Tag: disability

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disability Emotion Lifestyle Patient-Centered Care Psychology

Nodding Along

My grandmother was a strong and compassionate Egyptian woman, a mother of three, and a pathologist. On a glass slide, exactly like the ones she used daily, cells from her colon biopsy were identified as undifferentiated, and within days she was diagnosed with Stage IV Colon Cancer.

Although I am learning how to care for people in sickness and health, someday, the chest compressions will be applied to my chest. Disease knows no discrimination, and death unites us all. Thousands of cancer diagnoses and precise and growing knowledge of cancer cell types did nothing to protect my grandmother from that which she knew so much about.

In Egypt, cancer is called ’the bad disease’, and bad it is. Over the next couple months, we watched as the bad disease took our beloved grandmother away from us. During that time, my family members, and my grandmother, had to make a series of challenging decisions that they were very obviously not prepared to make.

Medical advancements, although the main reason we are living longer lives, have caused the complexity and variety of end-of-life decisions to be ever increasing. Uneasy about the series of decisions that my family had to make and handicapped by my ignorance, I found myself reading Being Mortal by Atul Gawande. Atul Gawande led me through a vulnerable and imperfect but inspiring conversation about death and dying, exposing our medical system’s inability to understand health beyond the one-dimensional, and presumptuously noble, endeavor to prolong life at any cost.

While reading Being Mortal, I found myself enthusiastically nodding along, agreeing with the theme of the book: we need to change everything about our simple but destructive approach to aging and our increasing elderly population. Our singular approach to prolonging life simplifies complex social and medical decisions. It seems the attitude now is that longer life is all that matters. Ensuring nutrition and shelter is our only standard for a viable living environment for the elderly. We are failing our parents and grandparents.

Atul Gawande’s presentation of ideas changed how I perceive aging and our healthcare decisions at the end of life. I became a strong advocate of having conversations about the inevitability of our death and the choices we want to be made during our end-of-life care. I was convinced that society and healthcare should ensure that the elderly remain the authors of their own stories for as long as they are willing, and actively empower them to do so. Nutrition, shelter, and minimizing fall risk are minimums of care, not acceptable standards.

The Literature in Medicine Student Interest Group at my school decided to read Atul Gawande’s Being Mortal, and I could not be more excited. In the middle of our meeting discussing the book, as I was passionately sharing my ideas, it occurred to me that although I was full of strong opinions, I had done absolutely nothing to be a part of the solution. My grandfather had come to live with us after his wife of 55 years, my grandmother, passed away from colon cancer, and my only roles/concerns in his care have been to ensure food, sleep, and meds. My strong opinions had not inspired my actions.

Nodding along to Atul Gawande’s criticisms of our medical system is easy, but having an honest conversation with my grandfather about his priorities and end-of-life care preferences as he reaches 90 years of age is not so easy. How might I empower my grandfather to continue to be the author of his story? Believing that healthcare is a right and not a privilege is easy, but carrying out the responsibility that this belief invokes is not so easy. How might I work to help provide all my neighbors with equal access to high-quality care? Practicing the invaluable intervention of presence is not easy, and working day after day to hone my abilities at the art of empathy is not easy. How might I overcome my doubts, fears, and insecurities, and avoid being frozen into lack of compassion?

Too often my strong opinions do not inform my actions. Too often my hate for dysfunctional and unjust systems overshadows my love for the people in the systems. I call myself to love my neighbors more than hate the systems, for love is actionable and hate is stifling and tiresome. Let love fuel the tank, for compassion-based activism is the only kind that goes the distance.

Photo Credit: Dan Strange

Categories
Disability Issues General Lifestyle

Deafness as a culture

“Try not to associate bodily defect with mental, my good friend, except for a solid reason”
– Charles Dickens, David Copperfield

What is the first thought that pops into your head when you think of the word deaf? Do you think of a disability? An inability to function in society? Do you think of loss? Of a deficiency in one of the most vital senses? Or do you think of group of people with similar values and beliefs, brought together through their experiences?

The medical model sees deafness as a disability, an impairment that needs to be fixed. A disability is defined in the Oxford Dictionary as a physical or mental condition that limits a person’s movements, senses or activities. In this sense, one could agree that deafness is considered a disability. However, deafness comes in two forms: deafness, indicating disability, and Deafness, indicating a culture.

