profit providing financial assistance to insured patients who still struggle to afford the medications they need (and sponsor of this blog). Through HealthWell, Alex was finally able to get the help he needed.

Since then, Alex has continued his treatment, which is restricted to chemotherapy. He knows he has not been cured and that surgery is not an option, but he has lived past his original prognosis and is grateful for every day he has.

Alex has continued to give to others and has donated to HealthWell. “I know that after I’m gone, there are still people who are going to need you,” Alex said. “The people that you help – and I’m speaking for people I don’t even know – if they’re cancer patients like me, you’re saving their lives.”

“I try to give back what little I have and hope it helps,” Alex added. “I will never be able to give enough for the help that HealthWell has given me. I am just so thankful you are there for us.”

And we are thankful for you too, Alex. During this Men’s Health/Cancer Awareness Month, we are honored to share Alex’s story and generosity.

How has cancer touched your life? Share your story in the comments section. For more information about seeking assistance from HealthWell, visit www.HealthWellFoundation.org.

Cultural Competency Key to Positive Health Outcomes

Early in my pharmacy career, a hospital social worker referred to me a deaf patient. He had a reputation for being rude and belligerent to providers. After our first encounter, I was no exception. However, after looking at health care from his perspective – slow communication, unthinking providers, long waits in the clinic – I had an idea.

Joel Zive

Joel Zive

Instead of counseling him with a pad and pencil, I counseled him in front of a computer screen. I made the font larger, and we communicated in this fashion. He was ecstatic! I learned that many deaf people communicate with a device called a Telecommunications Device for the Deaf (TDD), with which they can type responses and often learn to do so rapidly. Because I accounted for his unique point of view and modified my interactions with him accordingly, our relationship changed for the better.

For a provider, cultural competency involves understanding patients’ perceptions of their role in health care. When a provider or prescriber has that insight, significant improvements can occur in therapeutic outcomes. For example, cultural competency can aid providers in preventing drug interactions by determining which complementary and alternative medicines their patients use, as well as help improve patient adherence to prescribed therapies. This is especially important in minority communities, in which the devastating effects of diabetes, hypertension, and other diseases take a disproportionate toll.

Establishing this insight takes time that busy practitioners don’t always have. Fortunately, providers increasingly rely on capable, cost-effective partners: community health workers (CHWs). CHWs work in a variety of settings, including community-based organizations, AIDS service organizations, hospitals, and clinics. They are often of the same ethnicity as many patients and live in the neighborhood; in many cases, CHWs have already developed trusting relationships with patients and may have a better understanding of the nuances of how they expect or want to be treated. CHWs are also in a position to uncover problems that patients are unwilling to share with their physicians and other health care providers.

The positive effects of CHW involvement as provider extenders are well documented. For example, at the Gateway Community Health Center in Texas, CHWs played a valuable role in improving outcomes among people with hypertension and diabetes.

A critical area that can be enhanced by community health workers is complementary medicine. St. John’s Wort is one example of an herbal folk remedy that is sometimes used and endorsed by generations of family members for the treatment of depression, but that many patients may not report to their health care providers. This is significant because St. John’s Wort should not be taken with antiretrovirals. CHWs may be more effective than those ‘wearing white coats’ in learning about use of complementary and alternative medications and, when needed, explaining the dangers of drug interactions with sensitivity and compassion.

Research continues into the benefits of employing CHWs in pharmacies. Four pharmacy school professors at the University of Florida – Folakemi Odedina, Ph.D.; Richard Segal, Ph.D.; David Angaran, MS, FCCP, FASHP and Shannon Pressey – did a pilot project to see whether a CHW paired with a single community pharmacy could uncover medication-related problems that were missed by the pharmacist alone and improve outcomes in hypertension (view this short video for more information). In an interview with Real World Health Care, Dr. Segal said they teamed a CHW with a pharmacist to work cooperatively for 11 months to enroll 30 patients with poorly controlled hypertension (>140/90 mm Hg). The CHW was able to gather information about which patients were using complementary medicines as well as the barriers people were experiencing that affected their adherence to prescribed medicines. Together, the CHW and pharmacist developed a medication action plan that was informed by the added information the CHW was able to collect from patients. While four patients were lost to follow up, the 26 remaining patients showed a significant reduction in systolic blood pressure. The pilot program is being scaled up to involve 30 CHWs with funding from the Department of Health and the CDC. Segal concluded that clinical collaboration between pharmacists and CHWs should also be used for other disease areas.

