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Archive for the ‘Empathy’ Category


Poverty and the American Dream

Larry H. Bernstein, MD, FCAP, Curator

LPBI

 

 

Brookings Institute: Poverty Report

http://www.brookings.edu/~/media/Research/Files/Reports/2015/12/aei-brookings-poverty-report/Chapter-1.pdf

Chapter 1:

Introduction

In 1931, the writer James Truslow Adams coined the term “The American Dream.” His definition holds up well today. The dream, he said, is of a land in which: life should be better and richer and fuller for everyone, with opportunity for each according to ability or achievement. It is a difficult dream for the European upper classes to interpret adequately, and too many of us ourselves have grown weary and mistrustful of it. It is not a dream of motor cars and high wages merely, but a dream of social order in which each man and each woman shall be able to attain to the fullest stature of which they are … capable, and be recognized by others for what they are, regardless of the fortuitous circumstances of birth or position.1

Today, many Americans fear that our country is no longer a land of opportunity. Although social mobility overall seems not to have decreased in recent decades,2 there is evidence that it is lower in America than in many other advanced economies.3 Scholars on both the left and the right are also increasingly worried that children growing up today in lower-income families have fewer social supports and pathways into the middle class than in past generations. As Robert Putnam showed in his recent book Our Kids, 4 children from wellto-do families today enjoy more material, emotional, and educational support than ever before, but children from low-income families often grow up in homes, schools, and communities that are in disarray. Charles Murray reached similar conclusions in Coming Apart. 5

The trends aren’t entirely bleak, and poor children today are better off in several ways than they were a few decades ago. They have better access to healthcare, fewer of them are born to teen mothers, their parents have more education, they are exposed to fewer environmental toxins and violence, and fewer live in foster care. We should celebrate these advances. But the circumstances and outcomes of upper-income children have improved even more rapidly, leading to ever-widening inequality in the human and financial resources that boost child development. And on a few important factors, such as family stability, the circumstances of poor children have gotten worse.

The reasons for the increasing gaps between childhoods in different social classes are many and intertwined, including: the loss of manufacturing jobs, stagnating wages for workers without a college degree, labor-saving technological changes, changing relationships between workers and management, the increasing importance of education and training in a post-industrial economy, a less energetic civil society, high rates of incarceration, weaker attachment to the labor force among less-educated men, and the rising prevalence of single-parent families among the less-educated.

The poor prospects for children born into poor families are an urgent national concern. This state of affairs contradicts our country’s founding ideals. It weakens the promise that inspired so many immigrants to uproot themselves from everything familiar to seek freedom, self-determination, and better lives for their children in America. It holds particularly grave implications for the well being of blacks and for the future of racial equality so courageously fought for over the course of generations.

At its best, the American credo of freedom and individual initiative has been uniquely able to unleash the energy and imagination of its citizens, inspiring them, as Adams put it, “to attain to the fullest stature of which they are capable.”6 For many American families—including many low-income families—that dream is still possible. But large numbers of children live in disadvantaged and often chaotic homes and communities, attend schools that don’t prepare them to navigate an increasingly complex economy, and have parents (often a single parent) who work in low-wage jobs with variable and uncertain hours. The massive waste and loss of this human potential costs the United States in economic terms, and it is a tragedy in human terms. Most Americans would agree that we can do better.

The political difficulty arises when we turn to solutions. Most new ideas for helping the poor are controversial and expensive, and when one political party offers a proposal, the other party usually disagrees with its premises or specifics. The parties often have deep philosophical differences, but research also shows that the mere fact that one party proposes an idea can motivate partisans on the other side to dismiss it.7 And yet, points of agreement are emerging that could serve as a foundation for consensus. Most Americans and their political representatives tend to agree on several key points.

  1. First, for able-bodied Americans, it is far better to earn money than to depend on public assistance, although economic conditions sometimes prevent people from becoming self-sufficient.
  2. Second, children are on average better off growing up with two parents committed to each other for the long term, an arrangement most likely to occur within the context of marriage.
  3. And third, our schools don’t adequately prepare the young for the economic and social environment in which they must make their way.

THE AEI-BROOKINGS WORKING GROUP

Our report has three distinctive features.

