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Category: Patients

Anxiety, Worry or Fear? Disappointment, Grief or Depression?

By HANS DUVEFELT

Especially in these strange and uncertain times, many people feel uneasy. Some of them come to us with concerns over their state of mind.

In primary care, our job is in large part to perform triage. We strive to identify patients who need referral, medication or further evaluation. We also strive, or at last should strive, to reassure those patients whose reactions are normal, considering their circumstances.

A set of emotions we consider normal during the first weeks of the loss of a loved one may constitute pathology of protracted or if there is no apparent trigger.

But what is normal in today’s reality?

People today often have a low tolerance for deviations from the mean. They measure their heart rates, sleep times, steps taken, calories eaten and many other things on their smartphones. They compare their statistics to others’ or to their own from different circumstances.

Is it normal to sleep less when the last thing you do before bed is take in the latest disaster news? Is it normal to have a higher resting heart rate when you are threatened by eviction? Is it normal to feel sadness that life as we knew it doesn’t seem to be within our reach right now?

The worst thing we can do is tell people there is something wrong with them if we see them doing and hear them expressing what many other people also do.

It’s bad enough to feel bad, but even worse if you think your reaction is a sign of psychiatric illness or psychological or constitutional inferiority.

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Does Our Healthcare System Work for the Most Vulnerable Americans?

By DEBORAH AFEZOLLI, CARL-PHILIPPE ROUSSEAU, HELEN FERNANDEZ, ELIZABETH LINDENBERGER

“Why did you choose this field?” Most physicians are asked this question at some point in their early careers. We are geriatrics and palliative medicine physicians, so when that question is posed to us, it is invariably followed by another: “Isn’t your job depressing?”

No, our job is not depressing. We are trained in the care of older adults and those with serious illness, and we find this work very rewarding.  What truly depresses us is how many vulnerable patients died during the pandemic, and how the scourge of COVID-19 revealed the cracks in our health system. Never before in modern times have so many people been affected by serious illness at the same time, nor have so many suffered from the challenges of our dysfunctional health system. Our nation has now witnessed the medical system’s failure to take comprehensive care of its sickest patients.  This is something those in our own field observed long before the pandemic and have been striving to improve.

All of us practicing geriatrics and palliative care have had a loved one who has been challenged by aging, by serious illness, or indeed by the very healthcare system that is supposed to help them. As medical students and residents, we personally confronted these systemic deficiencies and wondered about alternatives for those patients with the most complex needs. We chose fellowships in geriatrics and palliative medicine because we wanted to try and make a difference in the healthcare that is offered to our most vulnerable patients.

During the New York City surge in the spring of 2020, we were front line workers at a major academic medical center. While the global pandemic took us all by surprise, our clinical training and passion for treating vulnerable populations left us feeling capable and ready to serve. Due to the urgent needs of overwhelming numbers of extremely sick patients, our Department was charged with rapidly expanding access to geriatrics and palliative care across our seven hospitals. We were embedded in Emergency Departments (EDs), hospitalist services, and critical care units.  We roamed the hospitals with electronic tablets and held the hands of dying patients, while urgently contacting families to clarify goals of care.  For those who wanted to receive care in the community, we scrambled to set up telehealth visits and coordinate the necessary support. Way too often we could not meet their needs with adequate services, forcing them to visit overwhelmed Emergency Rooms.

While we helped individual patients and eased some of the strain on our hospitals, our system was overwhelmed and mortality numbers continued to steadily rise. Within our hospitals, staff were redeployed to care for the most critically ill in the emergency departments and intensive care units.  In this frantic time, we were fortunate that our hospitals had sufficient medical resources to care for the sickest patients and for the staff.  However, the sub-acute nursing facilities (SNF) and long-term care facilities strained to protect their residents and their employees. Shortages of PPE, staff, space, testing supplies, and funding all contributed to the high mortality numbers we saw in many NYC facilities and across the nation. There were also limited resources allocated to delivering outpatient care in our patients living in the community.  The rapid shift to telehealth was not feasible for many of our older patients, and even when it was possible, the delivery of diagnostic and therapeutic care was limited and suboptimal.

