Do Ask – Do Tell
After steadfastly opposing a 1992 state ballot measure and multiple bills that would have permitted physician-assisted suicide, the California Medical Association (CMA) fully supported the Terminal Patients’ Right to Know End-of-Life Options Act which was signed into law in May, 2008. Under the law, terminally ill patients in California have the legal right to information from their doctors about end-of-life options. Doctors are required to provide information about hospice care, palliative care and sedation, refusing or withdrawing life-prolonging treatments, and making the choice to refuse food and hydration – but only if the patient specifically requests the information.
CMA explained their insistence on the provision that patients must ask for the information with the reasoning that a physician who volunteers end-of-life information - or even raises the subject unbidden - could be exerting undue influence on patient choice. Doctor’s who want to avoid influencing patient choice? Something about that sounds a little hokey to me.
Isn’t it my physician’s job to be my advocate and partner? Am I naïve to expect full and complete information about treatment options if I develop some condition or disease? And that includes a bad prognosis and the possibility of addressing end-of-life choices. Quite frankly, I prefer my physician to volunteer all relevant information and try to influence the heck out of me. If I don’t like what I hear - or it’s actually something significant - I would get a second option. And maybe a third if I need a tie-breaker. Ultimately, I make my own decisions.
I can only speculate on why CMA felt it imperative to require patients to ask before they tell. There is also a provision in the law that if doctors are uncomfortable complying with a patient’s wishes (say to refuse a ventilator, to abandon chemotherapy or antibiotics, or to stop eating and drinking); they can recuse themselves and assign the patient to a doctor who will comply. This provision could suggest that a significant portion of physicians in California are opposed to end-of-life care. It could suggest that they believe aggressive medical intervention is always the best answer. On the other hand, requiring patients to bring up the subject of the futility of continued aggressive treatment could suggest a fear of litigation over end-of-life decisions and this law is meant to immunize physicians.
In my opinion, it is a sad statement that this law was necessary for terminally ill patients in California to get complete information about their end-of-life choices.
PJM
Monday, October 27, 2008
Withdrawal of Feeding Tube, Current Event
Most nurses and doctors can tell the difference between stopping feeding and intentionally starving a patient. Last week I was asked to take a "special case" in which a 50yr old patient's wife chose to stop feedings. Patient was in a vegetative state due to electrocution 25 yrs ago and hasw lived in the nursing home since. Patient aspirated on his feeding 10 days ago and wife made this decision.
Patient has abilities of an 8month old infant and does respond to me, reaches out to me, throws me his stuffed animal, screams in pain, curses, makes eye contact, recognizes me. This is an extremely uncomfortable case and I keep reminding myself that this is legal. He is starving to death, which will take about a month.
Jennifer B
Most nurses and doctors can tell the difference between stopping feeding and intentionally starving a patient. Last week I was asked to take a "special case" in which a 50yr old patient's wife chose to stop feedings. Patient was in a vegetative state due to electrocution 25 yrs ago and hasw lived in the nursing home since. Patient aspirated on his feeding 10 days ago and wife made this decision.
Patient has abilities of an 8month old infant and does respond to me, reaches out to me, throws me his stuffed animal, screams in pain, curses, makes eye contact, recognizes me. This is an extremely uncomfortable case and I keep reminding myself that this is legal. He is starving to death, which will take about a month.
Jennifer B
Wednesday, October 22, 2008
Please view this info on the Glascow Coma Scale as we discuss end of life issues for next class and readings.
http://en.wikipedia.org/wiki/Glasgow_Coma_Scale
I find that persons who are not in healthcare have a very very difficult time grasping the reality of what a person's body looks like when they are in a vegetative state. In addition, with the yearly stupidity of the National Enquirer headlines a "Man awakens from 20 year coma! States "I am really hungry"!
I will be happy to share my first hand knowledge of the dying process, coma, in class this week.
