"She wanted to know if HR had the scope to suspend people who may or may not have read the full thread of a group text and responded to the original text."
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christinasisti
"Redefinition is scary, but it is especially scary when a loss of all that one has known is necessary to redefine their self."
"On Sunday, October 30th over 12,000 people from around the world convened at the Colorado Convention Center to kick off the American Public Health Association’s (APHA) 144th Conference."
"This last decision allows them to embrace the right to believe, act, and express themselves one last time."
"The benefit of drug-gene testing is a reduction of people becoming ill due to an adverse reaction to a prescription and dosage."
"The Wall Street Journal reported that almost two-thirds of the world’s population lack access to safe, affordable surgical care."
In a meeting today I was reminded of how pragmatism and futility of care collide. A colleague pulled me aside and asked for my opinion on a case. I agreed to listen and as I listened I began to understand how experiences, the truth, and hope collide with the concept of futility of care.
The case, an older patient, diagnosed with an aggressive form of cancer, refuses to follow medical recommendations. The patient is at a point where radiation and chemotherapy will not help. There is no cure. After much discussion, the patient agreed to palliative care and receiving intravenous feeding. The patient, despite the prognosis, believes this treatment will help strengthen them so they may receive chemotherapy. The family and the medical team understand the intravenous feeding will not bring about a recovery. There is no reprieve, no beating this form of cancer but the patient believes otherwise. My colleague’s query was: Is there an ethical obligation to intervene and stop any care which is futile? My answer was: there is an ethical obligation to understand the patient’s truth and respect their decision for treatment. To do this, we must examine the concepts of pragmatism and futility of care.
What we perceive, form judgments on, and then mold into our belief system comes from external experiences. William James, a Pragmatist, describes how, in the normal case, we have an established body of views and opinions, and issues about what to believe arise when a new experience puts them under strain. We will accept a new opinion when “[I]t preserves the older stock of truths with a minimum of modification, stretching them just enough to make them admit the novelty, but conceiving that in ways as familiar as the case leaves possible.”1 It is the patient’s experience and therefore their truth that treatment of any kind will strengthen the body allowing for further treatments which address the cause of the patient illness. In this case, the patient believes intravenous feedings will help them in their goal to fight cancer. They don’t have any reason not to think this because previous experiences with medical care have made them better. For the patient, medical care represents hope, and this is a form of truth which makes the patient comfortable. While the family and the medical team understand intravenous feeding is futile because the cancer is aggressive and will not let the patient heal enough to fight, the patient, despite the prognosis, remains faithful to an older form of truth. Forming truth out of experience creates a problem because, while, the patient has experienced better health through medical intervention facts gathered by the family and medical team has shown all care is futile.
Richard Rorty, a philosopher, may have the answer to the dilemma the family, patient and medical team are facing. Rorty said: “What pragmatists teach us about the truth is that there is nothing very systematic or constructive to say about truth at all. In particular, this concept does not capture any systematic or metaphysical relation between our beliefs and utterances, on the one hand, and reality on the other….sometimes we might find it useful to express our fallibility by saying that some of our beliefs may not be true”1 We are fallible.
We want our beliefs to be true because the truth we believe in gives us hope. In this case, the patient’s belief in intravenous feeding gives hope despite the growing realization there is none. Is the care futile? No. The intravenous feedings provide comfort to the patient who is coming to terms with their prognosis of death. Futility of care exists if there is harm done to the patient. There is no harm, and one could argue there is a benefit to the intravenous feedings because they’re providing hope to the patient, however, false it may be in the family and medical team’s opinion. There are times when if there is no harm to the patient and care is benefitting the patient, in this case allowing the patient to hold onto hope, care must continue. To remove treatment is to remove hope, and once removed, care becomes futile.
References:
1. Pragmatism (Stanford Encyclopedia of Philosophy), http://plato.stanford.edu/entries/pragmatism/ (accessed October 03, 2016).
It’s early in the morning, and I receive the alert to meet a potential client in court. As I stand outside of the courtroom, I watch the chaos of confused people and attorneys quickly consulting with each other. Then I am called over by the attorney for the Department of Family and Children, DCF, to meet their new client. The client is scared, confused, and unsure of what is going on. All she knows is her children are in the custody of DCF, and she now must go through the prescribed steps to have them back with her. I introduce myself, explain my program, and ask if she wants to sign on to Dependency Drug Court. She nods and is hustled into the courtroom to hear what the judge has to say. When asked if she has spoken to a representative of the Dependency Drug Court program she says yes and consents to become a part of the program. After this a time to meet with me is arranged, attorneys swarm nearby while, in some cases, concerned family members appear like ghostly apparitions to take my new client home. Her life has changed immeasurably because of one positive test or one anonymous phone call, and there is no going back to what it once was.