What other ways can community health workers benefit patients in addition to increasing treatment adherence and decreasing the risk of drug interactions? Share your thoughts in the comments section.

Four Ways Data is Transforming Your Health

The increasing availability of data about health care in the U.S. is empowering patients to take charge of their care and quietly revolutionizing how patients are treated. Last month, the Centers for Medicare & Medicaid Services released data on which services were provided by over 880,000 health care providers, how many times each service was provided, and what the providers charged. Yesterday, top health and technology experts for the federal government and the Brookings Institution gathered to discuss how the growing catalogue of public health care data is leading to profound improvements in America’s health care. The event was hosted by Brookings’ Engelberg Center for Health Care Reform in collaboration with 1776 DC’s Challenge Festival.

Jamie Elizabeth Rosen

Jamie Elizabeth Rosen

Here are the top four ways that data transparency is already beginning to transform Americans’ health. The benefits are expected to grow as the data is analyzed, matched with other sources, and organized into user-friendly and accessible formats.

 

1.    Selecting the best doctor

When Farzad Mostashari learned that his mother needed an epidural steroid injection, he wanted to find out which orthopedic surgeon was the best at this specific procedure. So he searched the millions of medical claims recently released by the Centers for Medicare and Medicaid Services (CMS) to discover which providers were the most experienced in this procedure.

An interesting result emerged. “There is one provider who does more than everyone else combined,” said Mostashari, who is a Visiting Fellow at the Brookings Institution, where he is focused on payment reform and delivery system transformation. “He’s probably pretty good.”

As health care data increasingly becomes available, patients will have more information to make the most rational decisions for their health care, said Kavita Patel, a physician and fellow in the Economic Studies program and managing director for clinical transformation and delivery at the Engelberg Center.

Patel asks her patients why they choose to see her. “Nobody’s ever said: ‘I looked up your quality scores and saw that your out-of-pocket costs are less than the average provider in your area,” Patel said of her 12 years in medical practice. “This is one of the first times that everyone in this room can take out a laptop…and look at this data.”

Mostashari added that the data can be used to identify outliers. For instance, he found that while the average orthopedic surgeon performed controversial spinal fusion surgeries on 7 percent of the patients they saw, some did so on 35 percent. This knowledge empowers patients to choose providers that best align with their health care values and preferences.

 

2.    Reducing costs

The newly-released CMS data enables comparisons of the prices different providers charge for the same services. This data reveals that in some cases providers charge vastly different rates to Medicare for the same services, Mostashari said. The Wall Street Journal provides a consumer-friendly database detailing the types of procedures, number of each, and costs per procedure charged by individual health care providers.

Last year’s release of hospital charges led some hospitals that were charging higher rates to uninsured and underinsured patients than their peers to seek advice from CMS. “Some hospital associations called us and said, ‘We want to change. Help us develop new accounting practices to set prices more fairly for those who are uninsured or underinsured,’” said Jonathan Blum, Principal Deputy Administrator at CMS.

The ability to access and analyze a growing amount of data on procedures performed and their outcomes also helps patients and providers avoid low value services and make decisions about the relative risks and benefits of different procedures. Patel pointed out an ABIM Foundation initiative called Choosing Wisely that equips providers and patients with lists of procedures that should be carefully considered and discussed to ensure that care is supported by evidence, not duplicative, free from harm, and truly necessary.