Jennifer Burns RN, Hospice Nurse
http://en.wikipedia.org/wiki/Glasgow_Coma_Scale
I find that persons who are not in healthcare have a very very difficult time grasping the reality of what a person's body looks like when they are in a vegetative state. In addition, with the yearly stupidity of the National Enquirer headlines a "Man awakens from 20 year coma! States "I am really hungry"!
I will be happy to share my first hand knowledge of the dying process, coma, in class this week.
Jennifer Burns RN, Hospice Nurse
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Supreme Court Case Upcoming
Sunday, October 19, 2008
Gonzales v. Planned Parenthood Federation of America, Inc.Planned Parenthood sued the Attorney General of the United States for an injunction against the enforcement of the Partial-Birth Abortion Ban Act of 2003, 18 U.S.C. § 1531. The district court granted the injunction, holding that the Act was facially unconstitutional because it was impermissibly vague, imposed an undue burden on a woman's constitutionally protected right to have an abortion, and had no exception to the ban for the health of the woman.The Attorney General appealed to the United States Court of Appeals for the Ninth Circuit, which affirmed the injunction for each of the three reasons stated by the district court. The Act was unconstitutionally vague because it used non-medical terms like "partial-birth abortion," which makes it too difficult for doctors to know what the statute covers. The Act also effectively outlawed second trimester abortions, causing an undue burden on a woman's right to have an abortion, which the United States Supreme Court ruled was unconstitutional in Stenberg v. Carhart. Finally, the Act does not contain an exception for abortions performed for the health of the woman, which Stenberg also requires.Question Presented: Whether, notwithstanding Congress's determination that a health exception was unnecessary to preserve the health of the mother, the Partial-Birth Abortion Ban Act of 2003 is invalid because it lacks a health exception or is otherwise unconstitutional on its face.Decision under ReviewWhat is a partial birth abortion?See this link. Warning it is graphic...http://www.nrlc.org/ABORTION/pba/diagram.htmlI think what I have discovered so far is that viability of fetus is still considered at 6months gestation. This is a fetus approximately 2-4 pounds. Many of you have known premature infants and can readily identify with this tiny person. I do not know personally of any physician that would perform this.I did have a friend who was born in 1950's as a result of a botched abortion attempt. He told me that the nurse took pity on him and put him in an iron lung machine and cared and raised him. He was very healthy, became a police office, then a lawyer, then went on to public office. He told me that he always felt he didn't want to waste his life's chance.He certainly did not.Jennifer Burns RN
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Supreme Court Case Upcoming
Sunday, October 19, 2008
Gonzales v. Planned Parenthood Federation of America, Inc.Planned Parenthood sued the Attorney General of the United States for an injunction against the enforcement of the Partial-Birth Abortion Ban Act of 2003, 18 U.S.C. § 1531. The district court granted the injunction, holding that the Act was facially unconstitutional because it was impermissibly vague, imposed an undue burden on a woman's constitutionally protected right to have an abortion, and had no exception to the ban for the health of the woman.The Attorney General appealed to the United States Court of Appeals for the Ninth Circuit, which affirmed the injunction for each of the three reasons stated by the district court. The Act was unconstitutionally vague because it used non-medical terms like "partial-birth abortion," which makes it too difficult for doctors to know what the statute covers. The Act also effectively outlawed second trimester abortions, causing an undue burden on a woman's right to have an abortion, which the United States Supreme Court ruled was unconstitutional in Stenberg v. Carhart. Finally, the Act does not contain an exception for abortions performed for the health of the woman, which Stenberg also requires.Question Presented: Whether, notwithstanding Congress's determination that a health exception was unnecessary to preserve the health of the mother, the Partial-Birth Abortion Ban Act of 2003 is invalid because it lacks a health exception or is otherwise unconstitutional on its face.Decision under ReviewWhat is a partial birth abortion?See this link. Warning it is graphic...http://www.nrlc.org/ABORTION/pba/diagram.htmlI think what I have discovered so far is that viability of fetus is still considered at 6months gestation. This is a fetus approximately 2-4 pounds. Many of you have known premature infants and can readily identify with this tiny person. I do not know personally of any physician that would perform this.I did have a friend who was born in 1950's as a result of a botched abortion attempt. He told me that the nurse took pity on him and put him in an iron lung machine and cared and raised him. He was very healthy, became a police office, then a lawyer, then went on to public office. He told me that he always felt he didn't want to waste his life's chance.He certainly did not.Jennifer Burns RN
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Foreign Policy and Bird Flu Vaccine Concerns
Seeing the headline, “U.S. controls bird flu vaccines over bioweapon fears,” http://news.yahoo.com/s/ap/20081011/ap_on_re_as/as_bird_flu_biological_warfare , piqued my curiosity, as I had recently posted a question after 9/26 class about how pluripotent stem cells could become “dangerous.” Further reading revealed that the keyword in the headline was “fears.” There is only a potential threat of biological weaponry with the HSN1 or Avian influenza virus.