During the first appointment with the client, I explain the program and how successful completion of each section will grant her more rights and access to her children. There are no forms for her to sign, nothing for her to read and no further explanation on my side of what Dependency Drug Court fully entails and how it will impact her life for at least the next 18 months. Her consent in court placed her in my office and the program. We briefly discuss her concerns with addiction, both DCF- and life-based, and work on setting up a treatment plan. It all seems straightforward, but I often wonder how a person can consent to a program when in all likelihood one does not have the full capacity of their facilities at that time?
People thrust into the court system are often unprepared and, as is the case for many of my clients, often undereducated. The information, the timing of the consults, and the lack of pamphlets create an ethical dilemma: was informed consent to join the program given when asked by the judge? I don’t believe it was. The confusion, barrage of questions and information, and the shock of being in a courtroom are overwhelming for anyone, but for someone charged with child endangerment and neglect due to drug use it can be sensory overload. There is no time to stop, think, and consider all the options, and there is no pamphlet to read later. Ethically, it is impossible to contend the new client was aware of the possible consequences of the program or had full knowledge of the risks and benefits. To give permission means to understand, and in the case of those ushered into a Dependency Drug Court program, full knowledge is often lacking due to the circumstances surrounding their enrollment.
Instead of consent while facing a judge, the potential client should meet with the Dependency Drug Court Clinician, have the program re-explained, a brochure given and a second appointment set up to go over any questions they may have. It is only at this point a consent form of their rights and responsibilities in the program should be signed, and the new client is then a part of the program. Informed consent is imperative for both the client and the program. Giving the potential client time to gather their thoughts, talk to people, and read the information before consenting to be in a rigorous program helps to ensure their success within the program and in establishing their sobriety.
Women are affected by heart disease at higher rates than men not because they don’t care about their health but because they aren’t being tracked by their doctors at the same rate as males. The reason men's heart disease rates have decreased over the past thirty years is because the focus of Public health campaigns, marketing for heart disease care and prevention as well as doctors fail to focus on women.
A study in the European Journal of Preventive Cardiology found that male General Practitioners, GP’s, are less likely than female GP’s to collect information on smoking, blood glucose and cholesterol from their female patients than their male patients. Female GP's were found to have a higher rate of compliance with the recommended guidelines for heart disease tracking and were more apt to ask their female patients the pertinent questions so they would be able to track their patient's health. The findings are from Europe but the results still hit close to home. Women are not being tracked as well as men when it comes to heart disease. They are also failing to respond to campaigns aimed at preventing and decreasing heart disease.
The majority of women’s health issues focus on reproductive health. While it is important to pay attention to reproductive health it fails to take into consideration whole health. The years when women are of child-bearing age estrogen is thought to protect women from heart disease. During these years women should have active conversations with their Gynecologist and/or their GP about heart disease and prevention. The patient/physician relationship should be built so conversations regarding heart health and lifestyle are held at every chance the physician has to see their patient. Increasing awareness at a during the doctor’s visit will help increase the likelihood women will take preventative steps to increase their heart health before the protective effects of estrogen dissipate.
The next step to heart health lies in marketing how a healthy lifestyle will prevent heart disease later in life. The National Institutes of Health found heart disease is still the leading cause of death amongst women despite preventive measures put in place in the 1980’s. Their findings showed males have reduced their rate of heart disease while women remain at the same incident level. The message needs to change to connect with women if they want to see a decrease in women's heart disease rates by changing the way the messages are sent in campaigns. Women need to be shown as actively fighting heart disease, not being the caretakers of men who are fighting heart disease. Campaigns should empower women to talk to their physician about heart health by connecting with women at a personal level.
It is important to include women in the process of creating public health campaigns and advertising for heart health. Heart disease is the number one killer for women in general, specifically for Caucasians and African American women, their needs, how they respond to information and the way the information is presented must be considered. There is a need to be cognizant of how women, especially those with a high risk factor, respond to campaigns for heart disease prevention.
A lack of information, education and preventative marketing for women leads to a lack of improvement in women's heart health. Campaigns which focus on women, their risk and their need to tell their doctor their health habits need to be created. Patients and Physicians need to work together to find a solution to the leading killer of women together not separately. Through a joint effort awareness can be raised, health habits addressed and heart disease decreased.
References:
1. Delpech,Raphaëlle,Ringa,Virginie, Falcoff,Hector, & Rigal,Laurent. ( 2016, June 21). Primary prevention of cardiovascular disease: More patient gender-based differences in risk evaluation among male general practitioners. European Journal of Preventive Cardiology. Doi: 10.177/2047487316648476. Retrieved from http://cpr.sagepub.com/content/early/2016/06/09/2047487316648476.full.