 

3.    Promoting accountability

When health care providers know that their records will be publically available for scrutiny, they are incentivized to ensure that they won’t be embarrassed by what people find. This can profoundly change which procedures providers choose. For instance, one analysis revealed a wide disparity between the percentage of black versus white patients who were tested for cholesterol levels. “Simply asking providers how often they were doing [cholesterol tests], without any payment incentive,” removed this disparity, said Darshak Sanghavi, the Richard Merkin fellow and a managing director of the Engelberg Center. “This is one example of how simple transparency can improve health care and ultimately save lives.”

 

4.    Expediting spread of best practices

Jonathan Blum, Principal Deputy Administrator at CMS, has seen data transparency expedite the uptake of best practices by health care providers and public health authorities. For example, when analyzing the data on dialysis providers, CMS found that there was an uptick in blood transfusions by certain providers in specific geographic regions. “Our medical team got on the phone and called the dialysis providers and said: ‘Did you know you are doing more blood transfusions than your peers?’” The result? Those providers decreased blood transfusions, improving health outcomes for their patients. The same pattern occurred for nursing home facilities that overused antipsychotic drugs.

“I want to convince folks that you can change policy, you can change procedures, you can make things safer,” Blum said. “Data liberation can help us build [accountable care organizations], help us build better payment policies, help us reduce hospital readmissions. There is tremendous opportunity ahead for us.”

Bryan Sivak, Chief Technology Officer at the Department of Health & Human Services, added that data transparency is affording entrepreneurs from outside the health care sector – such as startups Aidin, Purple Binder, and Oscar – the potential to transform the health care system.

“We’re sitting on the edge of an incredible moment in history,” he said. “Everybody is looking at things in a different way because everybody understands that we have to do things differently.”

“Government data is a public good and a national asset,” said Claudia Williams, Senior Advisor for Health IT and Innovation for the U.S. CTO in the White House. “It’s something we have to release if we can to allow innovation and change.”

How do you make your health care decisions? Have you used any of these new tools?

Categories: General

Taking Charge at the End of Your Life

Tim Prosch is author of AARP’s The Other Talk: A Guide to Talking with Your Adult Children About the Rest of Your Life, a book that helps parents and their children create a partnership to plan for the years to come, guiding them through important conversations and decisions about finances, medical care, and day-to-day living—before a crisis happens.

Tim Prosch

Tim Prosch

What can happen if you put off your end-of-life health care decisions until “the time is right?”

The Terri Schiavo case, which culminated in 2005, can put the answer to this question in stark relief.

Fifteen years earlier, Terri had collapsed at home, suffered severe brain damage and was put on a feeding tube to keep her alive. For the next decade and a half, she was yanked back and forth in a virulent tug-of-war between her husband and her parents about how she would want to be treated. Ultimately the courts got involved, pulling her off her feeding tube for 3 days in 2001, again for 6 days in 2003, and finally for 13 days in 2005, when she finally expired.

All of this drama and heartache could have been avoided if her wishes had been put in writing and had been thoroughly discussed by all interested parties.

While none of us will ever know what Terri wanted done at the end of her life, it is safe to say that her on-again, off-again existence and her increasingly toxic family dynamic are not what she or anyone else would wish for.

 

How can you avoid Terri’s fate? 

To begin with, it’s important that you understand that health care at your end of life will be a family affair, not just a personal decision. In most cases, it is not about you personally taking charge. It is about you preparing and empowering your family to take charge as you approach that final stage.

The-Other-TalkThe reason for this collaborative approach is that it is highly likely that you won’t be physically, emotionally, or mentally able to direct the final proceedings. Collaboration addresses the challenge for someone acting on your behalf to weigh the options and make decisions and to articulate what should be done in a way that reflects your thoughts about the end of your life.

As a result, it is critical that you start these conversations now while you are mentally sharp. Quite simply, the longer you wait, the less effective these discussions with your family will be, due to the natural deterioration of the aging brain.

In preparing for the end game discussion, you’ll want to take steps in two critical areas: guiding principles and parameters for medical treatment.