In the article, the idea of a bird flu bioweapon was called “the nuttiest thing I ever heard” by U.S. defense secretary Robert Gates and other unnamed experts called the idea “far fetched.” We allegedly do not possess the technology to produce such a bioweapon. Experts believe that they cannot create a bioweapon from the bird flu vaccine, because the vaccine is created with an inactivated virus that cannot be genetically altered and cannot be resuscitated back to its virulent form.
Despite this lack of technology, the fear of biological warfare is apparently the motive behind the supplement to the U.S. export regulation. The Act, the International Emergency Economic Powers Act (Title 50 1701-1707), makes it convenient for the U.S. President to order embargoes to countries that are designated “state sponsors of terrorism.” Examples are North Korea, Iran, and Sudan; areas with strained diplomatic relations, human rights violations or nuclear weapon potential. Some countries are able to apply for export licenses to the U.S. Other countries, such as Iran, Cuba and Sudan have longstanding embargoes that prohibit trade with the U.S. Using language such as not letting the vaccines get into the wrong hands,” and “legitimate (italics mine)public health and scientific research is not adversely affected,” does sound as though bioterrorism through vaccines is a real national security concern.
Unfortunately, this ban is perceived negatively by some countries. Notice how the same article that I am citing is posted by the web site, Plan for Pandemic: HSN1 Avian Influenza What you need to Know and what you need to do about it: “Indonesia refuses to send bird flu virus to American lab fearing Bush may use same for bioweapons on non-white countries.” Consider the following headline: “U.S. Hoards Bird Flu Vaccines Over Bioweapon Fears” http://wjz.com/national/bird.flu.vaccine.2.838462.html. Perception truly is reality for some.
Bioethicists would say that limiting vaccines to select countries because of the foreign policy is morally questionable. This is because other countries accused of having biological weapons or weapons of mass destruction (WPD) such as Libya or Iraq do not have such trade restrictions. There should be consistency in the regulation of importation of viruses and the exportation of vaccines, if we are to appear ethical in our trade policy.
In the article, the idea of a bird flu bioweapon was called “the nuttiest thing I ever heard” by U.S. defense secretary Robert Gates and other unnamed experts called the idea “far fetched.” We allegedly do not possess the technology to produce such a bioweapon. Experts believe that they cannot create a bioweapon from the bird flu vaccine, because the vaccine is created with an inactivated virus that cannot be genetically altered and cannot be resuscitated back to its virulent form.
Despite this lack of technology, the fear of biological warfare is apparently the motive behind the supplement to the U.S. export regulation. The Act, the International Emergency Economic Powers Act (Title 50 1701-1707), makes it convenient for the U.S. President to order embargoes to countries that are designated “state sponsors of terrorism.” Examples are North Korea, Iran, and Sudan; areas with strained diplomatic relations, human rights violations or nuclear weapon potential. Some countries are able to apply for export licenses to the U.S. Other countries, such as Iran, Cuba and Sudan have longstanding embargoes that prohibit trade with the U.S. Using language such as not letting the vaccines get into the wrong hands,” and “legitimate (italics mine)public health and scientific research is not adversely affected,” does sound as though bioterrorism through vaccines is a real national security concern.