  1. the diversity of our perspectives and experiences.    We share an intense belief that poverty and opportunity are profoundly consequential and that our nation’s future prosperity and our common humanity compel us to work together to find credible strategies to reduce poverty and increase economic mobility.
  2. we consider three major domains of life simultaneously: family, work, and education.    they are highly interconnected. Improving family stability helps children succeed in school; improving the fit between schools and jobs helps teenagers transition into the labor force; when young people can find work that pays well, they create more stable families, and the cycle continues.
  3. it is grounded in values—the three broadly shared American values of opportunity, responsibility, and security. Focusing on these shared values has made it easier for us to work together and find many points of agreement.

OPPORTUNITY The concept of “opportunity” draws nearly universal support among Americans, and it’s the core concept of the American Dream. We endorse Truslow Adams’ definition of opportunity as the state of affairs when “each man and each woman shall be able to attain to the fullest stature of which they are capable,” regardless of the circumstances of their birth.8

RESPONSIBILITY America is a free society, but freedom comes with responsibilities. Responsibility is the state of being accountable for things over which one has control, or has a duty of care. Family life is a network of mutual responsibilities. So is work life. So is democratic citizenship.

The values of responsibility and opportunity are closely linked in the American mind. We can see the link in a line from President Clinton’s 1993 Labor Day speech that has had bipartisan resonance: We’ll think of the faith of our parents that was instilled in us here in America, the idea that if you work hard and play by the rules, you’ll be rewarded with a good life for yourself and a better chance for your children.10 The converse of this assertion is that if you fail to be responsible—if you don’t work hard or don’t play by the rules, then you aren’t entitled to a reward. These linked values of responsibility and opportunity were the linchpins of the bipartisan welfare reform law of 1996—whose official name included both “Personal Responsibility” and “Opportunity.”11

SECURITY Despite our best efforts to care for ourselves, we all know that life sometimes resembles a lottery.   The central idea of insurance is that we are all better off pooling some of the risks of life, and hoping that we never get to recover our insurance premiums.

Friedrich Hayek, an economist who was wary of collectivism in most forms and who is widely admired by conservatives, endorsed the value of security in 1944 in this famous passage from The Road to Serfdom: There is no reason why, in a society which has reached the general level of wealth ours has . . . should not be guaranteed to all . . . some minimum of food, shelter and clothing, sufficient to preserve health. Nor is there any reason why the state should not help to organize a comprehensive system of social insurance in providing for those common hazards of life against which few can make adequate provision.12

Several decades of research show that increasing security for children can better prepare them to break the cycle of poverty and grow up to be more responsible adults. A child’s brain is highly malleable. In the early years, when it is growing rapidly, the young brain responds to cues about the kind of environment that surrounds it. When children are raised in a chaotic and unpredictable environment, they become more attracted to immediate rewards, rather than larger but more distant rewards.13   Although children have great resilience and the capacity to overcome their early environment, some children—especially if they don’t have the benefit of interventions that reduce the stress to which they are exposed—are overwhelmed by early stress and trauma and suffer permanent damage.16

Conversely, when children are raised in more stable and predictable environments, they are more likely to learn that it pays to defer gratification and reap larger rewards in the future. Low stress, high predictability, and strong, stable relationships with caring adults all help children become measurably better at self-regulating, delaying gratification, and controlling their impulses.17 If we want adult citizens who can exercise responsibility, we should do as much as we can to improve the security of childhood, especially among the poor.

These three values guide the rest of our report. We offer a comprehensive plan for reducing poverty and promoting economic opportunity in the United States. In each chapter, we evaluate the best evidence about current approaches and then recommend policies that will increase opportunity, encourage people to take greater responsibility for their own lives, and increase security, especially among lower-income Americans and their children.

In the final chapter, we summarize our recommendations and suggest how the nation can pay for the policies we propose. We also lay out a path by which our recommendations might be carried out, evaluated, and improved, despite America’s political polarization. We have negotiated and compromised to create a plan that we believe is the best way forward. We are all enthusiastic about the final product because we believe it will reduce poverty and increase opportunity in America.