 

Step 1. Establish Your Guiding Principles

The first step in making your family confident and empowered in taking charge when the time comes is for you to confront and define what “being alive” means to you as you near the end.

For some people, it is fighting for every last breath. “Even one more day would be important to me. I would do everything I could to hold on to life.”

For others, it is living intensely, yet comfortably, in the time remaining. “I would rather be able to do what I want, to be with my kids, to enjoy life, even if it’s for a shorter time.”

Of course, neither one is the better approach because it is such a personal choice. But if you start now to build a clear understanding of your preferences with your family and your doctors, you can dramatically increase your odds of getting what you want.

 

Step 2. Set Parameters for Your Medical Treatment 

Step 2 in taking charge of your life (versus abdicating it to the medical community) is to put your preferences in writing. Equally important is to distribute and discuss your wishes with your family members and your doctors to ensure that your goals are clearly understood.

An effective and relatively inexpensive way to accomplish this is to consult with your legal advisor, then draw up a health care power of attorney. This document establishes your designated agent who will make health care decisions for you if you are not able to do so.

If you are in the “do not prolong life at any cost” camp, you will also want to explore two health care directives: the living will and the do-not-resuscitate (DNR) order:

  1. The living will establishes that you do not want your death to be artificially postponed. It states that if your attending physician determines that you have an incurable injury, disease or illness, procedures that only prolong the dying process should be withheld and the medical focus should shift to comfort care. This document must be signed by two witnesses who will not benefit from your death.
  2. The do-not-resuscitate (DNR) order is different from the health care power of attorney and the living will in that neither your health care agent nor you can prepare it. Rather, it is a written order signed by your physician that instructs other health care providers not to attempt CPR if your heart has stopped beating and if you have stopped breathing during cardiac or respiratory arrest.

Once you have shared your “what being alive means to me” documents (the health care power of attorney and, if relevant, the living will and the DNR order) and thoroughly discussed them with family and doctors, you all should acknowledge the possibility of revisions. Every time your health status changes in some significant way, you should have another discussion to clarify your views and expectations.

It’s okay for you to move the goalposts on issues pertaining to the end of your life. You just need to make certain that the people in your world know that you moved them.

Do you have a living will or DNR? What did you learn through the process that you’d like for others to know?

Click here to learn more about The Other Talk and here to hear an interview with the author from AARP.

Nine Ways You Can Reduce the Pain and Fear of Needing a Needle

This is the second installment in a two-part series on what’s working to prevent and address needle fear. To learn more about needle phobia and what health care providers are doing, check out Part I: “A Shot of Courage for Those Who Fear Needles”. Click to view Amy Baxter’s TED talk on Pain, Empathy, and Public Health.

“Fear is the mindkiller. Fear is the little death.” – Frank Herbert, Dune

Amy-Baxter

Amy Baxter

In 1995, a scientific paper was published for the first time evaluating the prevalence of needle fear and its effect on accessing health care. Since then, studies suggest that the fear of needles is rising, afflicting a quarter of adults and two out of three children.

Needle phobia seems to be more likely in people who are sensitive to a light touch and sharp objects, particularly those with the “red head pain” MC1R gene. While most people acquire needle phobia around age four to six, about three to five percent of people have a genetic predisposition to become lightheaded or nauseated or even to faint.

But whether acquired or innate, fear not! Quite literally – here are nine ways to reduce the pain and fear of needing a needle at any age.

1. Pain Management.  When time permits, needle pain can be greatly reduced by using topical pain relief – specifically, topical anesthetic numbing creams and gels — which numb the skin in 20-60 minutes. Fun tip: use Glad® Press-N-Seal rather than the commercial medical covers. It is more comfortable to remove and much less expensive.

2. Let your brain do its thing.  Overwhelm other competing nerves with sensations that aren’t so painful. Studies have found that when someone’s hand is in ice water, they can handle more intense pain everywhere else in the body. This works both through something called gate control (e.g. cool water soothes a burn) as much as brain bandwidth. Vibration and cold have been studied together; when put between the brain and the pain (especially after numbing a shot area directly), they can decrease needle pain up to 80%.