Culture is defined as the ideas, customs, and social behaviors of a particular people or society. Deafness can therefore be viewed as a disability or an altered human experience. Deaf culture can include beliefs, behaviours, traditions, history, and values of the community. Deaf culture is an ethnocentric culture, based more upon sign language and relationships rather than a common native land – it is a global culture. Deaf Culture sees itself as a language minority than a disability.

 

Values and Beliefs

A culture tends to have its own beliefs and customs that are shared by its members, and deaf culture is no different. Deaf social protocol is based upon maintaining good visibility with others in the environment (Deaf Culture 2014).

Some examples of social customs within this culture include:

  • Rules of etiquette for getting attention and politely negotiating a signed environment
  • Keeping one another informed of what is going on in one’s environment – for example, letting someone know that one is going to the bathroom (in the hearing environment this is often not needed)

 

Arts and Literature

As with other cultures, deaf culture is rich in history and art. Storytelling also makes up a big part of the culture. Clayton Valli was an American deaf linguist who created works in ASL performed through handshape, movement and facial expression. One of his pieces of work, called Dandelion can be found here.

There is also a National Theatre of the Deaf in the USA that involves productions using ASL and spoken word. Their mission statement is to educate the public and open their eyes and ears to deaf culture (National Theatre of the Deaf 2014).

Media is a vital component in getting ones message heard, and many artistic groups throughout the world have increased awareness of deaf culture, helping to stem ignorance and begin a conversation about the experience of being deaf. Movies and TV programs also need to start promoting deafness not as a pathological condition but as a way of life, helping to banish this perception of disease and impairment.

 

Cochlear Implant Controversy

Cochlear implants are electronic devices that can be surgically implanted in patients who are deaf due to sensory hair cell damage. They can provide hearing in order to increase understanding of speech, and it is estimated that 324,000 people worldwide have received them as of 2012 (NIDCD 2013).
Although this may seem like an incredible treatment for those who have difficulty hearing, it also gives the suggestion that deafness is a condition that needs to be fixed. Some deaf people are not so much against the cochlear implant, than what it represents: a lack of respect for their culture. Indeed, some people have gone so far as to describe these devices as a means of cultural genocide.

It can be argued that deafness, as a cultural identity, should be encouraged to thrive and be supported in today’s diverse society. Others believe that every child should be given an equal chance in life. Through cochlear implants one will have opened the door to greater opportunities, such as better chances of finding employment, integrating with the community at large, and achieving a greater level of success. But why should a deviation from the norm result in fewer opportunities in the first place? Shouldn’t we be dealing with this inequality rather than trying to cover it?

Doctors may see a deaf child as missing something vital, being impaired and therefore not able to function in society. The word impairment implies fault; imagine the implications this can have on a child who is told they need to be fixed. Children should feel proud of who they are, not ashamed of what they were born with. What kind of impact would such thoughts have on their self-esteem? We all know how isolating it can feel to be different during childhood; why should we push these children further away from society?

Cochlear implants are seen as being oppressive: an illustration of our overreliance on the biomedical model. Instead of seeing a child as impaired, it would be more helpful to see the child as having a different natural language. We live in an age where we preach about acceptance and diversity. Shouldn’t we be embracing the deaf culture instead of annihilating it?

What does this mean about the future? If we find the cure for deafness tomorrow, does that eradicate an entire culture? Will there be people out there who will refuse to accept the cure for their child? And what implications will that have on the medical profession – can we accept this refusal? After all, every child deserves the best start in life. Where do we stand between respecting ones beliefs and doing the best for our patient?

 

Diversity

It has been suggested that deafness can be an isolating experience; you are part of a minority, cut off from the rest of the world. One could also argue that there are plenty of cultural minorities out there; despite English becoming more and more vital in our multicultural environment, there are many minor cultures out there who do not have English as their native tongue and are therefore cut off from a large part of civilization. Does that stop them from being a culture?

Diversity is a good thing: it is what makes society grow. It is needed for creativity, for quenching ignorance and progressing as a race. What is considered normal in this day and age? Having an illness gives you a new identity, a new way of looking at the world and translating your surroundings. What is considered illness to one person is considered normal to another. By embracing the different views on deafness, we embrace the diversity of mankind and what it has to offer.