Data now shows that older adults and those with underlying chronic illnesses were disproportionately affected by the COVID-19 pandemic, experiencing higher hospitalization rates as well as higher death rates. Although adults 65 and older account for only 16% of the US population, they represent 80% of COVID-19 deaths. Residents of nursing homes, the frail homebound, and older people of color were the hit the hardest. Thirty-five percent of the deaths in the US from March-May 2020 occurred among nursing home residents and employees. Nationally, over 600,000 nursing home residents were infected with COVID-19 and over 100,000 died from the disease. These data are underestimates and the death toll is likely higher. We cannot explain why older Black Americans were 1.2 times more likely to die than white Americans nor why the odds of dying from COVID were nearly two times higher for persons living in South Dakota as compared to Wyoming or Nebraska. Often, the paid caregivers for these vulnerable patients were themselves vulnerable underpaid women of color who were at higher risk of contracting COVID.

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Health Insurance is a Stumbling Block in Many Patients’ Thinking

By HANS DUVEFELT

I have a patient with no health insurance but a brand new Mercedes. He says he can’t afford health insurance. He cringes at the cost of his medications and our office visit charges. His car cost a lot of money and I know that authorized Mercedes dealers charge around $140/hour for their technicians’ (not mere mechanics) time. A routine service costs several hundred dollars, which he seems more okay with than the cost of his own healthcare visits.

His new Mercedes is under warranty, but his body is not. He is risking financial disaster if he gets seriously ill with no insurance coverage.

I have another patient who needed a muscle relaxer for a short period of time. His insurance wouldn’t cover it without a prior authorization. The cash cost was about $14. We suggested he pay for the medication and told him his condition would have resolved by the time a prior auth might have been granted. He elected to go without.

The brutal truth is that a primary care doctor’s opportunity cost, how much revenue we can potentially generate by seeing patients, is around $400/hour or $7/minute. There is no way I could request a prior authorization in under two minutes. So it would have been more cost effective to pay for his medication than to do the unreimbursed paperwork (or computer work, or phone work) on his behalf. But, of course, we can’t do that.

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The Case to Realign Parkinson’s Disease Research

By STEVEN ZECOLA

If asked, the leaders of the research organizations working on Parkinson’s disease would say that they have made tremendous progress and are optimistic on finding a cure for the disease. 

In truth, this viewpoint understates the magnitude of the challenge and results in insufficient resources being devoted to PD. Given the size of the challenge versus the available resources, most research studies today don’t even include finding a cure for PD as part of their objective.

The time is ripe to get everybody on the same page when it comes to the objectives, resources, and timelines for PD research.

What We Know About Parkinson’s Disease

Parkinson’s disease (PD) is a chronic, progressive movement disorder that affects the lives of almost one million Americans. Roughly 50,000 of the inflicted people die each year, often by injuries from falling.  The incidence of PD is expected to expand to 1.6 million in the U.S. by the year 2037.

The characteristic motor symptoms of PD are tremors, stiffness, slowed movement and impaired balance. Over time, people with PD also experience non-motor symptoms including changes in mood, problems with attention and memory, sleep disturbances, fatigue, and changes in bowel and bladder function.  PD has a considerable impact on the quality of life.

The cost to treat PD has been estimated to be $50 billion a year, split equally between the direct cost of care and the indirect costs of lost opportunities for the patients and caregivers.

PD is a complex disease which is thought to result from an interaction between genetic and environmental risk factors.  More than 20 genes have been identified as having an impact on the onset of PD.  However, genetic variation is estimated to contribute only about 25% to the overall risk of developing PD. Moreover, like the majority of neurodegenerative disorders, little insight is available on how specific sequence variations contribute to disease development and progression.

In short, the exact cause of PD is unknown.  However, we know that that there is more than one manifestation of the disease. We can also reasonably conclude that more than one single element or therapy will be required to cure the disease.

What We Know About Parkinson’s Disease Research

PD was first discovered and described by James Parkinson in 1817 in London, England.

In 1911, the efforts of Kazimierz Funk, a Polish biochemist, paid off with the identification of Levodopa as a potential treatment.

By 1970, the FDA approved the use of Levodopa combined with Carbidopa for the treatment of PD. Since then, this combination has remained the gold standard for treatment.

During the last 50 years, many attempts have been made to improve this treatment and avoid its long-term complications.  While several enhancements have been approved by the FDA and have helped patients, no treatment has cured or slowed the progression of the disease.