3. Relax the muscles.  Pushing medication into taut muscles makes it hurt more, now and later. Even passively stretched muscles hurt. Rather than bending over and going for a gluteal stick, try lying on your side with the buttocks muscles relaxed. Do the same for thigh shots; sitting up causes the muscles to be active keeping you balanced, so go for a side position.

4. Distract your mind.  Counting and engaging in unrelated tasks can reduce pain by half. At a minimum, count corners, ceiling tiles, or holes in an air grate. Some studies have found that active engagement can be more effective at reducing pain for teens and adults. Drawing on an iPad game or finding items in “I Spy” apps, can work at any age.

5. Distract your senses.  The brain can only process so much at one time. Buy five packs of sugar-free gum, mix the sticks, pick one at random, and try to figure out the flavor. Drink a slug of a cold, sweet beverage. Taste and smell are great senses to counter paying attention to pain.

6. Focus on something you can control.  Whether you’re thinking about the health or life benefits of the shot, concentrate on that. Fertility shots, for example, can have an adorable payoff. Building an idea in your mind and mentally “going there” can help with pain.

7. Create a different sensation.  Pinching your own finger and focusing on that or forcing a cough have both been shown to decrease needle pain. Squeezing your toes, stretching your calf, or making any distant body part more noticeable to your brain will take attention away from the area of pain.

8. Be a scientist.  If you know you have multiple needle events coming up, keep records of what works best and what doesn’t. Being an observer, even of yourself, adds distance that can give you more control. More control = less fear. Less fear = less pain.

9. Speak up!  Let your care team know you don’t like needles, and let them know what you have found what works for you. “You know how some people pass out with needles? Shots and I don’t get along, so let me tell you what works for me. I really appreciate you listening to me; it makes everything go so much better for both of us. What seems to help me is this: “____.” Even if you haven’t ever gotten lightheaded or passed out, reminding care providers of people who have can help establish that you understand that procedural pain is important and you give them credit for appreciating it, too.

Do needles make you nervous? Have you found a strategy that reduces needle anxiety or pain? Post your experiences and tips to the comments section.

You can reach Dr. Amy Baxter at abaxter@mmjlabs.com.

Virtual Health Care: Your Questions Answered by a Telehealth Pioneer

If you follow the latest developments in health care, you may have noticed: telehealth has taken off. Our country is focused on making health care more accessible for Americans, and naturally, telehealth has emerged as a key innovation that can help to make this a reality. It’s an effective way to deliver evidence-based medicine – and it’s something that we as physicians can embrace right now.

Dr. Peter Antall

Dr. Peter Antall

As President and Medical Director of the world’s first telehealth practice, Online Care Group, I’m often asked a handful of common questions about telehealth. Here, I share the most common questions and my answers with Real World Health Care’s readers.

What is telehealth?

To me, telehealth is simple. Telehealth is a live video visit between a doctor and a patient from home or work. This differs from traditional telemedicine, which mainly connected hospital facilities to each other and relied on big, expensive hardware in clinical locations.

With telehealth, the patient can have a video visit with a doctor using every day consumer technologies that are becoming ubiquitous: a smartphone, tablet, or computer. There are other forms of telehealth on the market that use only phone or secure email; however, these visits do not allow for the same level of clinical patient evaluation. I have met with medical boards and associations across the country and found that live video is greatly preferred because it represents the closest interaction comparable to an in-person visit.

Do patients really want to talk to a doctor virtually?

For starters, let me just ask you when was the last time you shopped, banked, booked travel, made a dinner reservation, filed your taxes, or communicated with friends and family online. Chances are – if you’re like many Americans – you’ve done more than one of these things today, probably on your phone or tablet.