 

References
Deaf Culture. 2014. Comparative chart: deaf and ethnic cultures [Accessed: 17thDecember 2014]
Deaf Cultural Centre. Arts & Culture [Accessed: 17th December 2014]
Jones, M.A. 2002. Deafness as Culture: A Psychosocial Perspective. Disability Studies Quarterly. 22:51-60
National Theatre of the Deaf. 2014. About the National Theatre of the Deaf [Accessed: 17th December 2014]

Featured image:
DEAF project #5 by Dario-Jacopo Lagana’

Categories
General Lifestyle Opinion

I Will Not Try To Fix You

Disability—The Oxford dictionary defines disability as “a physical or mental condition that limits a person’s movements, senses, or activities.”

Although some disabled people have medical ailments, the two conditions are not synonymous. While a disabled person might require medical attention, disability is defined by social barriers, not pathophysiology.

It is an umbrella term and includes impairments and activity limitations. Impairment is a problem in the body’s structure or function; activity limitation is a difficulty encountered by an individual in executing a task or action.

Disability is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers.

Those with disabilities have capacities for motor, sensory, and cognitive tasks that differ from the “norm.” Each individual has different qualities and capabilities, but defining this “norm” is practically impossible. Society can create barriers that do not allow an individual to develop to his or her full potential. Likewise, society can remove disabling barriers. A wheelchair user cannot get into a building with steps at the entrance, but a ramp or a lift completely removes that particular barrier. Seated before a ramp, is an individual in a wheelchair disabled?

An individual with Down Syndrome can hold meaningful employment if provided with appropriate support. Down Syndrome itself is not a disability; it is a medical condition. An individual will experience specific barriers that emerge because of the relationship between impairments and societal barriers. The presence or absence of medical conditions can cause one individual to vary from another in terms of motor, sensory, and cognitive function, but an individual is only disabled when appropriate accommodations are not made.

As a societal construct, disability fluctuates in different settings. In a completely adapted home, or with adequate assistance, an individual might have no disability at all; while, in an environment without assistance, this person might become disabled.

Physicians treat medical conditions and, as such, they tend to focus on the “limitations” and “abnormalities” associated with disabled people’s conditions; heart disease, for example, in those with Down syndrome. Disabilities, however, are not medical conditions in and of themselves. The role of a physician is to assess the health of a disabled person, provide treatment for associated symptoms, and anticipate as well as prevent future complications. This can greatly improve a disabled person’s quality of life, and, in some cases, even prolong life. Fixing the disability is not in the doctor’s job description.

How do you, as a medical student, perceive disabled people? Do you feel as if medicine failed them by not being able to “cure” them?

Disability is not tragic; it is tragic that society doesn’t appreciate the abilities of disabled individuals.

Disabled people often report being patronized by medical staff, being described as having “a fate worse than death”, or carrying an “unhealthy gene”, as well as “suffering” from a condition. Consider the power of language. Great advances have been made in both medicine and technology, and even more in the public’s perception and understanding of disability.

Disabled people have more freedom, independence, and equality than they did previously, but there is further work to be done. Rather than making a distinction between disabled or not, physicians should be leaders in embracing diversity and independent living for all of their patients, including disabled people.

Dr. Chris Smith – a disabled associate professor of communication arts and sciences at Calvin College, USA – recently spoke about perceptions towards disabled people, stating that “the ultimate test of living in community is found in our willingness to change our minds about one another.”

People with disabilities have the same health needs as non-disabled people – for immunizations, cancer screening etc. They may experience a narrower margin of health, due to both poverty and social exclusion, and also because they may be vulnerable to secondary conditions. Evidence suggests that disabled people face barriers in accessing the health and rehabilitation services they need in many settings.

As future physicians, it is important to view disabled patients equally to all others, whilst acknowledging the barriers they face. When approaching your disabled patients, do not define them by their impairment, do not pity them, do not try to “fix” them; rather, appreciate their abilities, recognize them for their values and behaviors, support them to achieve their aspirations, and, most importantly, listen to them.

Featured image:
disability by Abhijit Bhaduri

Categories
Law Opinion

Medicolegal Issues: Physician Involvement in Litigation

The medical and legal landscapes are intertwined much more so than ever before. With the advent of this close relationship between the medical and legal fields, physicians have become involved in a multitude of legal proceedings. Physician involvement ranges from consultation on legal matters to testifying in open court to contesting malpractice lawsuits. In part 2 of our review of medicolegal issues, we are going to look at a few different types of legal cases that physicians are involved in, and what their roles are in those proceedings.