 

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Socioeconomic factors involved in chronic illness

Larry H. Bernstein, MD, FCAP, Curator

LPBI

 

I have discussed a number of features of the health care system that are available to individuals and are becoming integrated over the last decade to a much greater extent than at the end of the last century.
Part of this has come because of an emergent view of health care markets and the patient base as a customer patient base.  Related to this view is the emergence over a quarter of a century of greater consolidation of heath care providers.  The first significant attempt to rationalize healthcare payments was with the development of diagnostic related groups by studies and proposals at Yale University School of Management under Robert Fetter. The first implementation was in New Jersey, prematurely supported by the Healthcare Financing Administration. As healthcare financing is usually predicated on HCFA, the insurance agencies, which includes negotiated for-profit entities follow suit.  However, it takes a large patient base to support any insurance provider, and with the not-for profit providers negotiating with large for-profit organizations, there is a tension and a balance that has to come with such a plan.  The existing system doesn’t support a fully nationalized system as exists elsewhere, and a two tiered system is almost inevitable.  In addition, our society, built by two centuries of immigration, and having a model system from the Kaiser Project in building the San Francisco bridge, that also influence IBM, employment-based insurance had a good start.  Government provision had to wait, with real success in the mid-twentieth century.

I have pointed out that the healthcare system has been in a remodeling process for the last quarter of a century aligned very much with business interests and the workforce. Even retirement insurance has been a worker innovation.  However, what is the underlying situation that arises from this arrangement.
The power of labor-unions has been eroded, which erodes an element of leverage.

At the beginning of the industrial revolution in England there was a seminal study that showed that the workers developed stress related illness that was not seen at the management level. In the US we have had streams of immigration and seemingly boundless innovation that has contributed to an impressive economic image of a country.  However, the story is also bimodal.  There is a strong cultural factor and family structure factor in both upward mobility and in resilience of the individual under stress.  This has been evident from observing the emergence of a former slavery descendent negro population and suppression of this people for a half century after the civil war, and more recently from migrations from Mexico, South America, and Cuba.  We have had a selective migration of educated people from India and Asia, being that they were of a more mobile class of achievers.  America, the home of the brave has been limited in representation.

What are the effects of this class disequilibrium?  As the country has growth and as companies have moved offshore for cheap labor, the power of labor declined, and the benefits of labor have been pushed down.  This resulted in a decline of the middle class, and levels of poverty and over the poverty line pushing families into considerable tension.  This is characterized by high divorce rates, and there are single mothers working two shifts, or both parents trying to balance the time available.

The problem here is like a compound fractured society.  The clustered neighborhoods are not just black, as a generation moved out and up, and property values dropped in once desirable neighborhoods.  The existence of a close community of common culture is workable as it is held together by common lineage. However, the fissures occur where the parents have no time for family, and the parents have no time to play with or read to their children.  This problem can be carried over from one generation to the next by failure in child development to gain basic living and society skills.  What we don’t happen to recognize is that as this multiplies, compounded by the highest level of incarceration in the Western world, there is uncontrolled violence, hatred, suicide, anger, and shortened lifespan.  This has a huge cost, and the cost weighs on the individuals affected and the communities they live in.  The cost includes the health burden.  Moreover, even though we have a large service sector with sports and exercise therapy, it may not be included in healthcare benefits, but is provided as add on to unreimbursed costs.

 

 

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An ambiguous course of psychosis

Larry H. Bernstein, MD, FCAP, Curator

LPBI

 

It is not always clear what the diagnosis is when a young person develops a psychosis, which is usually a clear break, but the features are not typical.  In the New York Times Opinion Page of Nov 17, 2015, Norman Ornstein describes the development of such in his son – How to help save the mentally ill from themselves.  He describes legislation in process to deal with the problem of when you institutionalize a potentially suicidal patient.  This was the situation that I described in the murder of Rabbi Adler on the podium by Richard Wishnetsky so many years ago.  In the case of Ornstein, his oldest son Mathhew died at 34 of carbon monoxide poisoning 10 years after his problem was discovered.

The son was a brilliant student, and he excelled in debating.  He was compassionate and empathetic.  This young man was a standup comedian and after graduating from Princeton wh went to Hollywood. The father describes his son’s condition as anosognosia, meaning lack of recognition of his illness.  I recall that a prominent cancer surgeon who was manic depressive psychotic and required lithium might have behaved that way when he failed to take his medication. He had a tragic surgical failure that ended his career when he was doing a rectal dissection and got into the posterior vascular bed and was in trouble, needing the assistance of the Chief of Urology.  The patient who died received over 100 units of blood. This very intelligent surgeon would throw the specimen he removed to the pathologist who entered the operating room in poor judgement.  I also recall a valued colleague of mine, a mathematical genius with MD and PhD tell me how the great surgeon and father of kidney transplantation could work tirelessly, but he died in a plane crash – himself as the pilot. I’m not in a position to disagree with Norman Ornstein’s conclusion that the son had a serious mood disorder, but the presentation he describes is similar to the two cases I mention.  In addition, I did not mention that my dear colleague was himself manic depressive, and he would work tirelessly, except when he was down and out.  He wrote an incredible program to diagnose heart attach from the serum enzymes for the IBM PC-XT in apl.  He sailed through difficult mathematics classes without taking notes.  He bacame interested in Shannon Information Theory when he heard a lecture by a microbiologist colleague who had done seminal work in classifying organisms by their biochemical features, which led to extending the use of feature extraction and combinatorial classes.