While the health care industry has done a great job of supplying information to patients online and has even started to offer patients the opportunity to book appointments online, information and scheduling stop short of what patients want and expect from health care: quality interactions with clinicians. To date, health care ‘transactions’ have only occurred at the intersection of a physical location and the supply of available clinicians. The industry can do better.

Over the last several years, a number of studies have shown that patients are rapidly warming to the concept of interacting with doctors online. Estimates suggest that half to three-quarters of Americans are interested in online consults, and I’d expect this number to grow as more patients have access to telehealth services and as more doctors offer such services to patients.

If you think about the patient experience today, it’s not surprising that most folks respond so positively to the value of telehealth. Consider the national average wait time to see a doctor of 18.5 days, not to mention the excessive wait time in certain urban and rural areas. And once you’re in the doctor’s office, that wait can be long, too, which you know if you’ve ever spent two or three hours in an urgent care clinic or emergency room waiting to be seen. Retail clinics are an option, but these are generally not staffed by a doctor and are often not available outside of normal business hours.

On the other hand, a patient can see a doctor in just a few minutes from their phone or tablet. For example, our wait times at the Online Care Group currently average less than 2.5 minutes, and there’s no appointment or travel required. So it’s not surprising that 97% of patients rate the service “very good” or “excellent”.

How do you examine a patient during a telehealth visit?

Examining a patient through video is different from in-person, though the fundamental rules of medicine still apply. The most important elements of any consultation – online or in-person – is taking a thorough history, asking plenty of questions, and doing a visual examination. Having a video connection with a patient is really important in helping to understand the patient’s overall demeanor and level of discomfort and stress, just as in the exam room. This gives me great insight into the patient’s physical and mental well-being. In terms of a physical exam, I’ve developed protocols to help our doctors guide patients through self-exams in order to provide empirical feedback that’s useful in making certain diagnoses.

One of our main tenets is that doctors must use their own clinical discretion when treating patients online. Our physicians diagnose and treat only when enough data can be ascertained in the video consultation to do so. If not, our physicians triage the patient and refer out for in-person care. That may mean seeing their doctor in-person, going to the emergency room, or ordering tests at a local health center.

What about security issues?

As with brick-and-mortar medicine, it is extremely important to protect patient health information. The information regarding a patient’s health should remain private between the physician and the patient and be stored securely, in compliance with the Health Insurance Portability and Accountability Act (HIPAA). American Well provides a secure space for patients to safely and confidentially consult with a doctor online. This is imperative for an effective and safe telehealth practice.

What does telehealth have to offer me as a doctor?

Telehealth is not only convenient for patients; it offers doctors flexibility at work, reliable pay, and access to new patients. And not only individual and group practices, but even large medical practices and hospitals, are starting to use telehealth to attract and retain patients and to expand their reach.

By incorporating telehealth, hospitals under accountable care organization (ACO) contracts, or otherwise caring for patients under capitation, reap the financial benefits of having healthier patients. Private offices can offer open access and after-hours care or designate that a subset of visits, like medication follow-up, be managed through telehealth. Practices can also bring in other specialties virtually into their office, like certified diabetes educators, dieticians, or behavioral health specialists.

Can I make money with telehealth?

There is high demand from patients for urgent-care-like telehealth services. Today, physicians across the country – including those in our national telehealth practice – make a very good living practicing medicine online, providing care anywhere from 10-40 hours per week.

Another option is for doctors to offer telehealth to their existing patients. In many states, doctors are already being reimbursed for services delivered to their own patients by including GT modifiers in their billing (this modifier is used to indicate telehealth services via interactive audio and video telecommunication systems). Currently 20 states mandate private payer reimbursement for telehealth services and 45 states reimburse for some telehealth services. As our doctors move from fee-for-service to capitated payment models under the Affordable Care Act, they are absorbing the risk (“rewarded for performance,” as some might say). Telehealth is one way to improve efficacy and efficiency of patient care. Telehealth lets doctors increase the number of touch points for patients, which potentially can improve outcomes as well.

Is telehealth the future of healthcare?