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Why I Seldom Recommend Vitamins or Supplements

By HANS DUVEFELT

People here in northern Maine, as in my native Sweden, don’t get a whole lot of natural sunlight a good part of the year. As a kid, I had to swallow a daily spoonful of cod liver oil to get the extra vitamin D my mother and many others believed we all needed. Some years later, that fell out of fashion as it turned out that too much vitamin A, also found in that particular dubious marine delicacy, could be harmful.

This is how it goes in medicine: Things that sound like a good idea often turn out to be not so good, or even downright bad for you.

Other vitamins, like B12, can also cause harm: Excess vitamin B12 can cause nerve damage, just as deficiency can.

Both B12 and D can be measured with simple blood tests, but the insurance industry doesn’t pay for screening. That is because it hasn’t been proven that testing asymptomatic people brings any benefit. In the case of B12, it is well established that deficiency can cause anemia and neuropathy, for example. But here is no clear evidence what the consequences are of vitamin D “deficiency”. A statistically abnormal result is not yet known to definitely cause a disease or clinical risk, in spite of all the research so far, but we’re staying tuned.

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Doctor-Patient Relationships: I Don’t Babysit – I Want to Empower

By HANS DUVEFELT

I have known doctors that cultivated a dependence among their patients by suggesting their health and safety depended on regularly scheduled visits and laboratory testing for what seemed to me stable, chronic conditions. People would come in every three months, year after year, to review cholesterol numbers, potassium levels and glucose or blood pressure logs and have a more or less complete physical exam every time. Patients would also get scheduled for rechecks of ear infections and other simple conditions I always thought patients can assess themselves.

Compare the effort on the part of the physician with that type of practice versus seeing stable patients less often, doing more urgent care, and being more available for new patients. The first approach seems comfortable, possibly complacent, and the second more demanding, but also more satisfying, at least to me. My goal is always to make my patients as independent and self sufficient as they can be. I don’t want them to be dependent on me in an unhealthy way.

It is a matter of temperament, but it is also a matter of stewardship and resource management if we see ourselves as serving the populations and communities around us.

Maybe it is because of my Swedish upbringing and education, but I would feel guilty if sick patients or even relatively healthy people don’t even have access to a personal physician if I were to spend my days over-monitoring stable conditions.

In this medically underserved state, don’t we have a responsibility to consider whether we are getting too comfortable in our chronic care routines? Patients check their own blood pressures and glucose levels. They could get in touch if their numbers worsen. Do we really need to bring them in to make sure they don’t stray when there are people in our communities without access to care?

I sometimes actually use the phrase “I don’t babysit”. I don’t necessarily use the word “empower”, but that is what I always try to do with my patients.

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Off Our Chests: No Secrets Left Behind

By CHADI NABHAN

She was a successful corporate lawyer turned professional volunteer and a housewife.

He was a charismatic, successful, and world-renowned researcher in gastrointestinal oncology. He was jealous of all breast cancer research funding and had declared that disease his nemesis.

They were married; life was becoming a routine, and borderline predictable. Both appeared to have lost some appreciation of each other and their sacrifices.

Then, she saw a lump, and was diagnosed with breast cancer. Not any breast cancer, but triple negative breast cancer. The kind that is aggressive and potentially lethal. The year was 2006, and their lives was about to change forever.

This is the story of Liza and John Marshall, who decided after 15 years of Liza’s diagnosis to disclose all, get all their secrets out in the open, and “off their chests”. They did so by writing a book that I read cover to cover and could not put down.

The authors decided to not only share their cancer journey as a patient and a caregiver, but also to share much of their personal and intimate details. They wanted us to know who they are as people, beyond patient and oncologist husband. We got to know how they met, when they met, and how they fell in love from the first sight. We got to know some corky personal details, and as a reader, I felt that I was part of their household. John shares how losing his mother at a young age to lymphoma affected him personally and professionally. We learn that they attend church every Sunday. Both are people of faith and they let us know how their faith helped them during these challenging times. Losing a dear friend to breast cancer took a toll and certainly made them less certain whether Liza’s fate would be any different.

They alternate writing chapters so that we get to know various events and stories from their sometimes-opposing points of view. We get to understand how a cancer diagnosis affects a caregiver, who happens to be a busy academic oncologist with little time to spare in between clinical practice and traveling for his work. At some point, John expresses resentment that all of the attention was being diverted towards his wife -the patient- and that he was left alone with few people caring how he felt and what struggles he was going through.