Ornstein points out that his son was over age 18, so that neither the family or professionals had any legal authority to make a decision about his hospitalization or related matters.  This is not quite like what I had seen with my brother.  But in my brother’s case, he was completely fractured, but he also was in no way belligerent.  In the case of Mathew Ornstein, he was never belligerent, but he was unkempt, kept himself poorly, and grew a beard.  He also becaame ultra religious.  The religiosity was also a feature of my own brother’s illness.  Matthew took a position that he could not take medication.  What is not clear is what medication he would have been on, which might be informative.

see more at – http://www.nytimes.com/2015/11/17/opinion/how-to-help-save-the-mentally-ill-from-themselves

 

 

 

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Is Patient Engagement with Medicine different than World View?

Curator: Larry H. Bernstein, MD, FCAP

 

In Mark Twain’s later years he had personal and financial losses.  I think that was when he wrote “why do we laugh at a birth and cry at a funeral? It is because it is not I!”

The first Chairman of Medicine at John Hopkins Medical School was William Osler.  He taught that a physician must be broadly knowledgeable about the arts and culture in order to make a difference in engaging the patient.  This has come into play in the republican primaries for the first time, regardless of other requirements.

When I was a freshman medical student we had a special course on Inborn Errors of Metabolism.  I think it was a first, given a new and energetic Chairman of Biochemistry from Harvard.  Nevertheless, over the next decade, the influence of “Oslerism” was fading, to be replaced by the concept of a British physician, Archibald Garrod (1857–1936), in the early 20th century (1908). He is known for work that prefigured the “one gene-one enzyme” hypothesis, based on his studies on the nature and inheritance of alkaptonuria. His seminal text, Inborn Errors of Metabolism was published in 1923.[1] Some years later I learned that the selection of students entering was weighted in success with organic chemistry.

 

Type of inborn error Incidence
Disease involving amino acids (e.g. PKU), organic acids,
primary lactic acidosis, galactosemia, or a urea cycle disease
24 per 100 000 births[3] 1 in 4,200[3]
Lysosomal storage disease 8 per 100 000 births[3] 1 in 12,500[3]
Peroxisomal disorder ~3 to 4 per 100 000 of births[3] ~1 in 30,000[3]
Respiratory chain-based mitochondrial disease ~3 per 100 000 births[3] 1 in 33,000[3]
Glycogen storage disease 2.3 per 100 000 births[3] 1 in 43,000[3]

 

  1.  http://www.esp.org/books/garrod/inborn-errors/facsimile/
  2. Jump up^ Vernon, Hilary (Jun 2015). “Inborn Errors of Metabolism: Advances in Diagnosis and Therapy”. JAMA Pediatrics.
  3. Jump up to:a b c d e f g h i j k l Applegarth DA, Toone JR, Lowry RB (January 2000). “Incidence of inborn errors of metabolism in British Columbia, 1969-1996”. Pediatrics 105 (1): e10. doi:10.1542/peds.105.1.e10PMID 10617747.

When I entered my third year of medical school, I had a huge awakening. I was now engaged with patients at Detroit Receiving Hospital.  It was not unlike Cook County, LA County, Charity Hospital, King County or Belleview Hospital.  This was a year before the Detroit riots.  Receiving Hospital (later Detroit General) had a large population of indigent patients and was a trauma center located adjacent to skid row.  There were students who looked down on the patients, many on welfare, and who took a taxi to the hospital.
Most of my colleagues did not have that view.  However, I would guess that my view was transcended some time later when I recall students concerned about “racial balancing” for entry to colleges.

I saw the victims of gun, knife and other violence in the Emergency Room (ER).  On one occasion, the entire surgery staff was called out of the weekly Grand Rounds to attend to 3 cases with massive bleeding in the ER. One of the cases was presented the following week with a discussion of whether the patient should have been taken to the operating room instead of handling the emergent case in the ER.