Telehealth isn’t really a new form of healthcare; it is the same healthcare that Americans are using every day, delivered in a faster, less expensive, more convenient way. Although not everything can be treated via telehealth, it’s a great option for many types of acute care, chronic care, behavioral health, and wellness services. Patients, doctors, hospital systems, employers, insurers, regulators, and legislators are all rapidly changing the way they view health care in order to incorporate telehealth. In the coming months, the proof that telehealth is here to stay will become even more evident. It’s time to embrace the now of health care.

Have you ever used telehealth? Would you? Share your thoughts and experiences in the comments section.

If you have any questions or to learn more about where and how I practice telehealth, email me at peter.antall@americanwell.com.

Dr. Antall is the Medical Director of Online Care Group, a physician-owned primary care group that offers its clinical services online using American Well’s technology. American Well’s web and mobile telehealth platform connects patients and clinicians for live, clinically meaningful visits through video, supplemented by secure text chat and phone. For more information, visit AmericanWell.com

Categories: Access to Care

Patient of the Month: Charles Fazio’s recovery from heart bypass surgery, kidney failure, and financial crisis

Patient of the Month is a new regular feature from Real World Health Care to illustrate the challenges and successes of the American health care system through the experiences of inspiring survivors.

Charles Fazio wasn’t sure how he could survive another health crisis.

Charles Fazio

Charles Fazio

Just three years after his four-way heart bypass surgery, he developed end stage kidney failure. In the worsening economy, he had lost his job as a traffic signal technician in Norfolk, Virginia and had since become too sick to work. On top of his serious health problems, Charles’ financial worries were overwhelming.

“It was like after having all of these other things happen, now I have to deal with this, too,” said Charles. “It was a big shock.”

Charles’ disability benefits had not begun to come in and he had to sell off his possessions to afford his medical expenses. Eventually, he lost his home and found himself homeless for several days.

“One night I stayed in my mom’s nursing home. I went in to visit her and I pretended like I just fell asleep in the chair next to her,” Charles said.

In short, it had been a rough few years, to say the least.

Charles was treated at Sentara Norfolk General Hospital and received dialysis for a year and a half at the Virginia Commonwealth University (VCU) Medical Center. Completing the process for Medicare allowed him to afford his dialysis treatments and living expenses.

Then, one day in 2012, Charles’ regular doctor appointment morphed into an overnight kidney transplant. “I was scared to death,” Charles said. “I didn’t know what to expect. I had read up on everything thoroughly, but when the time comes, you really just have to face it.”

By 4 o’clock the next day, he had a transplant kidney.

Charles continued treatment and testing at the VCU Medical Center after his operation. His recovery went smoothly, but he still required numerous medications and immunosuppressants. Again, he couldn’t afford the copays.

That’s when doctors and social workers introduced Charles to the HealthWell Foundation, a nationwide non-profit providing financial assistance to insured patients who are still struggling to afford the medications they need (and sponsor of this blog).. Charles was given a grant that enabled him to afford his medications.

“The grant I got from [HealthWell] took a lot of worry off of my back, a lot of tension,” Charles said.

With his financial stress reduced, Charles was better able to emotionally cope with his condition. “The help I got from Norfolk General, the VCU and [HealthWell] was the turning point for all of my frustrations, for feeling sorry for myself,” he said.

Now, Charles is doing quite well. At a recent annual check-up with his doctors at the VCU, his blood tests came back looking good. His transplant kidney is holding up well and his medication is stable. “You never know how you’re doing, even though you’re dieting and doing what your doctors are telling you,” he said. “In the back of your mind you’re asking, ‘How am I doing?’ and only a doctor can tell you.”

“But they said I’m doing well, and I feel good too.”

Charles is optimistic that his series of unfortunate events may now be in the past. He is recovering well and doing his best to stay healthy in his eating habits and his lifestyle. “When the weather’s nice, I try to take a walk once a week, and I hold on,” he said.

One step at a time, Charles. We’re all glad you’re here.

Categories: Access to Care, General