Unfortunately, this ban is perceived negatively by some countries. Notice how the same article that I am citing is posted by the web site, Plan for Pandemic: HSN1 Avian Influenza What you need to Know and what you need to do about it: “Indonesia refuses to send bird flu virus to American lab fearing Bush may use same for bioweapons on non-white countries.” Consider the following headline: “U.S. Hoards Bird Flu Vaccines Over Bioweapon Fears” http://wjz.com/national/bird.flu.vaccine.2.838462.html. Perception truly is reality for some.
Bioethicists would say that limiting vaccines to select countries because of the foreign policy is morally questionable. This is because other countries accused of having biological weapons or weapons of mass destruction (WPD) such as Libya or Iraq do not have such trade restrictions. There should be consistency in the regulation of importation of viruses and the exportation of vaccines, if we are to appear ethical in our trade policy.
Monday, October 20, 2008
Dangerous Clots
What is a blood clot? Well if you speak patois then it is something not too nice to say. Well, when it comes to our bodies it is something not to be desired. Deep vein thrombosis (DVT) and Pulmonary embolism (PE) affect people every year yet are undiagnosed at the early stage, this silent killer was introduced more publicly when David Bloom a NBC journalist covering the war died suddenly from DVT and PE. The symptoms and or warning signs of DVT are sometimes swollen arms and legs, skin redness, and a warm red spot, typically on the leg. The symptoms of PE are shortness of breath. The issues are physician’s mistake these signs as skin infections and a person considered out of shape. The Agency for Healthcare Research and Quality have stated some causes for blood clots are obesity, being over the age of 65, having had a bad bump or bruise, being confined to chair or bed for a long time, taking hormones (e.g. birth control) and there are plenty more. Once a person is diagnosed they are typically prescribed a blood thinner, the most common warfarin. The National, Heart, Lung, and Blood Institute (NHLBI) has begun funding research on genotype guided dosing of warfarin. The two genes being tested are CYP2C9 and VKORC1. These two genes would help clinicians find the best treatment for their patients. The question may not be is this necessary testing of genetics or sound reason to determine the best medication needed. The facts are if the dosage is administered wrong a person may experience excess bleeding while taking the medication. If the genetic testing is administered the side effects could be avoided as well the patient receives truly effective treatment. Is genetic testing for persons taking medicine for heart issues, diabetes, cancer, flu, common cold, and etc? Now some might suggest that is not the same yet, the purpose is to receive effective healthcare and have great outcomes. If genetic testing is applied to the common illness is this not preventative healthcare? Is not better to know the best medicine to take for a cold rather than purchasing the medicine that is not for your body? The issue of warfarin does not only address genetic testing rather it determines out future of medicine. We all know that no one person is the same and genetic testing supports this theory in some respect. Yet, as a society would we perceive genetic testing only imperative in the matters of life and death or a necessity to live a full healthy life.