I also recall a woman who might have been 45 years old who was extremely anxious and had had 5 divorces. Nobody came to visit her.  We were taking her blood pressure when it spiked very high.  My classmate might well have said holy smoke and ran to the library to check things out.  She had a very rare occurrence of pheochromocytoma, a tumor of the adrenal medulla that secretes adrenaline.  It was probably also a factor in her social history.  It was the first such case to be seen by the Chairman of Surgery.

I don’t know that preparation in the great city hospitals has changed.  It is an important experience.  I did see some anger expressed by patients in the ER, mainly related to the life experiences of the patient.  In my 20 years at Bridgeport Hospital, there was a large admission population from “Father Panic Village”.  I recall vividly a patient saying to me, when he learned my last name is Bernstein, get away from me.

Over the years, not that much has changed.  There is a much larger uneducated, unemployed, and ignorant population that has no hope of a future.  It is most disconcerting at this time because they are bereft of a dream, and they don’t participate in our society.  Moreover, large disparities influence voting patterns and also the use of tight public resources.

It would be difficult for me to consider this to be unrelated to an emerging world crisis that we are observing today.  There is an increased downward pressure on the lower class with a vanished middle class.  The entering well prepared medical staff is inundated, but more skilled at the inadequate medical information systems they have to use.  There has been emigration to the UD for decades, but now we have more openly advocated do not come unless you have value to provide.  We are in the midst of a Middle East crisis, and despite economic recovery since the Wall Street collapse, there is a “doomsday” chronicle.  Emma Lazarus wrote “Give me your poor, … and your huddled masses yearning to be free”.

TS Elliott wrote “The Hollow Men” in 1925, post WWI . We remember “This is the way the world ends. This is the way the world ends. Not with a bang, but a whimper.  I hope that it hasn’t come to that.

 

 

 

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Robin Williams death

Larry H. Bernstein, MD, FCAP, Curator

LPBI

 

Lewy body: The ‘monster’ dementia blamed for Robin Williams’s death

Schneider says depression didn’t cause Williams’s death: “Lewy body dementia killed Robin. That’s what took his life.”

Strikingly, LBD – sometimes referred to as dementia with Lewy bodies or Parkinson’s with Lewy bodies, depending on symptoms – is the second-most common dementia after Alzheimer’s and affects more than 127,000 Britons. Yet most people have never heard of it.

Robin Williams who suffered from Lewy Body Dementia.

James Galvin, a neurology and psychiatry professor at Florida Atlantic University, says: “It’s the most common disease you’ve never heard of.”

“This disease is a sea monster with 50 tentacles of symptoms that show when they want,” Schneider said.

Williams suffered hallucinations, anxiety, depression, loss of motor control and problem-solving skills, sleep, balance and spatial awareness problems, and delusions.

Schneider describes one incident just weeks before Williams’s death, when she was in the shower and he was standing by the sink.

“Something didn’t seem right,” she recalls, so Schneider got out of the shower to find her husband’s head covered in blood. “He pointed to the door and I said, ‘Did you hit your head?’ and he nodded.” The incident confused her at the time. “But now, finding out all about Lewy body disease, lo and behold, their vision is affected, as is the ability to recognise and identify objects,” she says. “Now I get it.”

 

Lewy bodies are protein deposits in the brain, explains Professor David Burn, consultant neurologist and director of the biomedical research unit in LBD at the UK National Institute of Health Research (NIHR).

Discovered by Dr Frederic Lewy, a colleague of Dr Alzheimer’s, in 1912, the deposits develop inside nerve cells (neurons) in the brain, interrupting messaging and causing neurons to die. A patient’s symptoms will depend on which part of the brain is affected.

“When neurons die in the cortex, it causes dementia, but when it occurs in the brainstem, it causes motor symptoms (Parkinsonism),” says Burn.

“LBD patients face a rapid deterioration in their cognitive, physical and psychiatric function, and it tends to progress faster than other dementias,” he says.

When Paul Moynagh’s wife, Imogen, couldn’t find her way from a cafe table to the counter on a visit to a National Trust house in Devon in 2006, he thought little of it.Paul, 78, couldn’t have predicted the confusing set of symptoms that Imogen, 74, would experience. LBD is often misdiagnosed as Parkinson’s or Alzheimer’s, and it took doctors almost seven years to confirm her illness.