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“Tell Me More”

By HANS DUVEFELT

Words can be misleading. Medical terms work really well when shared between clinicians. But we can’t assume our patients speak the same language we do. If we “run with” whatever key words we pick up from our patient’s chief complaint, we can easily get lost chasing the wrong target.

Where I work, along the Canadian border, “Valley French” expressions tripped me up when I first arrived. The flu, or in French le flu (if that is how you spell it – I’ve never seen it in writing) is the word people use for diarrhea. Mal au cœur (heart pain) doesn’t mean angina or chest pain, but heartburn, a confusing expression in English, too.

But even if we are all English speaking, clinicians need to be careful not to assume common words mean the same to everyone.

I have seen many patients complain of anxiety, but not actually be worried about anything. A number of bipolar people have used the word anxiety when, in my personal vernacular, they are really describing pathological restlessness. I once had a patient complain of “nerves” but not have a worry in the world except for his hereditary essential tremor, which he assumed was a sign of untreated anxiety.

People often resist my labeling their symptom as chest pain, insisting that I am wrong about the location and the character of their discomfort. Instead, they might insist it is indigestion or prefer pressure, tightness or heaviness in their throat, epigastrium or even between their shoulder blades. “Chest pain is shorthand for all that”, I tell them.

I hear people use the word dizzy for a gnawing feeling in their epigastrium, and nauseous for a sense of early satiety after eating.

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The Pain Is In Your Brain: Your Knees Know Next to Nothing

By HANS DUVEFELT

A “frozen shoulder” can be manipulated to move freely again under general anesthesia. The medications we use to put patients to sleep for such procedures work on the brain and don’t concentrate in the shoulder joints at all.

An ingrown toenail can be removed or an arthritic knee can be replaced by injecting a local anesthetic – at the base of the toe or into the spine – interrupting the connection between the body and the brain.

An arthritic knuckle can stop hurting and move more freely after a steroid injection that dramatically reduces inflammation, giving lasting relief long after any local anesthetic used for the injection has worn off.

The experience of pain involves a stimulus, nerve signaling and conscious interpretation.

Our brains not only register the neurological messages from our sore knees, shoulders, snake bites or whatever ails us. We also interpret the context or significance of these pain signals. Giving birth to a long awaited first baby has a very different emotional significance from passing a kidney stone, for example.

I have written before about how we introduce the topic of pain to our chronic pain patients in Bucksport. Professor Lorimer Moseley speaks entertainingly of he role of interpretation in acute pain and also explains the biochemical mechanisms behind chronic pain.

TREATING PAIN WITH ANALGESICS

Even when we are awake, we can reduce orthopedic pains with medications that work on the brain and not really in our joints. A common type of arthritis, such as that of the knees, is often treated with acetaminophen (paracetamol), nonsteroidal anti-inflammatory drugs (NSAIDS) like ibuprofen or even opioids.

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Pledge to the Participatory Medicine Manifesto!

By THE SOCIETY FOR PARTICIPATORY MEDICINE

We are excited to announce that the campaign to pledge to the Participatory Medicine Manifesto is launching today — and we need your support!

Our Participatory Medicine Manifesto is a call to action for patients, caregivers and health care professionals to equally share decision-making and respect one another. 

We want you and your organization to help us fix a broken healthcare system from the ground up. We want to put democracy back into the culture of healthcare by enabling patients, healthcare professionals and caregivers to all have an equal voice. We need your influence to inspire people. We will list individuals and organizations that support the Manifesto.

Please view and sign the SPM Manifesto Pledge today 

We have designed a promotional campaign encouraging people to pledge to the Participatory Medicine Manifesto. As part of this campaign, we created a pledge form and social media toolkit for people and organizations to use in spreading the work about Participatory Medicine.

And spread the word to your colleagues and friends to help us reach our goal. After you pledge you will find the easy to use social media toolkit.

We greatly appreciate your help and support!

Eric Bersh, Judy Danielson, Kevin Freiert, Matthew Holt, Dr. Danny Sands, Amber Soucyall board members of SPM

Pledge Today! 

PS – Please share with your friends & followers!

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