Social Security or Supplemental Security Disability Hearings

One of the major case types in which physicians are involved is for determination of an individual’s eligibility for Social Security or Supplemental Security Income Disability. Both of these programs provide financial assistance for those with disabilities. Social Security Income Disability pays benefits to people who are “insured”, meaning those who have worked for a certain number of years and have paid Social Security taxes. Supplemental Security Income does not have those restrictions, and pays benefits based on the financial requirements of the applicant.

Cases involving income disability center around a hearing, where citizens can appeal decisions made by the Social Security Administration (SSA) involving eligibility or specific monetary payouts. In these types of cases, physicians often testify for both the claimant and SSA. When physicians testify for the claimant, their purpose is usually to summarize key information about the claimant’s medical history and to provide the judge with evidence justifying the awarding of income disability. When physicians testify for the SSA, the purpose of their testimony remains to summarize key information about the claimant’s medical history. However, physicians are often called by the SSA to help support SSA decisions and prevent the case from being remanded or appealed again. Irrespective of which party the physician testifies for, they are also exposed to questioning by the other side involved in the hearing.

Criminal Trials

Another key case type that physicians testify in, and probably the one most notable to the public, is criminal trials. In criminal trials there are two notable roles that physicians may play.   Physicians in the field of forensic pathology fill the first notable role. Forensic pathology is a sub-specialty of pathology and requires an additional year of fellowship training after completion of a pathology residency program. The role of forensic pathologists is multiple, with their primary objective being to analyze biological evidence. This analysis can include such things as performing autopsies on postmortem specimens to determine cause of death, examining wounds for possible etiology, inspecting histological slides to identify a disease process, or interpreting toxicology screens to determine drug exposure or impairment. Forensic pathologists are often called upon as expert witnesses to provide their testimony in open court, and they are subject to questioning by both parties involved in a case.

Forensic psychiatrists fill the second notable role for physicians in criminal trials. Forensic psychiatry is a sub-specialty of psychiatry, with an additional year of fellowship training after completing a psychiatry residency program. The responsibilities of a forensic psychiatrist include determining a person’s ability to stand trial in the context of mental competence. Further responsibilities include giving an opinion to the court about the mental state of a person during the commission of a crime. If a forensic psychiatrist determines that the party in question has some mental defect or illness, the party may be found “not guilty by reason of insanity.” The validity of these judgments are controversial, as many are suspicious of attorneys using “insanity defenses” when they are not typically warranted. Like forensic pathologists, forensic psychiatrists are subject to questioning by both parties involved in any legal case in which they testify.

Malpractice Cases

Medical malpractice is defined as professional negligence by a health care provider where the treatment provided falls below, or deviates from, accepted standards of care. The specific course of action taken by the health care provider results in injury or death of the patient. In these types of cases physicians are the defendants, and they often employ legal advisors to aid in their defense. In order to further protect themselves from malpractice suits, physicians and hospital systems spend significant sums of money on malpractice insurance.

The statistics behind medical malpractice are both interesting and striking. In 2012, malpractice payouts totaled $3.6 billion from 12,142 claims. Cases involving death (31%) and significant permanent injuries (19%) encompassed 50% of all payouts. 5 states (New York, Pennsylvania, California, New Jersey, and Florida) had total payouts exceeding $200 million. The significant monetary burden of malpractice claims has created a controversy surrounding tort reform. Malpractice tort reform will be the topic of the next installment of the series, so stay tuned!

 

Sources

  1. http://www.ssa.gov/disability/
  2. http://www.disabled-world.com/disability/legal/ssdi-hearings.php
  3. http://www.ssdrc.com/disabilityquestions1-49.html
  4. http://www.forbes.com/sites/learnvest/2013/05/16/10-things-you-want-to-know-about-medical-malpractice/
  5. http://www.beckershospitalreview.com/legal-regulatory-issues/29-statistics-on-medical-malpractice-payouts-and-lawsuits.html

Featured image:
Cast Aluminium Nurse with Stethoscope (Ne Kensington, PA) by takomabibelot