“Looking back, it began with little signs – loss of spatial awareness is an early symptom –  but they were so inconsistent,” recalls Paul, a retired surgeon.

First, there was a minor trembling in Imogen’s hands, then severe sleepiness during the day, along with spasms that made her right foot turn in when she walked. Then she developed depression and suffered panic attacks.

“Imogen has a pragmatic personality,” says Paul. “She used to play sports, was a keen gardener, walked everywhere and looked after our two children, Mark and Rachel. Ten years ago, if you had told her she would be afraid of being left alone, she would have laughed.”

By 2010, Imogen’s reasoning and planning skills were suffering – a key sign of LBD.

A keen bridge player, Imogen recalls: “I stopped winning, so I knew something was wrong.” (Though her speech is now slow, her sense of humour remains.)

 

Like Schneider, Paul Moynagh was also baffled by his wife’s repeated falls in the years preceding her diagnosis. “She’d had nine different broken bones, breaking her wrist twice, her ankle, and once, when she’d fallen down some stairs, her elbow.”

Imogen, like Williams and many LBD sufferers, was initially diagnosed with Parkinson’s disease.

 “She began shuffling when she walked and her voice became weak, both symptoms of Parkinson’s,” says Paul. Meanwhile, her depression was getting worse, not least because Imogen was so aware of what was happening to her.

“It’s different from Alzheimer’s in that people know exactly what’s happening, and one day can be completely lucid and the next be experiencing terrible anxiety and delusions. The more Imogen is aware of her situation, the more she gets depressed.”

When Paul Moynagh’s wife began experiencing hallucinations – a tell-tale sign of LBD – he knew that there was more to her illness than Parkinson’s. “She would see people in the windows of the conservatory and in our floor – which we made look like natural stone – she saw figures speaking to her.

“In my desperation, I would spend hours Googling Imogen’s symptoms until I stumbled on Lewy body dementia,” he says.

Brown says Robert had paranoia and hallucinations – he was frightened by faces he would see in the windows of a summer house he had built at the bottom of the garden. “One evening we were watching the Baftas on television and the camera panned, settling on various stars, and Bob turned to me and said: ‘I think Judi saw us.’ He meant Dame Judi Dench. He thought we were there and became very distressed because he wasn’t correctly dressed.”

“I’m a doctor and I had never even heard of it, and the neurologist was reluctant to accept it, but Imogen ticked all the boxes.” By 2013, a locum psychiatrist finally diagnosed Imogen with LBD. “I went along with my Google list, and she finally made the diagnosis. Two months later, the neurologist finally agreed.”

 

June Brown, who plays Dot Cotton in EastEnders, lost her husband, actor Robert Arnold, to LBD in 2003.

In a moving video made for the charity Lewy Body Society, Brown recalls: “Bob knew what was happening to him and he hated it. He once said: ‘I never thought I would go like this.'”

Unlike Alzheimer’s sufferers, LBD patients often have lucid memories. “Bob never lost his memory for people’s names. It’s the most strange disease because he would have moments of confusion and moments of clarity. It’s worse than Alzheimer’s because of this awareness of what you’re going through.”

 

Now, the only way to know that someone had Lewy body dementia is when a post-mortem examination finds Lewy bodies in the brain.

According to LBD specialist Ian McKeith, professor of old age psychiatry at the Newcastle University Institute for Ageing, LBD often gets misdiagnosed because doctors don’t know which questions to ask. He is in the middle of a study funded by the NIHR to develop a diagnostic toolkit for use in NHS practices.

Although there is no cure for LBD, doctors can treat symptoms using drugs that work on the brain’s messaging system, says McKeith. But correct diagnosis is essential. “If antipsychotic or anti-Parkinson’s drugs are given to patients with LBD, they can be fatal,” he says.

“We were living a nightmare,” Susan Schneider said of Robin Williams’s final months.

McKeith says one study found that when carers looking after someone with LBD were asked to rate their quality of life on a scale of zero to one (where zero was as bad as it could be), one in four rated it as below zero.

Still, Paul Moynagh refuses to refer to life with Imogen as a nightmare. She now needs 24-hour attention and help feeding. They recently celebrated their 50th wedding anniversary. During our interview, she turns to her husband and says slowly, with the difficulty she now has in getting words out: “Without your care, I don’t know where I would be.”