KIRK
For further information please visit these websites http://www.ahrq.gov/consumer/bloodclots.pdf
http://www.ama-assn.org/amednews/2008/10/06/hlsb1006.htm
http://www.ama-assn.org/ama1/pub/upload/mm/464/warfarin_brochure.pdf
http://www.warfarindosing.org/Source/Home.aspx
What is a blood clot? Well if you speak patois then it is something not too nice to say. Well, when it comes to our bodies it is something not to be desired. Deep vein thrombosis (DVT) and Pulmonary embolism (PE) affect people every year yet are undiagnosed at the early stage, this silent killer was introduced more publicly when David Bloom a NBC journalist covering the war died suddenly from DVT and PE. The symptoms and or warning signs of DVT are sometimes swollen arms and legs, skin redness, and a warm red spot, typically on the leg. The symptoms of PE are shortness of breath. The issues are physician’s mistake these signs as skin infections and a person considered out of shape. The Agency for Healthcare Research and Quality have stated some causes for blood clots are obesity, being over the age of 65, having had a bad bump or bruise, being confined to chair or bed for a long time, taking hormones (e.g. birth control) and there are plenty more. Once a person is diagnosed they are typically prescribed a blood thinner, the most common warfarin. The National, Heart, Lung, and Blood Institute (NHLBI) has begun funding research on genotype guided dosing of warfarin. The two genes being tested are CYP2C9 and VKORC1. These two genes would help clinicians find the best treatment for their patients. The question may not be is this necessary testing of genetics or sound reason to determine the best medication needed. The facts are if the dosage is administered wrong a person may experience excess bleeding while taking the medication. If the genetic testing is administered the side effects could be avoided as well the patient receives truly effective treatment. Is genetic testing for persons taking medicine for heart issues, diabetes, cancer, flu, common cold, and etc? Now some might suggest that is not the same yet, the purpose is to receive effective healthcare and have great outcomes. If genetic testing is applied to the common illness is this not preventative healthcare? Is not better to know the best medicine to take for a cold rather than purchasing the medicine that is not for your body? The issue of warfarin does not only address genetic testing rather it determines out future of medicine. We all know that no one person is the same and genetic testing supports this theory in some respect. Yet, as a society would we perceive genetic testing only imperative in the matters of life and death or a necessity to live a full healthy life.
KIRK
For further information please visit these websites http://www.ahrq.gov/consumer/bloodclots.pdf
http://www.ama-assn.org/amednews/2008/10/06/hlsb1006.htm
http://www.ama-assn.org/ama1/pub/upload/mm/464/warfarin_brochure.pdf
http://www.warfarindosing.org/Source/Home.aspx
Genetic Exposure v. Privacy Concerns
Great story in today's NYTs about ten people who agreed to have their DNA mapped and posted online for the international community to see. The idea is that dispensing with privacy concerns will speed along genetic research. The more genetic information made publicly available, the faster research will progress. The project hopes to have 10,000 participants.
In exchange for the decoding of their DNA, participants agree to make it available to all — along with photographs, their disease histories, allergies, medications, ethnic backgrounds and a trove of other traits, called phenotypes, from food preferences to television viewing habits.
It will be interesting to see the social consequences of making public all of this personal information. GINA prohibits health insurers and employers from discriminating against individuals on the basis of their genetic profile. But participants could be denied life insurance, long-term care insurance or disability insurance, with no legal penalty. I was not aware that GINA did not cover those things. What if a person predispositioned to diabetes makes public her preference for a chocolate bar a day? Does she risk being denied long-term care insurance because she could be said to be bringing on the disease through her actions?
Because of risks like this the first ten participants were required to have the equivalent of a Masters degree in genetics. However, a person can have their entire genetic code sequenced for as little as $5,000, so these issues are going to become more of a concern as more people seek to acquire this information (this cost over $1 million two years ago)
I can just imagine a new Facebook application "MYgENOME" where you can compare your genetic code to others in order to find out who your are most compatible with. Americans simply do not value privacy. If you aren't willing to have a public persona, the first question asked is "What are you trying to hide?" While we are not sure what the consequences of publicly posted genetic code will be, maybe we should proceed slowly in order to properly assess the risks.
On the other hand, since genetic technology has been creeping along so slowly, maybe the risk is worth it. As one Doctor involved in a similar project said, “To truly understand humans we need a huge data set of 10,000 complete genomes, and the data needs to be open to everyone for interpretation.”
Why not create these "public" genetic databases, but require that in order to access the information you have to be a member of the International Geneticists Association. (I'm not even sure that that exists but, something like that.) I mean, does every Joe Schmoe really need to know about all of your family history and habits? I think not.
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