2. National Institutes of Health. (2010,February 2). Even With Heart Disease Awareness on the Rise, Prevention Remains Critically Important for American Women: The Heart Truth campaign urges women to take action. (National Institutes of Health Publication). Retrieved from https://www.nih.gov/news-events/news-releases/even-heart-disease-awareness-rise-prevention-remains-critically-important-american-women
When I graduated from high school, I went to a school as far away as I possibly could. I ran away from my small hometown and never turned back. I wanted to leave everything behind – the stares, the whispers, the feeling of being excluded – and start new where no one knew my health history. I wanted to be anonymous, my surgeries and recoveries lost in the past. I didn’t want to be known anymore as “that disabled girl” or “the girl who’s always sick.” I wanted to be free of labels, free of those who knew me, free of my obsolete identity.
I read about the death of a childhood friend the other day and I was yanked home. The memories came flooding back, and sadness took hold. I can’t pretend that we stayed in touch; I hadn’t spoken to her in several years, even in this age of social media. And yet, I felt the loss. Friends, townspeople, and the comfort of my small town crept slowly into my mind. I wondered about the randomness of sickness, why it chooses one and not the other, the fates we are all dealt and how time can be clever and cruel. I’m not an overly philosophical person; I like facts, I like concreteness, I like answers and now I have none. I realized that I long to be home again. I realized that even though I thought I could recreate myself, be new and become someone else, I had taken with me one thing I cannot rid myself of: my community. I held on to the steadfastness of the farmers, the people’s belief in something bigger than themselves, and the lesson to “be you.”
I spent years running away from home, only to realize that it was with me this whole time. I earned degrees which would allow me to help others. I worked with women and children who had been physically, sexually, and emotionally abused. They knew the haunting cry of pain, and I knew the steadfastness that comes with the belief and faith that you are not here in this world for yourself, but to serve others. Hands that had been sculpted by years of reconstructive hand surgery held and comforted those who were hurt, hands that were viewed as “odd” wrote words that provided funding, and the hands that I had loathed for so long and had run away from had created opportunities for me.
Small towns have a funny way of calling you back home. You find yourself in them, even if you are hundreds of miles away. I am the product of the small farming town where I was raised. I am finally beginning to realize that without them, I wouldn’t be where I am now. There’s no shaking my history, but in this knowledge I’ve found peace and resolve in my journey forward.
It was day two at the Bioethics conference and the small breakout group’s conversation was swirling around me as people discussed the plight of the disabled when one word catches my attention: privilege. The debate begins concerning who is the voice of, the leaders of, and the true representatives of the disabled. Those who are considered the voice of or leaders of those who are disabled were accused of being privileged in this conversation. They didn’t represent the disabled because they haven’t lived the lives of those who aren’t able to access the finest care and go to the best schools. Then I begin to speak.
When I was born, the visible disabilities immediately defined who I am and in some ways who my mom was going to become. My mother, divorced with two children, knew she had to take steps to ensure my health care needs would be met. She sought answers regarding my care and began the process of taking me to doctors for consultations and surgeries. Through all of this she found doctors who were nationally recognized and were able to meet my healthcare needs. She worked full time as a teacher and took on several part time jobs to ensure I could have the best healthcare she could afford. I was "privileged" because I had someone who sacrificed their comfort for my well- being. I was "privileged" because I had doctors, who included me in my treatment plans; who listened to me. This isn’t the type of privilege which would discount my ability to understand the needs of those who are disabled, but it could make me blind to the struggle of those who aren’t able to access this type of care.
My voice is not loud, is not heard by many, and may never influence change, but my determination to advocate for those who cannot and do not know where to start is strong. Working with those who struggle, those who are unaware of the care which exists in their community and providing comfort to those who find out their child will be disabled is a privilege. It doesn’t come with money, tenure or talk shows but it does come with smiles, hugs and heartfelt thanks. Privilege has many faces and while I believe those who have never experienced hardship should stop, step out of their comfort zone and live the life of those who are less fortunate before they legislate, write, and espouse what should and should not be in the world of disability, I also understand this is my "privileged" view.
"In cases such as Zika the shared fundamental belief of the right to access healthcare and prevent citizens from harm must take priority over a minority’s beliefs."
Insurance companies request increased premiums for ACA plans: can society afford increased premiums?
"A priority on health and its benefits to society needs to be understood."
"Access to the app enforces a person's freedom to pursue their own interest according to their own free will without interference from outside interests."