“Underneath it all, she is still the lovely person that I married,” he says.

“We still love each other as much as we did before – that hasn’t changed. If anything, I love her more.”

 

 

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Compassionate Care

Larry H. Bernstein, MD, FCAP, Curator

LPBI

 

What Price Compassion?

http://www.cancernetwork.com/blog/what-price-compassion

 

“When a person realizes he has been deeply heard, his eyes moisten. I think in some real sense he is weeping for joy. It is as though he were saying, ‘Thank God, somebody heard me. Someone knows what it’s like to be me.’”

“If I let myself really understand another person, I might be changed by that understanding. And we all fear change. So as I say, it is not an easy thing to permit oneself to understand an individual.”

— Carl Rogers, American Psychologist (1902–1987)

Oncologists, whether they like it or not, must develop some psychological skills if they ever hope to master the art of caring for people living with cancer. Among our many duties we serve as therapists to those diagnosed with, living with, and dying with cancer. Therefore, it behooves us to recognize the benefits of communicating our regard for our patients’ lives and our concern for their anxieties. Compassion, defined as sympathy for another’s woes and a desire to ease them, is succor for fear. Compassion creates a bond of trust between doctors and patients that soothes painful emotions and provides support during difficult times. Given the oncologist’s busy schedule, is compassion a superficial gratuity or does it require training and execution in order to be meaningful? How do we, who have no formal training as therapists, learn to value it for our patients and use it successfully?

The eminent psychologist Carl Rogers, known as the father of client-centered therapy and the author of the two quotations above, would be a welcome addition to the oncology staff. His philosophy of therapy emphasized letting the client (his term for patients) direct the course of discussion as a means toward deeper understanding, and he emphasized the need for the therapist to follow certain guidelines. I believe his method fits perfectly with our need to learn the skill of compassion. Let’s look at the three qualities Rogers requires the therapist to possess and how they can be used in the oncology clinic.

1. Congruence, also known as Genuineness. This is the ability to be real, to be transparent, with no façade of self-importance or didactic formality that could build a wall between the patients and us. In order to express compassion to the needy, we must project an honest image of ourselves; we must drop the mask hiding our true feelings. For example, if I’m having a bad day, I should admit it rather than act frustrated for no reason. If something funny comes to me, I will share it. I want to let my patients see me for who I truly am—a fellow human being, with no appetite for phoniness.

2. Unconditional Positive Regard. Just as it is named, this means accepting patients for who they are and eliminating any prejudices or disparaging feelings that threaten to surface. We all have personality quirks, shortcomings in communication skills, imbalances, and hidden agendas. We must not let anyone’s flaws or foibles poison our professional relationship. No matter how unpleasant, annoying, nervous, or angry our patients are, we shall respect them as unique individuals and not let them influence us in a negative, unhelpful way. Inside all of us is a yearning for respect and love. Thus, compassion is meant to be shown to all—no favoritism.

3. Empathy. Dr. Rogers believed that the therapist must be able to accurately interpret the inner emotions and struggles of the client “as if one were the person, but without ever losing the ‘as if’ condition.” Oncologists who are able to see a situation through the eyes of their patients will succeed in their mission. We must be able to “enter another’s world without prejudice,” and the best way to do this is by being perfectly comfortable in our own skin to the point that we can block our inner reactions and focus entirely on what it must be like to be the patient. Empathy will never fail to bring forth compassion.

In my opinion, compassion in the oncology clinic is 90% listening and 10% speaking, and it can only be given by those who have learned how to leave themselves out of the picture. Our opinions, biases, peculiarities, and attitudes are immaterial to the job at hand. When their lives are on the line, our patients want to know, “Does my doctor really care about me or not?” May we never be ignorant of that unspoken question, and may we always be ready to reveal the happy answer, again and again.

 

Thank you for this beautiful post. Nothing is more important, as Dr. Hildreth points out, than knowing “does my doctor really care about me or not?”
I have read other posts by Dr. Hildreth, and each and every time I have come away with a better understanding of what it means to be in this profession of treating cancer patients. I admire Dr. Hildreth’s philosophy so much. The first time I ever read one of his posts, I said to myself (and to some of my employees) “Dr. Hildreth is the kind of oncologist I would want to have if I ever had cancer myself”. Thank you so much, Dr. Hildreth, for being a beautiful human being and oncologist.

Irene Balowski

 

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